UBC Theses and Dissertations

UBC Theses Logo

UBC Theses and Dissertations

Development of the International Classification of Functioning, Disability and Health Core Sets for children… Schiariti, Veronica 2014

Your browser doesn't seem to have a PDF viewer, please download the PDF to view this item.

Item Metadata

Download

Media
24-ubc_2014_september_schiariti_veronica.pdf [ 2.67MB ]
Metadata
JSON: 24-1.0167250.json
JSON-LD: 24-1.0167250-ld.json
RDF/XML (Pretty): 24-1.0167250-rdf.xml
RDF/JSON: 24-1.0167250-rdf.json
Turtle: 24-1.0167250-turtle.txt
N-Triples: 24-1.0167250-rdf-ntriples.txt
Original Record: 24-1.0167250-source.json
Full Text
24-1.0167250-fulltext.txt
Citation
24-1.0167250.ris

Full Text

DEVELOPMENT OF THE INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH CORE SETS FOR CHILDREN AND YOUTH WITH CEREBRAL PALSY   by  Veronica Schiariti  M.D., The University of Buenos Aires, 1996 Pediatrics, The University of Buenos Aires, 2001  M.HSc., The University of British Columbia, 2006 Fellow Developmental Pediatrics, The University of British Columbia, 2007      A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF  DOCTOR OF PHILOSOPHY   in   THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES   (Experimental Medicine)       THE UNIVERSITY OF BRITISH COLUMBIA  (Vancouver)  July 2014   © Veronica Schiariti, 2014  ii  Abstract This doctoral dissertation comprises four studies and an expert consensus meeting charged with identifying the most relevant areas of functioning for children and youth with cerebral palsy (CP) aged 0-18 years. The conceptual framework for this project was the International Classification of Functioning, Disability and Health for children and youth (ICF-CY).  According to this model, functioning - “what a person can or cannot do every day” - results from the positive and negative interactions between factors within the child, the task, and the context, including personal and environmental factors.  In these studies, functioning was described using the ICF-CY units of analysis:  ICF-CY categories.  This project’s design featured rigorous, evidence-based quantitative and qualitative techniques.  Studies I-IV gathered evidence on critical aspects of functioning for children and youth with CP from various perspectives:  the research community (Study I), the international experts (Study II), the children and youth with CP and their caregivers (Study III), and the clinicians (Study IV). Data from each study were linked to the ICF-CY using linking rules.  Each study identified a unique list of ICF-CY categories representing every ICF-CY component. The most prevalent components included activities and participation and body functions. Specifically, topics related to d4-Mobility, d5-Self-care, d9-Communiy civil life, b7-Neuromusculoskeletal functions and b1-Learning and applying knowledge were described often in all the studies.   The lists of ICF-CY categories generated from Studies I-IV were presented to an international group of experts in the field of childhood disability. The experts, by consensus, created the ICF Core Sets for children and youth with CP. Five Core Sets were developed: a Comprehensive Core Set to be used in interdisciplinary assessments of children aged 0–18 years, iii  a Common Brief Core Set applicable to children aged 0-18 years, and three Age-Specific Core Sets (for children younger than 6 years, between 6-<14 years and youth transitioning to adulthood aged ≥14-18 years).  The ICF Core Sets are the first ICF-CY-based tools for children and youth with CP, facilitating the application of the ICF-CY in clinical practice, research, education and administration.  Most importantly, they will standardize the functional assessment process of this population worldwide.  iv  Preface Sections of chapters 3 and 4 have been published in six papers:  Paper 1 ─ Schiariti V., Mâsse L.C., Cieza A., Klassen A.F., Sauve K., Armstrong R., O'Donnell M. (2014) Toward the development of the ICF Core Sets for children with cerebral palsy: a global expert survey. Journal of Child Neurology, 29(5):582-91. I conducted the design of the survey, the pilot of the survey, the recruitment of participants, the data collection, the data analysis, and the interpretation of the data. I was the main writer of the manuscript.  I wrote the first draft of the manuscript and worked on the revisions of the manuscript. Co-authors contributions were as follows: Cieza A., Armstrong R. and O'Donnell M. collaborated in the design the study. Mâsse L.C. interpreted the data and wrote part of the manuscript. Sauve K. performed data collection and data analysis. Mâsse L.C., Cieza A., Klassen A.F., Sauve K., Armstrong R., O'Donnell M. reviewed the manuscript for intellectual content and were responsible for critically revising the manuscript.   Paper 2 ─ Schiariti V., Klassen A.F., Cieza A., Sauve K., O'Donnell M., Armstrong R., Mâsse L.C. (2014) Comparing contents of outcome measures in cerebral palsy using the International Classification of Functioning (ICF-CY): a systematic review.  European Journal Paediatric Neurology,18(1):1-12. I participated in the study design, the screening of citations, the retrieval of measures, the linking of the content of the measures to the ICF, the content analysis, the data analysis, and the interpretation of the data. I contributed the most substantive content of the manuscript and worked on the revisions. Co-authors contributions were as follows: Cieza A., O'Donnell M., Armstrong R. and Klassen A.F. collaborated in the design of the study. Mâsse L.C. interpreted the data and wrote part of the manuscript. Sauve K. performed data collection v  and linking of the data. Mâsse L.C., Cieza A., Klassen A.F., Sauve K., Armstrong R., O'Donnell M. reviewed the manuscript for intellectual content and were responsible for critically revising the manuscript.   Paper 3 ─ Schiariti V., Sauve K., Klassen A., Cieza A, O’Donnell M., Mâsse L.C. (2014) “He does not see himself as being different”: children and caregivers’ perspectives on relevant areas of functioning in cerebral palsy. Developmental Medicine and Child Neurology,  http://dx.doi.org/10.1111/dmcn.12472. I participated in the study design, the recruitment of participants, the linking of the themes identified in the transcript to the ICF-CY, the data analysis, and the interpretation of the data. I contributed significant manuscript writing. I wrote the first draft of the manuscript and worked on the revisions of the manuscript. Co-authors contributions were as follows: Mâsse L.C., Cieza A., O'Donnell M., and Klassen A.F. collaborated in the design of the study. Mâsse L.C. interpreted the data and wrote part of the manuscript. Sauve K. performed data collection and linking of the data. Mâsse L.C., Cieza A., Klassen A.F., Sauve K., O'Donnell M. reviewed the manuscript for intellectual content and were responsible for critically revising the manuscript.   Paper 4 ─ Schiariti V., Mâsse L.C. (2014) Relevant areas of functioning in children with cerebral palsy based on the International Classification of Functioning, Disability and Health coding system: a clinical perspective. Journal of Child Neurology, http://dx.doi.org/10.1177/0883073814533005. I participated in the study design, the data extraction, the linking of the concepts identified in the charts to the ICF-CY, the data analysis, and the interpretation of the data. I contributed significant manuscript writing. I wrote the first vi  draft of the manuscript and worked on the revisions of the manuscript. Co-author contributions were as follows: Mâsse L.C. collaborated in the design of the study, wrote part of the manuscript, reviewed the manuscript for intellectual content and critically reviewed the manuscript.   Paper 5 ─ Schiariti V., Mâsse L.C. (2014) Relevant areas of functioning in children with cerebral palsy based on the International Classification of Functioning coding system: from whose perspective?. European Journal Paediatric Neurology, http://dx.doi.org/10.1016/j.ejpn.2014.04.009.  I participated in the study design, the data analysis, and the interpretation of the data. I contributed significant manuscript writing. I wrote the first draft of the manuscript and worked on the revisions of the manuscript. Co-author contributions were as follows: Mâsse L.C. collaborated in the design of the study, wrote part of the manuscript, reviewed the manuscript for intellectual content and critically reviewed the manuscript.   Paper 6 ─ Schiariti V., Selb M., Cieza A., O’Donnell M. (2014) International Classification of Functioning, Disability and Health Core Sets for children and youth with cerebral palsy: a consensus meeting. Developmental Medicine and Child Neurology (in press). I participated in the study design, the recruitment of participants, the organization of the meeting, and the presentation of the data during the meeting. I also wrote the first draft of the manuscript and worked on the revisions. Co-authors contributions were as follows: Selb M., and Cieza A., collaborated in the design of the study. Selb M. wrote the first draft of sections of the manuscript. Cieza A., O'Donnell M. reviewed the manuscript for intellectual content and were responsible for critically revising the manuscript.  vii    The following Ethics Board approvals and Ethics certificates were obtained: The study included in chapters 3 and 4 “Toward the development of the ICF Core Sets for children with cerebral palsy: a global expert survey”, was approved by the University of British Columbia Children’s and Women’s Research Ethics Board. Certificate number: CW09-0123 / H09-0128.  The study described in chapters 3 and 4 “He does not see himself as being different”: children and caregivers’ perspectives on relevant areas of functioning in cerebral palsy, was approved by the University of British Columbia Children’s and Women’s Research Ethics Board. Certificate number: CW12-0069/H12-00677.  The study included in chapters 3 and 4 “Relevant areas of functioning in children with cerebral palsy based on the International Classification of Functioning, Disability and Health coding system: a clinical perspective.”, was approved by the University of British Columbia Children’s and Women’s Research Ethics Board. Certificate number: CW12-0289/H12-02935.      viii  Table of Contents  Abstract .................................................................................................................................... ii Preface ...................................................................................................................................... iv Table of Contents .................................................................................................................. viii List of Tables ............................................................................................................................. x List of Figures..........................................................................................................................xii List of Abbreviations ............................................................................................................. xiii Acknowledgements ................................................................................................................. xvi Dedication .............................................................................................................................xviii Chapter  1: Introduction...........................................................................................................1 Chapter  2: Review of Literature..............................................................................................6 2.1 Cerebral Palsy (CP) .................................................................................................6 2.2 The ICF Framework ............................................................................................... 13 2.3 ICF Core Sets ........................................................................................................ 27 2.4 Study Rationale...................................................................................................... 30 2.5 Study Purpose ........................................................................................................ 31 Chapter  3: Methodology ....................................................................................................... 33 3.1 Study I. Systematic Review.................................................................................... 33 3.2 Study II. Expert Survey Study ................................................................................ 40 3.3 Study III. Qualitative Study.................................................................................... 46 3.4 Study IV. Clinical Study ........................................................................................ 51 3.5 Comparative Appraisal of Preparatory Phase Studies ............................................. 53 ix  3.6 Consensus Meeting ................................................................................................ 53 Chapter  4: Results and Discussion ........................................................................................ 60 4.1 Study I. Systematic Review.................................................................................... 60 4.2 Study II. Expert Survey Study ................................................................................ 75 4.3 Study III. Qualitative Study.................................................................................... 89 4.4 Study IV. Clinical Study ...................................................................................... 105 4.5 Comparative Appraisal of the Four Preparatory Studies ....................................... 110 4.6 Consensus Meeting .............................................................................................. 120 4.7 Practical Applications of the ICF Core Sets for Children and Youth with CP ....... 133 Chapter  5: Conclusion ........................................................................................................ 138 5.1 Overall Significance and Contributions ................................................................ 140 5.2 Strengths and Limitations .................................................................................... 141 5.3 Applications of the ICF Core Sets for Children and Youth with CP ...................... 144 5.4 Future Directions ................................................................................................. 145 Bibliography .......................................................................................................................... 147 Appendices ............................................................................................................................ 176  x  List of Tables Table 4-1  Study I – Characteristics of Included Papers ....................................................... 61 Table 4-2  Study I – Age Groups Represented in Included Papers ....................................... 62 Table 4-3  Study I – Distribution of Contents of the 12 Most Used Multiple-Item Measures by ICF-CY Components ............................................................................................................ 64 Table 4-4  Study I – Representation of ICF-CY Chapters Included in the 12 Most Used Multiple-Item Measures ............................................................................................................ 67 Table 4-5  Study I – Relevant Areas of Functioning Represented in the Papers ................... 69 Table 4-6  Study II – Experts’ Characteristics, N=193......................................................... 76 Table 4-7      Study II – Relevant Areas of Functioning Covered by the Experts ..................... 78 Table 4-8  Study II – Professional and Age-Group Comparisons at the ICF-CY Chapter level   .......................................................................................................................... 81 Table 4-9  Study III – Characteristics of Children and Caregivers Participating in the Interviews  .......................................................................................................................... 90 Table 4-10  Study III – Distribution of ICF-CY Chapters by Children and Caregivers .......... 92 Table 4-11  Study III – Distribution of ICF-CY Chapters by Age-groups .............................. 93 Table 4-12 Study III – Relevant Areas of Functioning Described by the Children and Caregivers  ........................................................................................................................ 101 Table 4-13  Study IV – Sample Characteristics, Chart Review, N=60 ................................. 106 Table 4-14 Study IV – Relevant Areas of Functioning Identified in the Chart Review ....... 108 Table 4-15  Distribution of Categories Identified in the Four Preparatory Studies by ICF-CY Components  ........................................................................................................................ 111 xi  Table 4-16  ICF-CY Categories Identified in All Four Preparatory Studies Organized by ICF-CY Components and Chapters................................................................................................. 112 Table 4-17  List of Most Frequent ICF-CY Categories Identified in Each Preparatory Study ...    ........................................................................................................................ 116 Table 4-18   ICF Core Sets for Children and Youth with CP ............................................... 124  xii  List of Figures Figure 2-1  ICIDH Model ..................................................................................................... 14 Figure 2-2  ICF Model. Adapted for CP ............................................................................... 15 Figure 2-3  Functioning and Disability Constructs within the ICF Model ............................. 17 Figure 2-4  Alphanumeric Codes of ICF-CY Framework, Example ...................................... 20 Figure 2-5  Distribution of Categories in the ICF-CY by Components .................................. 21 Figure 2-6  Application of the ICF Model in CP ................................................................... 23 Figure 2-7  ICF Research Branch Methodology for ICF Core Sets Development, Adapted for Children and Youth with CP ..................................................................................................... 28 Figure 2-8  ICF Core Sets for Children and Youth with CP Aged 0-18 Years, Project Schematic  .......................................................................................................................... 30 Figure 3-1  Study I – Search Strategies, Screening, and Linking to the ICF-CY .................... 35 Figure 3-2  Study II – Recruitment and Sampling Strategy ................................................... 43 Figure 3-3  Consensus Meeting – Recruitment of Participants .............................................. 55 Figure 3-4 Consensus Meeting Voting Process ─ Part I ....................................................... 58 Figure 3-5 Consensus Meeting Voting Process ─ Part II ..................................................... 59 Figure 4-1  Functional Profile of a Child Using the Common Brief ICF Core Set for Children and Youth with CP .................................................................................................................. 136      xiii  List of Abbreviations AACPDM; American Academy of Cerebral Palsy and Developmental Medicine AC; Alarcos Cieza AK; Anne Klassen b; body functions (as per ICF and ICF-CY) BC; British Columbia BFMF; Bimanual Fine Motor Function CAPE; Children's Assessment of Participation and Enjoyment CFCS; Communication Function Classification System CHQ; Child Health Questionnaire CI; confident interval CIHI; Canadian Institute for Health Information CIHR; Canadian Institutes of Health Research COPM; Canadian Occupational Performance Measure CP; Cerebral Palsy CPQOL; Cerebral Palsy Quality of Life Questionnaire for Children d; activities and participation (as per ICF and ICF-CY) DSM-IV; Diagnostic and Statistical Manual of Mental Disorders version IV e; environmental factors (as per ICF and ICF-CY) FAQ; Gillette Functional Assessment Questionnaire GAS; Goal Attainment Scaling GMFCS; Gross Motor Function Classification System GMFM; Gross Motor Function Measure xiv  h; health HRQOL; Health Related Quality of Life I; interviewer ICD-10; International Classification of Diseases version 10 ICF; International Classification of Functioning, Disability and Health ICF-CY; International Classification of Functioning, Disability and Health children and youth version ICIDH; International Classification of Impairments, Disabilities and Handicaps ID; identification IMPACT-S; Activity limitation and participation restriction questionnaire  KS; Karen Sauve KSCREEN; KIDSCREEN MACS; Manual Ability Classification System nc; not covered (as per ICF and ICF-CY) nd; not definable (as per ICF and ICF-CY) PALS; Participation and Activity Limitation Survey PEDI; Pediatric Evaluation of Disability Inventory PEDSQL; The Pediatric Quality of Life Inventory PEM-CY; Parent-report measure of the participation and environment of children and youth  pf; personal factors (as per ICF and ICF-CY) PODCI; Pediatric Outcomes Data Collection Inventory PRS; Physician's rating scale QOL; Quality of Life xv  QUEST; Quality of Upper Extremity Skills Test RCT; randomized clinical trial ROM; Range of Motion s; body structures (as per ICF and ICF-CY) SF-12®; Short Form-12® Health Survey SHHC; Sunny Hill Health Centre for Children SRS; Systematic Review System® UN; United Nations US; United States  VABS; Vineland Adaptive Behavior Scale VS; Veronica Schiariti WG; working groups WHO; World Health Organization WHODAS 2.0; WHO Disability Assessment Schedule  xvi  Acknowledgements I offer my enduring gratitude to my supervisors, colleagues and staff at Sunny Hill Health Centre for Children, the Developmental Neurosciences & Child Health research centre at the Child and Family Research Institute, at the University of British Columbia, who have supported me and inspired me to continue my work in the field of childhood disability. Particular thanks go to my dissertation committee members Drs. Anne Klassen, Alarcos Cieza, Maureen O’Donnell, and in particular to my main supervisors Robert Armstrong and Louise Mâsse who were very supportive throughout the project. Especially I want to thank Louise Mâsse for her understanding and tireless support throughout the writing process. I thank you for your dedication, for all the time and commitment you invested to allow the completion of my project.   I also want to thank the members of the ICF Research Branch of the WHO German Collaborating Centre for the Family of International Classifications for their unconditional support and guidance throughout this project. Especially I want to thank Alarcos Cieza, for introducing me to this project; I appreciate your encouragement and kindness.  I also want to express my sincere gratitude to all the children, caregivers and professionals who participated in the qualitative and expert survey studies for their invaluable contribution. In particular, I want to thank the experts, who participated in the consensus meeting; your enthusiasm and contribution throughout the discussions led to a successful meeting.  I am grateful to the Canadian Institutes of Health Research (CIHR) for their financial support through a Doctoral Research Award. I am also grateful to the Sunny Hill Health Centre for Children Foundation and Child Health BC for their financial support. I also express my xvii  gratitude to the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM) for their financial support through a Research Grant to conduct the consensus meeting. Special thanks are owed to my family; to my parents and siblings who have always been with me despite the geographical distance. Especially to my lovely husband who has accompanied me and supported me throughout my years of education, and to my beautiful and caring daughter, who has taught me more about child development than any book.  Finally I want to thank all the children and the families who have shared with me their experiences, they have been a constant inspiration and my main motivation to keep learning and improving the services we provide.                 xviii  Dedication My dissertation is dedicated to the many children I have met throughout my professional career. The experiences I have gained through working with children with special needs have changed me as a person. They have made me laugh and cry – sometimes all at once.  I have witnessed that regardless of the circumstances, children keep the innocence, imagination, laughter and curiosity of childhood. They challenged my beliefs, knowledge, skills, and education, showing me that there is always something to discover and learn. They taught me to pay more attention to what matters to them.  They challenged me to find better ways to assist them. And most importantly, they showed me that all of us have some challenges and limitations; yet, with the proper support and attitude we can all live a fulfilling life.  Some of them have left us too soon; I will never forget them.  I offer my modest contribution to science to all of you.     “Whoever touches the life of the child touches the most sensitive point of a whole which has roots in the most distant past and climbs toward the infinite future.”  (Dr. Maria Montessori)     1  Chapter  1: Introduction In the field of childhood disability, it is not uncommon for children to present with identical chronic health conditions and associated physical impairments, yet varying functional abilities. Some of those children may be well integrated in their schools and communities, participating in the same activities as their peers, while others may be isolated with limited opportunity for participation.  Similarly, caregivers of children with comparable disabilities may describe vastly different experiences related to their day-to-day lives and interactions with the education, health and social services. Some caregivers are content; they describe positive experiences. Others struggle; they feel overwhelmed by caring for a child with a disability.  Explaining this dichotomy – and identifying the contributing factors – is my primary motivation for the research project described in this dissertation.  The target population of this dissertation is children and youth aged 0 to 18 years with a diagnosis of Cerebral Palsy (CP).  The overall goal of this project was to create a “tool”:  The International Classification of Functioning, Disability and Health (ICF) Core Sets for children and youth with CP.  This tool describes the functional profile of children and youth with CP while considering the individual characteristics of each child and the environmental aspects that facilitate or hinder their day-to-day functioning.    In this dissertation, functioning is defined as what a child can or cannot do every day, including physical abilities and social participation. Daily activities or day-to day activities are defined as tasks that children perform regularly at home, at school, and/or in the community (e.g., dressing, learning, playing, socializing).       Worldwide, CP is the leading cause of severe physical disability in childhood (Koman, Smith, & Shilt, 2004); thus it is critical to gain insight into the factors impacting functioning of 2  children and youth with this disorder. The prevalence of CP is 2 to 2.5 per 1,000 children in developed countries and has remained stable for the last decades (Andersen et al., 2008; Boyle et al., 1996; Cans, 2000; Cans, De-la-Cruz, & Mermet, 2008; Odding, Roebroeck, & Stam, 2006). CP is a permanent movement and posture disorder which cause activity limitations and is often accompanied by other non-motor disturbances (e.g., sensation, perception, cognition, communication, behavior, seizure disorders) (Rosenbaum et al., 2007). Although the key characteristics of CP relate to motor limitations, children with CP face other non-motor challenges. The latest definition described CP as a complex condition in which the motor disorders are often accompanied by disturbances of sensation, perception, cognition, communication and behavior, seizure disorders as well as secondary musculoskeletal problems (Rosenbaum et al., 2007). The clinical presentation may vary from mild to severe; one third of children with CP demonstrate severe impairments in motor functions (Cans et al., 2008).  CP is a life-long disorder (Mesterman et al., 2010) that accompanies children throughout their life trajectories.  Changes in presentation, secondary impairments and functional implications vary as children grow and transition from infancy, school-age, and adulthood (P. L. Rosenbaum et al., 2002; Tieman et al., 2004). As such, children and youth with CP face variable challenges in performing day-to-day activities (Parkes, McCullough, & Madden, 2010; Rosenbaum et al., 2007), including tasks related to mobility (e.g., transfers and locomotion) (Beckung & Hagberg, 2002; Dallmeijer, Scholtes, Becher, & Roorda, 2011; Hagberg, Hagberg, Olow, & van Wendt, 1996; Koman et al., 2004; Wichers, Hilberink, Roebroeck, van Nieuwenhuizen, & Stam, 2009), self-care (e.g., dressing and toileting) (Beckung & Hagberg, 2002), and participation in social activities (Beckung & Hagberg, 2002; Kang et al., 2012; Noreau et al., 2007; Shikako-Thomas et al., 2013). Moreover, half of the individuals with CP use 3  assistive devices such as braces, walkers, or wheelchairs to help develop or maintain mobility (Boyle et al., 1996; Hagberg et al., 1996; Koman et al., 2004; Palisano et al., 2003). Children’s participation in daily activities depends not only on their personal characteristics; rather, also on the environment (e.g., physical, family, societal) where the activity is performed. Researchers have shown that for children and youth with CP, personal factors such as motivation and preferences are key characteristics that influence the child’s involvement in daily activities (Majnemer et al., 2010; Majnemer, Shevell, Law, Poulin, & Rosenbaum, 2010). Highly motivated children may engage in more challenging activities in areas of mobility, communication, self-care and socialization. Thus, low motivation may influence the child’s functional potential adversely. Furthermore, Verchuren et al. (Verschuren, Wiart, Hermans, & Ketelaar, 2012) have shown that personal characteristics of children with CP - as well as environmental factors - explain the child’s participation in physical activity. Special attention has been given to factors that influence participation of children and youth with CP in leisure and recreational activities (Kang et al., 2010; Livingston, Stewart, Rosenbaum, & Russell, 2011; Majnemer et al., 2008; Majnemer et al., 2010; Palisano et al., 2011; Ramstad, Jahnsen, Skjeldal, & Diseth, 2012; Stewart et al., 2012). Palisano et al. (Palisano et al., 2011) provided evidence of the importance of allowing physical accommodations and adapting the task to enable participation of youth with limitations in physical activity. Understanding the internal and external factors that influence functioning in children and youth with CP will aid in the planning of more effective interventions and improve delivery of services. For example, implementing interventions that enhance children’s motivation might encourage them to engage in more challenging daily activities, while improving their adherence to treatment.  4  In order to describe the functional abilities of children and youth with CP and the contextual factors that positively and negatively influence functioning, this dissertation is based on the ICF conceptual framework (World Health Organization, 2001). More specifically, its derived pediatric version for children and youth (World Health Organization, 2007), which incorporates the interactions between the health condition, the personal characteristics of the child and the environmental factors. The ICF (World Health Organization, 2001) offers a framework for understanding functioning and disability from a bio-psychosocial perspective, comprehensively. This bio-psychosocial model of functioning and disability includes four components: 1) body functions and body structures; 2) activities and participation; 3) personal factors and 4) environmental factors (World Health Organization, 2001). In 2007, World Health Organization (WHO) published the pediatric version of the ICF (ICF-CY) (World Health Organization, 2007) which includes all of the categories of the ICF (adult version) and added child-relevant categories, with expanded descriptions of existing ICF categories.  The ICF-CY codebook consists of 1685 so-called categories (units of analysis) (World Health Organization, 2007). The large number of categories limits its utility in the clinical setting; professionals do not find it easy to incorporate in their daily practices. To improve its application, the classification must be tailored to the needs of different users, which is the primary motivation behind the development of the ICF Core Sets (Cieza et al., 2004; Bickenbach et al., 2012). Specifically, the development of Core Sets uses an evidence-based methodology to identify the most relevant categories from the entire set of categories. To date, no Core Sets have been developed for children. To fill this gap, I led the development of the ICF Core Sets for children and youth with CP, which I describe in detail in this dissertation. I adapted the evidence-based methodology endorsed by the WHO for children and youth (Bickenbach et al., 2012). 5  The overall objective of this dissertation is to identify which ICF-CY categories best represent the functional profile of children and youth with CP aged 0 to 18 years of age, encompassing all sub-types and functional categories of CP. Specifically, I gathered evidence from the perspective of the researcher, experts, clinicians and clients to identify what areas of functioning are the most relevant in children and youth with CP. Subsequently, I presented this evidence to an international group of experts who relied on their expertise for the selection of the final ICF-CY categories for inclusion in the ICF Core Sets for children and youth with CP.    6  Chapter  2: Review of Literature This chapter includes a thorough review of the literature related to the main themes covered in this dissertation. The central themes of this dissertation are CP, the ICF-CY, and the ICF Core Sets for children and youth with CP. Firstly, this chapter describes the evolution of the definition of CP, and focuses on the developmental and functional aspects of CP. Secondly, this chapter details the origins of the ICF framework and the ICF-CY. It also provides an overview of the ICF-CY coding system and highlights utility, applications and limitations of the classification.  Finally, this chapter ends with the introduction of the ICF Core Sets for children and youth with CP and describes the need for this ICF-CY-based tool.  2.1 Cerebral Palsy (CP) 2.1.1 Defining CP CP is a life-long neurodevelopmental disorder that affects the child’s developmental trajectory and functional abilities. Defining a neurodevelopmental disorder like CP poses a major challenge as it lacks a specific diagnostic bio-marker typically available for biomedical disorders (e.g., diabetes) (Rosenbaum & Rosenbloom, 2012). Thus, for over 150 years, several attempts to define CP have been proposed (Morris, 2007). The 2007 revised definition of CP by Rosenbaum and colleagues (Rosenbaum et al., 2007) expands on previous working definitions (Bax, 1964; Bax, Flodmark, & Tydeman, 2007; Longo & Ashwal, 1993; Morris, 2007), defining CP as follows: “Cerebral Palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often 7  accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems” (Rosenbaum et al., 2007, p. 9) The current definition of CP aids in differentiating CP from other neurologic entities, highlighting the functional impact of the disorder.  For example, this definition emphasizes that the underlying movement and posture disorders cause activity limitations; thus, the absence of limitations in day-to-day activities excludes the diagnosis of CP.  The addition of a functional concept/construct to the definition of CP is a major contribution, encouraging professionals to address not only the underlying musculoskeletal dysfunctions (biological impairments) but also the child’s functional capabilities.  2.1.2 CP– Clinical Presentation and Prevalence Central nervous system abnormalities associated with CP can occur in the prenatal, perinatal or postnatal periods (Nelson & Ellenberg, 1978). Children born at term account for half of all children with CP (Cans et al., 2008). The diverse clinical presentations of CP in children and youth reflect the various underlying causal pathways and etiologies (Eunson, 2012; Stanley, Blair, & Alberman, 2000). The clinical presentations of CP depend on the magnitude, extent, and location of the insult that causes irreversible damage to the brain, and the ability of the central nervous system to adapt after the insult. The spectrum of motor and associated non-motor disorders and the severity of the clinical presentation may vary, from minor motor problems to multiple severe problems causing the child to be fully dependent for their daily activities (Himmelmann, Beckung, Hagberg, & Uvebrant, 2006). Specifically, more than 50% of children with CP can walk without assistance while 25% cannot walk.  Thirty percent of children with CP have intellectual disability. Neurological problems are common and include sensory impairment of the arms (97%), impairment of visual perception (20-40%), seizure disorder (35%), and 8  hydrocephalus (9%). Learning disability and activity limitations are associated with the degree of cerebral involvement. Urinary incontinence is common (23.5%) in severe clinical presentations (Koman et al., 2004). The clinical description of CP has usually been based on anatomical distribution (e.g., monoplegia, diplegia, hemiplegia, quadriplegia) or muscle/movement abnormalities (e.g., spastic, dyskinetic, ataxic, mixed).  The diagnosis of CP is usually confirmed at the age of 2 to 3 years, when the child fails to reach expected motor milestones. However, in minor clinical presentations CP could go undiagnosed until the child reaches school-age. Conversely, a child with a severe presentation may be diagnosed early in infancy (6 to 12 months). In western countries, the estimated prevalence of CP is 2 to 2.5 per 1,000 children (Andersen et al., 2008; Blair & Watson, 2006; Cans et al., 2008; Caplan et al., 2008; Eunson, 2012; Himmelmann, Hagberg, & Uvebrant, 2010; Paneth, Hong, & Korzeniewski, 2006) and it  has remained stable for the last 40 years. In Canada, the prevalence of CP is similar to other western countries (ranging from 1.8 to 2.6 per 1,000 children); slight variations are observed by province (Oskoui, Joseph, Dagenais, & Shevell, 2013; Robertson, Svenson, & Joffres, 1998; Smith, Kelly, Prkachin, & Voaklander, 2008). Although some Canadian provinces have had CP registries in place for many years (e.g., Quebec), other provinces like British Columbia (BC)  have only recently began the registry process (Shevell, Dagenais, & Oskoui, 2013). In BC (Canada), the CP prevalence is estimated to be 2.68 per 1,000 children (Smith et al., 2008).  Knowing that 962,259 children aged 0 to 19  years live in BC (as per BC Stats July 2012) (Statistics, 2013), and applying a rate of 2.68 per 1,000 children, it is estimated that there are currently 2,579 children aged 0 to 19 years affected by CP in BC.  The same rate of 2.68 per 1,000 children can be applied to those 2,579 children to estimate the age-group distribution of 9  children with CP in BC as follows: 606 children are aged 0-<5 years, 1,227 children are aged 5 to <15 years, and 746 are aged 15 to 19 years.  Overall a large number of children, worldwide and in Canada, are affected by CP. Given the complexity of their disorders; children with CP use multiple health and educational resources on a daily basis (Majnemer, Shevell, Hall, Poulin, & Law, 2010; Palisano et al., 2003; Tieman, Palisano, Gracely, & Rosenbaum, 2004). Management options include physiotherapy, occupational and speech therapy, orthotics, device-assisted modalities, pharmacological intervention, and orthopaedic and neurosurgical procedures (Koman et al., 2004). Gaining a better understanding of the functional abilities and challenges children with CP encounter everyday is essential to help these children reach their functional potential, to improve their quality of life and to provide the appropriate resources.     2.1.3 Developmental Motor Trajectories of Children with CP  Typical motor skill acquisition evolves sequentially in children from birth to adolescence.  However, the developmental motor trajectory of children with CP was not well understood until a decade ago (Hanna et al., 2003; P. L. Rosenbaum et al., 2002). Evaluations of children with CP stratified by Gross Motor Function Classification System (GMFCS) (Palisano et al., 1997) levels have shown that children with CP follow different developmental motor trajectories by level of severity (Hanna et al., 2003; Hanna, Bartlett, Rivard, & Russell, 2008; P. L. Rosenbaum et al., 2002; Smits et al., 2013). Consequently, motor growth curves have been developed to evaluate these unique developmental motor trajectories of children with CP from birth to adulthood. The motor growth curves provide a reference point for clinical assessment and management of children with CP.  They allow for longitudinal tracking of gross motor capacity, targeted interventions and realistic goal setting by GMFCS level. The information provided by the motor 10  growth curves is useful for service providers and families seeking to describe the functional trajectory of children with CP overtime. Groups in Canada and the Netherlands have developed respective curves for children with CP.  Canadian studies reporting these motor curves found a significant decline in motor capacity in adolescents with CP in GMFCS levels III-V (Bartlett, Hanna, Avery, Stevenson, & Galuppi, 2010; Hanna et al., 2009). In contrast, a Dutch study found no evidence of decline in motor capacity overtime (Smits et al., 2013). The difference between the Canadian and the Dutch motor trajectories in children with CP might be explained by variations in statistical models, as the models in the two studies included different covariates and assumptions. In addition, differences might be explained by variation in sample characteristics and health service practices that are likely quite different by countries (Bartlett et al., 2010; Hanna et al., 2003; Hanna et al., 2008; P. L. Rosenbaum et al., 2002; Smits et al., 2013).”Due to the variability in clinical presentations and motor trajectories among children with CP, one must consider all areas of functioning when seeking to describe a child with CP.  2.1.4 Classification of Functional Abilities in Children with CP  The need to assess and classify functional abilities among children with CP has driven the development of gross and fine motor instruments, which have become common practice for measuring and classifying motor abilities in this population (Eliasson et al., 2006; Palisano et al., 1997;Russell et al., 2000). Various tools have been developed and validated to measure and classify gross and fine motor skills. One such tool - the Gross Motor Function Measure (GMFM) (D. J. Russell et al., 2000)- was developed for clinical use and evaluates change in gross motor function in children with CP. Items on the GMFM span the spectrum from activities in lying and rolling up to walking, running and jumping skills (D. Russell, 2002;Russell et al., 2000).  11  In addition four invaluable classification tools have been developed: 1) The GMFCS facilitates the classification of gross motor function based on walking and sitting abilities and the need for assistance (Palisano et al., 1997; Palisano et al., 2000; Palisano, Cameron, Rosenbaum, Walter, & Russell, 2006; Palisano, Rosenbaum, Bartlett, & Livingston, 2008). Specifically, the GMFCS describes the gross motor function of children and youth with CP on a 5 level classification system.  The focus of the GMFCS is on determining abilities and limitations in gross motor function by assessing whether the child can sit, walk, and use a wheelchair (if applicable). Emphasis is on usual performance in home, school, and community settings (e.g., what children do). Children who have motor problems similar to those classified in "Level I" can generally walk without restrictions but tend to be limited in some of the more advanced motor skills. Children whose motor function has been classified at "Level V" are generally very limited in their ability to move themselves around even with the use of assistive technology (Palisano et al., 1997); 2) The Manual Ability Classification System (MACS) describes fine motor abilities of children and youth with CP organized on a 5 level classification. Children classified at “Level I” can generally perform difficult manual tasks with fair speed and accuracy. Children whose fine motor function has been classified as “Level V” are usually very limited in their ability to handle objects and require total assistance (Eliasson et al., 2006; Morris, Kurinczuk, Fitzpatrick, & Rosenbaum, 2006); 3) The Bimanual Fine Motor Function (BFMF) (Beckung & Hagberg, 2002) scale also describes fine motor skills but it assesses bimanual as well as asymmetrical abilities and classifies abilities in a 5 point bimanual classification system. Children who are able to manipulate without restrictions are classified as “Level I” and children who can only hold are classified as “Level V”; and 4) Finally, while fine and gross motor abilities are common limitations among children with CP, communication limitations are of significant importance in 12  this population as well. The Communication Function Classification System (CFCS) (Hidecker et al., 2011) has been developed to categorize daily communication performance in children with CP (Hidecker et al., 2011; Hidecker et al., 2012). The CFCS classifies communication abilities in a 5 point scale from level I (most able) to the level V (least able). Children who can send and receive information with familiar and unfamiliar persons effectively and efficiently are classified as “Level I”, on the contrary children who seldom send and receive information even with familiar persons effectively are classified as “Level V” (Hidecker et al., 2011; Hidecker et al., 2012). Until now, most of the tools for children with CP have focused on motor and communication issues. For the most part they have remained silent about environmental and personal factors which can facilitate or limit day-to-day functioning. For example, Palisano and colleagues showed that environmental settings (e.g., home, school and community) impact the mobility options of children with CP, as well as their need for assistive technology and caregivers’ assistance for transfers (e.g., pushed in a wheelchair or carried). The authors found that children with CP were more dependent on adult assistance for mobility when outdoors or in the community versus when at school; they were less dependent on adult assistance for mobility at home.  King et al., purported that geographical location, mainly where the children resided, was associated with different patterns of participation in recreation and leisure activities (King et al., 2013). Specifically, children with CP who lived in the United States (US) participated less in active physical activities compared to children with CP who lived in Canada and Australia. Conversely, children with CP who lived in Canada were more engaged in self-improvement activities (e.g., doing a chore) than those who lived in US and Australia. Furthermore, evidence supports that children with CP have unique personal characteristics (e.g., motivation) (Majnemer 13  et al., 2010) and unique supportive social networks (family, friends, extended family, teachers, etc) which may affect their engagement in daily activities (Kang et al., 2012), involvement in therapeutic interventions and response to interventions.  As described above, several aspects of functioning in children and youth with CP have been measured or found to influence specific functional abilities. To date though, the classification tools address much targeted aspects of functioning (fine motor, gross motor, and communication) and none have incorporated the role of the environment or personal characteristics of children with CP. This important gap is addressed in this dissertation.   2.2 The ICF Framework 2.2.1 Origins of the ICF Framework   In 1946, the WHO defined “health” as a state of complete physical, mental and social well-being; not merely the absence of disease (Constitution of the World Health Organization, 1946). Interestingly, at that time no health model fully incorporated all those dimensions in the proposed definition of health. On the contrary, the biomedical model used at that time defined disability as an observable deviation from biomedical norms of structure or function that directly results from a disease, trauma or other health condition (Bickenbach, Chatterji, Badley, & Ustun, 1999). In 1980, the WHO published the International Classification of Impairments, Disabilities and Handicaps (ICIDH) (World Health Organization, 1980), which linked impairments, disabilities and handicaps to a specific disease or disorder. (Figure 2.1) The model was criticized for focusing on “disease” and “disorders” and failing to consider other factors that contribute to an individual’s health status and capacity to function in everyday life.  The ICIDH model was mainly operationalized following the biomedical model that implied a unidirectional pathway from disease to disability or handicap. Although the unidirectionality of this model was useful in 14  some areas of health care, mainly related to acute management of health conditions (e.g., diagnosis, acute treatment, initial management), its application to chronic health conditions was limited (Simeonsson, 2011). As a consequence, an international collaboration was formed in early 1990 to address these issues and revise this model. The newly proposed model underwent cultural adaptation, including feedback on suitability of its terms from professionals, policy makers and persons with disabilities before it was published in 2001.    Figure 2-1  ICIDH Model  The 2001 ICF model (World Health Organization, 2001) is based on a bio-psycho-social model which was first proposed by Engel in 1977 (Engel, 1977). The bio-psychosocial model provided a framework to integrate the biological, psychological and social domains to define health and disability. Precisely, the bio-psychosocial model incorporates the social construction to the biomedical model which views disability not as a person’s attribute but as a complex collection of conditions and relationships that are created by the social environment. For example, consider a child who uses a wheelchair and will not be able to access the school if there are no ramps or elevators. A social analysis will locate the problem in the design of the building, not in the child’s health condition. Hence, the management of this problem will require social action. The responsibility lies with the society at large to make the environmental modifications necessary for the full participation of children with disabilities in social life. In the bio-15  psychosocial model, disability is viewed as involving an interaction of the individual with a particular health condition and their community or society. As shown in Figure 2.2, the social components are represented by the “contextual factors” including personal and environmental factors. Personal factors refer to gender, age, level of education and lifestyle, and the environmental factors which can be physical, social, cultural or institutional in nature. The ICF model proposes that contextual factors influence and modify other components such as level of activity and participation, and need to be considered when assessing functional performance of individuals with a health condition.  In Figure 2.2, the bi-directional arrows highlight the dynamic aspect of the model and denote the interaction between all the elements of the model. It is recognized that a change in any component of the model can modify other components and affect elements of health, disability and functioning (World Health Organization, 2001).  Figure 2-2  ICF Model. Adapted for CP   (World Health Organization, 2007, p. 17, applied to CP)  16  In the bio-psychosocial model, the components of body functions, and activities and participation are independent of each other, in the sense that there is no assumption that the presence of an impairment lead immediately or eventually to the presence of limitations in  activities, or to a restriction in participation. Items in each component potentially apply to any person, whatever the health status.  2.2.2 Overview of the ICF Framework The ICF proposes to incorporate functional information with diagnostic information, leading to the identification of specific activity limitations in a diagnosis of CP, for example. In recent decades there has been a growing interest in complementing diagnostic classifications (e.g., International Classification of Diseases version 10 [ICD-10], and the Diagnostic and Statistical Manual of Mental Disorders version IV [DSM-IV]) with functional classifications (e.g., ICF) for complete information on health-related conditions. The addition of functional information to medical diagnoses is particularly useful for encouraging treatments and interventions that improve the person’s level of functioning, even if those treatments do not address the underlying health condition (Dekker, 1995). When used in combination, functional and diagnostic classifications complement each other, For example, the ICF classification system complements the ICD-10 diagnostic classification system by systematically assigning codes to components of health (e.g., what a person with a disease or disorder can or cannot do).  The ICF’s unique contribution is that it enables the user to record useful profiles of individuals’ functioning, disability and health in various domains. These domains include the components body functions, body structures and activities and participation. Body functions are the physiological functions of body systems (including psychological functions). Body structures are anatomical parts of the body such as organs, limbs and their components. Activity is the 17  execution of a task or action by an individual. The term participation is used to identify the extent of a person’s involvement in different areas of human life, from basic skills (e.g., taking care of one’s physical care) to highest skills (education, employment, social and political involvement).  The differences between capacity to perform a task and participation in a social activity in the environment where a person lives are the main distinction between these two concepts (World Health Organization, 2001). Within the ICF functioning is defined as an umbrella term encompassing all body structures, body functions, and activities and participation. On the contrary, disability is used as an umbrella term for impairments, activity limitations and/or participation restrictions. ICF also includes contextual factors, namely personal and environmental factors that interact with all these constructs (World Health Organization, 2001). (Figure 2.3)    Figure 2-3  Functioning and Disability Constructs within the ICF Model  18  Overall, the ICF provides a framework to code a wide range of information about health and uses a standardized common language permitting communication about health across health care disciplines and fields.  2.2.3 The ICF– Children and Youth Version (ICF-CY) In 2007, WHO published the ICF, Disability and Health for Children and Youth (ICF-CY) (World Health Organization, 2007). The ICF-CY contains constructs which describe functioning in children, a feature lacking in the adult ICF version (Lollar & Simeonsson, 2005; Placek et al., 2005; Simeonsson et al., 2003). The ICF-CY builds on the existing ICF; it adds codes, descriptions, and qualifiers to encompass developmental aspects relevant to children and youth (from birth to 18 years) (Simeonsson, 2010). Similar to the ICF, the unit of classification for the ICF-CY provides a functional profile of the child.  The development of the ICF-CY took special consideration to aspects that are essential to children and youth. The ICF-CY considers children’s growth and development to guide the identification and adaptation of the content for the ICF-CY, including areas of cognition and language, play, disposition and behaviour (Simeonsson, 2010). Particular attention was given to four key issues in the derivation of the ICF-CY including: 1) the familial context as the child’s functioning is dependent on continuous interactions with the family or other caregivers in a close, social environment. Family interactions frame the acquisition of various skills over the first two decades of life, and play a central role in building the physical and social environment of the child. Therefore, the functioning of the child cannot be seen in isolation; rather, in relation to the child in the context of the family (World Health Organization, 2007); 2) child development from birth to adulthood as body functions, body structures and acquisition of skills varies tremendously with individual differences in growth and development. Children follow their own 19  trajectories, acquiring milestones at their own pace. Importantly, lags in the emergence of functions should not be considered abnormal solely based on the expected age of acquisition of that milestone.   These lags may reflect delayed development in an otherwise normal and healthy child. The ICF-CY incorporated the concept of delay as a qualifier to account for developmental delays. This qualifier allows for documentation of the magnitude of delays in the emergence of functions, structures and capacity, and in the performance of activities and participation in a child.  It is recognized that the severity of the qualifier codes may change over time (World Health Organization, 2007); 3) participation (e.g., playing, reading, learning, and recreational activities) as “involvement in a life situation” represents the societal perspective of functioning. With development, life situations change dramatically - for instance - from solitary play of the very young child to social play, peer relationships and schooling of children at later ages. (World Health Organization, 2007); and 4) the broader environmental context (home, school and community) as the environment can have a significant impact on child functioning. Environmental factors are defined as “the physical, social and attitudinal (attitudes of persons) environment in which people live and conduct their lives”. The environments of children and youth can be viewed in terms of a series of successive systems surrounding them, from the most immediate to the most distant, each differing in its influence as a function of the age or stage of the developing child. The nature and extent of environmental support will vary according to the age of the child and their developmental age (World Health Organization, 2007). 2.2.4 Defining the Alphanumeric Codes of the ICF-CY Framework The ICF-CY provides alphanumeric codes called “categories”, arranged in a stem/branch/leaf scheme within the following components: body functions, body structures, activities and participation and environmental factors. The letters b, s, d and e - which refer to 20  the components (body functions, body structures, activities and participation and environmental factors respectively) of the classification - are followed by a numeric code starting with the chapter number (one digit), followed by the second level (two digits), the third and fourth level (one digit each). Every component consists of chapters (first level) which represent a broad area of functioning. This is followed by the second (two digits), third (one digit), and fourth (one digit) level categories which provide greater specificity about the area of functioning (World Health Organization, 2007). For example, a child who requires assistance for self care would be assigned the code d57021: d5 for self-care (first/chapter level), d570 for looking after one’s health (second level), d5702 for maintaining one’s health (third level), d57021 for seeking advice or assistance from caregivers (fourth level). (Figure 2.4) The component personal factors does not have alphanumeric codes assigned yet.    d; activities and participation Figure 2-4  Alphanumeric Codes of ICF-CY Framework, Example  The ICF-CY consists of 1,685 categories, 30 chapter level categories, 380 second level categories, 1,094 third level categories, and 181 fourth level categories. The distribution of ICF-CY categories by components is shown in figure 2.5.    21   ICF-CY: International Classification of Functioning, Disability and Health children and youth version, d; activities and participation Figure 2-5  Distribution of Categories in the ICF-CY by Components  Additionally, the ICF-CY categories incorporate a qualifier which denotes the severity of the problem, from values ranging from 0=no problem to 4=complete problem. Categories should be accompanied by at least one qualifier to provide a description of an individual functional profile.  Finally, the negative aspects of the environment are qualified in terms of barriers; whereas, positive values are denoted as facilitators (World Health Organization, 2007). 22  2.2.5 Utility and Applications of the ICF and ICF-CY The intended applications of the ICF and ICF-CY are not limited to classification tools; rather, as universal frameworks for research, education, and clinical practice as well  (World Health Organization, 2007). Specifically, the ICF-CY can be used by providers, consumers and anyone concerned with the health, education, and well-being of children and youth. Since its publication in 2007, direct clinical application of the ICF-CY in paediatric populations has been sparse (Adolfsson, Malmqvist, Pless, & Granuld, 2011; Battaglia et al., 2004; Bjorck-Akesson et al., 2010; Bjornson, Zhou, Christakis, & Stevenson, 2012; Hollenweger, 2010; Ketelaar et al., 2010; Leonardi et al., 2012; Martinuzzi, Carraro, Petacchi, Pasqualotti, & Betto, 2012; McCormack, Harrison, McLeod, & McAllister, 2011; Ogonowski, Kronk, Rice, & Feldman, 2004; Pless, Ibragimova, Adolfsson, Bjorck-Akesson, & Granlund, 2009; Rowland et al., 2012; Salghetti et al., 2009; Simeonsson et al., 2003; Wright, Rosenbaum, Goldsmith, Law, & Fehlings, 2008). Most published studies use the ICF model as a research framework and they fail to apply the ICF-CY coding system.  This disparity illustrates the considerable challenge researchers and clinicians face in applying the extensive list of alphanumeric codes included in the classification. A solution to this problem is the development of ICF-CY-based tools such as the ICF Core Sets, consisting of shortened lists of alphanumeric codes. The Core Sets make the ICF-CY practical and feasible to apply in day-to-day clinical practice.  Figure 2.6 shows an example of the application of the ICF-CY framework in CP where relevant aspects of functioning can be aligned with the components body structures, body functions and activities and participation. Relevant contextual factors can be highlighted as well under 23  environmental and personal factors. Information gathered on clinical assessments from children, youth, their caregivers and from direct observations can be summarized as shown in figure 2.6.   ICF-CY; International Classification of Functioning children and youth version, CP; cerebral palsy, ROM; range of motion  Figure 2-6  Application of the ICF Model in CP  Examples of the applications of the ICF and ICF-CY classifications are found in clinical, research, administration settings and policy-making activities.  The ICF Core Sets manual for clinical practice, for example, illustrates how the functional profile of adults with different chronic conditions can be coded to clarify diagnostic information and serve as the basis for planning interventions (Bickenbach, J., Cieza, A., Rauch, A., & Stucki, G, 2012). The ICF (adult version) codes can describe the effect of physiotherapy treatments as well.  In acute hospital settings, the ICF codes can be used to record precise information on patients’ functioning, 24  including the documentation of intervention goals, functional trajectories over time and the assessment of outcomes of physiotherapeutic interventions (Huber, Tobler, Gloor-Juzi, Grill, & Gubler-Gut, 2011). Furthermore, the ICF-CY guides family-centered care in clinical practice, incorporating the key role that families (environment) play in impacting the child’s function. A family-centred care approach helps children achieve greater functional gains than are seen with traditional impairment-based therapy (Ketelaar, Vermeer, Hart, van Petegem-van Beek, & Helders, 2001; D. Stewart, Rosenbaum, & CanChild Centre for Childhood Disability Research, 2003). Finally, in clinical intervention, the ICF-CY encourages targeting functional outcomes as the ultimate goal of physical or behavioural therapies - such as performing daily life activities - rather than a sole focus on impairment-based interventions (Rosenbaum & Stewart, 2004). In the research setting, selected ICF-CY categories may be used to standardize the description of functional profiles of participants, allowing comparisons across studies and guiding targeted outcome measure selection based on ICF-CY components. Moreover, the ICF-CY suggests including dimensions of activities and participation, and environmental factors in research studies and educational curriculum.  The inclusion of these components captures the complex, interactional nature of the life experiences of children with disabilities and their families (Hollenweger, 2010). The Canadian Institute for Health Information (CIHI) exemplified the research application of the ICF when it conducted the 2006 Participation and Activity Limitation survey (PALS) (Statistics Canada, Social and Aboriginal Statistics Division, 2007). The study questionnaire was based on the ICF categories, covering impact of health conditions and environmental factors in activities of daily living. The results of the PALS survey helped characterize functional abilities and limitations of the Canadian paediatric population. For instance, they describe levels of participation in children with neurodevelopmental disorders in 25  school settings (Mâsse, Miller, Shen, Schiariti, & Roxborough, 2012; Mâsse, Miller, Shen, Schiariti, & Roxborough, 2013); information that may guide service delivery planning and promote environmental modifications to facilitate full integration. In the US, the ICF has been used to compare different epidemiological methods of surveillance and screening to determine the scope of childhood disability (Simeonsson et al., 2003).  Administratively, information pertaining to eligibility, service provision, reimbursement and follow-up can be recorded with the ICF-CY codes. Stahl and colleagues (Stahl, Granlund, Gare-Andersson, & Enskar, 2011) mapped child health and education information using the ICF-CY of children in Sweden.  The authors found that the ICF-CY offered not only a coding system useful for statistical purposes but also a language useful to evaluate resources provided at the individual and population levels. The utility of the ICF-CY codes for surveillance purposes has been documented as well. Simeonsson et al. (Simeonsson, Scarborough, & Hebbeler, 2006) illustrated that combining ICF-CY functional codes with ICD-10 diagnostic codes provides more information about the prevalence and severity of the conditions.  Most importantly, this information guides resource needs and utilization. When applied to policy, the conceptual framework of the ICF-CY may be used to frame a particular policy focus; such as, children’s right to appropriate technical adaptations for education, or implementation of appropriate transportation policies for children with disabilities (Hollenweger, 2010; Leonardi et al., 2010). 2.2.6 Limitations of the ICF Framework  Although the ICF and its conceptual model are widely accepted by multidisciplinary international communities, there remain critiques related to some of its primary claims regarding the nature of impairment and disability. Imrie (Imrie, 2004) pointed out that some parts of the ICF model require further conceptual clarification and development: 1) re-defining the nature of 26  impairment; and 2) specifying the content of bio-psychosocial theory. Some of these concerns were echoed by others (Armstrong, 1987; Badley, 2008). According to Imrie (Imrie, 2004), the ICF fails to distance itself from a biological/medical understanding of impairment by defining impairment as “a loss or abnormality of a body part”.  Abnormality is seen as “a significant variation from established statistical norms”, which implies that a disabled body is abnormal because of biological differences. Sociologists (Thomas, 2001) reject this definition.  They suggest that “determining which features of the body or intellectual functioning come to be defined as different from the ‘norm’ is a social question and how these come to be named “impairments” involves social processes and practices” (Thomas, 2001, p. 47-62). In addition, scholars suggest that the ICF should provide more details about the implications of a universalisation as a principle for guiding the development of disability policies (Bickenbach et al., 1999; Imrie, 2004). In the field of childhood disability, the ICF framework faced further criticism related to barriers to clinical implementation. Some experienced professionals identified concerns regarding the practical application of the ICF-CY in day-to-day practice, including: the lack of standard guidelines for its implementation, the lack of explicit indicators for all the domains of the model (personal factors), the overlap between areas of activities and participation, and the overwhelming coding structure  (Darrah, 2008; Granlund et al., 2012; Msall, 2005; Placek et al., 2005).  In response to these critiques, while attempting to improve the accessibility of the ICF in daily practice, the ICF Core Sets have been developed for various adult conditions and functional profiles.  The development of pediatric ICF Core Sets for the most prevalent conditions in childhood - such as CP - remains lacking. 27  2.3 ICF Core Sets The large number of ICF categories limits its utility in practice. To facilitate its application, the ICF must be tailored to the needs of different individual users. This need for individualization is the primary motivation behind the development of the ICF Core Sets (Bickenbach et al., 2012). An ICF Core Set is a shortlist of ICF categories that are considered most relevant for describing the functioning of an individual with a particular health condition.  The ICF Core Set creates a functional profile (e.g., hand function) in different settings.  Currently, 33 ICF Core Sets have been developed for various health conditions, including a range of rehabilitation stages (acute, post-acute, and chronic) and for vocational rehabilitation (Danermark et al., 2010; Grill, Bronstein, Furman, Zee, & Muller, 2012; Bickenbach et al., 2012). All have been developed for adult conditions; none target pediatric conditions.  2.3.1 ICF Core Sets Development Methodology This dissertation describes the development of the ICF Core Sets for children and youth with CP. The development of ICF Core Sets followed the methodology endorsed by the WHO (Bickenbach et al., 2012) (see figure 2.7). It consists of two parts: Part 1 the preparatory phase which includes gathering evidence from four independent studies to understand functioning from the perspectives of: researchers by conducting a systematic review of the literature (Study I), experts in the field of childhood disability by surveying international experts (Study II), children and youth with CP and their caregivers by conducting a qualitative study (Study III), and clinicians by reviewing clinical charts of children and youth with CP (Study IV).  Part II includes an international consensus meeting where experts from all six WHO regions reviewed the information gathered in the preparatory phase and subsequently participated in a structured 28  decision-making process to develop the first version of the ICF Core Sets for children and youth with CP.     (Bickenback et al. 2012, p. 15, adapted for CP)  *Phase II was not part of this dissertation. Figure 2-7  ICF Research Branch Methodology for ICF Core Sets Development, Adapted for Children and Youth with CP      Note that the ICF Core Sets development differs substantially from “ICF code sets” initiatives as the ICF code sets aim to have a much more limited content and each ICF code set developed today employed different development methodologies (Adolfsson, 2011; Rowland et al., 2012; Simeonsson, 2009). While “ICF code sets” have been developed for participation in everyday life situations,  for students using augmentative and alternative communication 29  strategies, and for develpmental stages, none of them have addressed a specific health condition (Adolfsson, 2011; Rowland et al., 2012).  2.3.2 The Need for ICF Core Sets for Children and Youth with CP Currently, there is no universal approach to describe the functional profile of children and youth with CP comprehensively. This gap can be filled by applying the ICF framework in everyday assessments, specifically by applying ICF Core Sets for this population. Hence, it is essential to develop ICF Core Sets for children and youth with CP which capture their developmental trajectories and standardize the characterization of their functional abilities.  The application of ICF Core Sets will encourage professionals to consider beyond the physical abilities of the child, incorporating the environmental and personal factors that influence functioning.  The ICF Core Sets for children and youth with CP will describe systematically the child’s functional profile including strengths and limitations in perfoming day-to-day activities. Moreover, the categories of the ICF Core Sets can be used as a “common language” in interdisciplinary assessments of a child or youth with CP. ICF Core Sets will also encourage all team members to consider every potentially relevant aspect of functioning, even in areas of functioning in which a given professional is not a specialist. This dissertation describes the evidence-based process that led to the ICF Core Sets for children and youth with CP. As this is the first Core Sets development project for children and youth, the methodology was adapted to integrate the children and caregivers’ perspectives and incorporates the developmental aspects uniquely attributed to children and youth. (Figure 2.8)  30   ICF: International Classification of Functioning, Disability and Health  Figure 2-8  ICF Core Sets for Children and Youth with CP Aged 0-18 Years, Project Schematic  2.4 Study Rationale As the most common cause of severe physical disability in childhood (Koman et al., 2004), CP is one of the most studied conditions in childhood disability. International experts in the field of pediatric disability have focused on numerous aspects of CP, ranging from its definition and causal pathways to diverse outcomes (e.g., quality of life [QOL] and participation). Additionally, many national and international networks/collaborations on CP have formed with the aim to improve its diagnosis and management (e.g., European CP registries, 31  NeuroDevNet Canadian CP registries) (NeuroDevNet, 2012; Cans, 2000; Cans et al., 2007), prevent its secondary complications (hip dislocation surveillance) (Elkamil et al., 2011), improve function and participation (King et al., 2013; Law et al., 2011; Michelsen et al., 2009), describe QOL (Dickinson et al., 2007; Ketelaar et al., 2010), and predict aerobic fitness (Verschuren, Bloemen, Kruitwagen, & Takken, 2010), among others. Moreover, the international community has focused research efforts on the delivery of appropriate comprehensive, cost-effective services for this population as well.  Despite these contributions, what remains missing in the field of CP is the application of a “universal language” to describe functioning - as well as the contextual factors that influence functioning - in this population. To continue to advance the field of CP, it is essential that we use a standardize language, the “ICF-CY language”, to describe the functional profile of children and youth with CP. The systematic use of the ICF-CY language across studies will facilitate comparability of results, ultimately improving therapeutic interventions. Therefore, there is an urgent need for an ICF-CY-based tool, such as the ICF Core Sets, for this population to promote the application of the ICF-CY in practice. In response to this need, this dissertation describes the development of the ICF Core Sets for children and youth with CP.  2.5 Study Purpose The overall objective of this dissertation was to identify which ICF-CY categories best represent the functional profile of children and youth with CP aged 0 to 18 years of age, including all types of CP and all levels of function. To address this broad objective, the specific aims and research questions of this dissertation were: Study I – Systematic review. Summarize and describe the content of measures used in studies with children with CP, using the ICF-CY as a reference. The research question for this study 32  was: What areas of functioning should be considered from a research perspective as candidate categories for the development of the ICF Core Sets for children and youth with CP? Study II – Expert survey study. Summarize the statements of experts in the field of childhood disability regarding relevant areas of functioning using the ICF-CY as a reference. The research question for this study was: What areas of functioning should be considered from an expert perspective as candidate categories for the development of ICF Core Sets for children and youth with CP? Study III – Qualitative study. Identify strengths and limitations in functioning important to children and youth with CP, and quantify these characteristics using the ICF-CY coding system. The research question for this study was: What areas of functioning should be considered from the children with CP and their caregivers’ perspective as candidate categories for the development of ICF Core Sets for children and youth with CP? Study IV – Clinical study. Summarize the areas of functioning covered in clinical assessments using the ICF-CY as a reference. The research question for this study was: What areas of functioning should be considered from the clinical perspective as candidate categories for the development of ICF Core Sets for children youth with CP? The findings of these studies were then presented at a consensus meeting.   Experts were tasked to select the most relevant ICF-CY categories to be included in the Comprehensive and Brief ICF Core Sets for children and youth with CP.     33  Chapter  3: Methodology This chapter describes the methodology used to develop the ICF Core Sets for children and youth with CP. The methodology employed in this dissertation followed the recommendation set by the ICF Research Branch of the WHO (Bickenbach et al., 2012) but adapted it to the pediatric context. This chapter details the methodology applied in four preparatory studies (Study I – Systematic review, Study II – Expert survey study, Study III – Qualitative study, and Study IV – Clinical study). This is then followed by a description of the methodology employed to aggregate the findings of the four preparatory studies. Finally, this chapter ends by describing the process applied during the consensus meeting where the first version of the ICF Core Sets for children and youth with CP was developed.  3.1 Study I. Systematic Review  3.1.1 Study Design A systematic review of the literature was conducted to identify measures clearly defined and used as outcome measures in studies that included children with CP to and describe the content of those measures using the ICF-CY language.    3.1.2 Search Strategy For the systematic review, the following databases were searched: Medline, PsycINFO, Embase, Central and CINAHL. Thesaurus terms and keywords were used to identify relevant articles.  Examples of terms searched include the following: “cerebral palsy, treatment/assessment outcome, performance test, questionnaire, health status, and function or/motor or/skills, health related quality of life (HRQOL) and QOL”, (searches available in Appendix A). Inclusion criteria consisted of the following: study published from January 1998 to March 2013, study focused on children and/or youth with CP, study with specific designs 34  (randomized controlled trials [RCT], before/after studies, cross-sectional studies, longitudinal observational studies, qualitative studies), and study published in English. Systematic reviews, validity/reliability studies, phase I/II clinical trials, secondary analysis of published data, and protocols were excluded.  3.1.3 Processing of Articles Search results (n=862 citations) were exported to a reference system (RefWorks) and duplicates were removed. Abstracts were independently screened by two people Veronica Schiariti (VS) and Karen Sauve (KS) to determine whether the study should be included in the review. A third person Anne Klassen (AK) resolved any conflicts. Screening was performed using the Systematic Review System (SRS®, Mobious-Analytic). A stepwise screening process was applied, first the inclusion/exclusion criteria were verified by reviewing all title and abstracts (n=698). Then full articles for the included abstracts (n=314) were retrieved and inclusion/exclusion criteria were again verified resulting in the identification of 231 articles, full list available. (Figure 3.1)           35   Figure 3-1  Study I – Search Strategies, Screening, and Linking to the ICF-CY  (Schiariti et al., 2014a) 36  3.1.4 Data Extraction and ICF-CY Linking  A four-step procedure for data processing was followed: 1) extracting study information – for all the studies (n=231) average age of participants, age range, gender, type of CP, GMFCS levels, study design, outcome measures, self/ proxy report, and country where the study was conducted was extracted; 2) classification of outcome measures to determine whether it was a multiple-item or single-item measure, out of the 289 outcome measures identified, 129 were multiple-item and 160 were single-item measures; 3) outcome measures retrieval, 96 out of the 129 multiple-item measures were retrieved (reasons for no retrieval included:  language other than English, adaptation of an original measure, adhoc questionnaires, and copyright issues preventing use) and all of the single-item measures;  and 4) linking to the ICF-CY, 78 out of 96  multiple-item were linked (reason for not linking included:  structure of the measure) and all 160 single-item measures. (Figure 3.1) Two health professionals working independently linked each item to the domains of the ICF-CY using the coding process described below and then resolved disagreements by consensus. Before linking each measure, the purpose of the measure and its manual (when possible) were reviewed to determine whether the individual items or the main domains assessed by the measure could be linked to the ICF-CY categories. Only original versions of the measures were linked. Some measures were not suitable for linking (e.g., Goal Attainment Scaling [GAS] as the content varies from child to child). If a measure had different age-specific versions, the most frequently used version was linked (e.g., PedsQL school-aged version was only linked).  Finally, some measures were not available due to copyright, and thus only the main domains of those measures as described in the articles were linked (e.g., WeeFIM). The reliability of the linking process was assessed using the Kappa coefficient 37  (Cohen, 1960) which was computed in SAS (SAS Institute Inc.). The overall inter-coders reliability of the linking process was 0.74 (95% confidence interval 0.73-0.75).  3.1.5 ICF-CY Linking  “Linking” refers to the methodology used to translate the health-related information into the ICF language (ICF and ICF-CY categories). This linking methodology was developed originally to link questionnaires for health-status assessment to the ICF (Cieza, 2002). It has since been updated (Cieza, 2005b) and taken on new applications over the last eight years to include linking Health status, HRQOL and QOL questionnaires to the ICF and ICF-CY (Cieza, 2005a; Escorpizo, Cieza, Beaton, & Boonen, 2009; Fava, Muehlan, & Bullinger, 2009; Fayed, Schiariti, Bostan, Cieza, & Klassen, 2011; Gradinger, Glassel, Bentley, & Stucki, 2011; Petersson, Simeonsson, Enskar, & Huus, 2013; Schiariti, Fayed, Cieza, Klassen, & O'Donnell, 2011; Schonrich et al., 2006; Sigl, Cieza, van der Heijde, & Stucki, 2005; Fayed, Klassen, & Schiariti, 2012) and linking data collected during clinical assessments to the ICF (Aiachini et al., 2010; Finger et al., 2011). Additionally, the revised methodology has guided the linking of qualitative data generated during focus groups and individual interviews (Avila, Cieza, Anaya, & Ayuso-Mateos, 2012; Glassel et al., 2011) and in international electronic surveys performed with health professionals (Escorpizo et al., 2011a; Gradinger, Boldt, Hogl, & Cieza, 2011; Scheuringer, Kirchberger, Boldt, Eriks-Hoogland, Rauch, Velstra et al., 2010).  In this dissertation the health-related information was linked to the ICF-CY. The linking methodology consists of two main steps. First, concepts are identified within the health-related information to be translated to the ICF-CY. Secondly, those concepts are linked to the ICF-CY. The identification of concepts varies slightly depending on the origin of the information to be translated. In questionnaires for health-status assessment, the concepts reflect the themes targeted 38  in each of the items of the questionnaires. A single item may contain more than one concept. For example, item 5 of the Short Form- 12 (SF-12®) Health Survey (QualityMetric) (Ware, Kosinski, & Keller, 1996) “During the past week, how much did pain interfere with your normal work (including both work outside the home and housework)” contains three different concepts: “pain”, “work outside the home”, and “housework”.   Despite the open-ended nature of qualitative data collected via focus groups, patient interviews, or electronic surveys, the process of concept identification parallels that used with questionnaires. However, for questionnaires the concepts within items are identified, while for qualitative data the concepts within “meaning units” are identified. A meaning unit is defined as a specific unit of text of either a few words or a few sentences with a common theme (Kvale, 1996). For example, consider the meaning units identified in an extract from a focus group “…I don’t sleep at night because I have pain in my back and pain in my neck…” contains three different concepts: “problems sleeping at night”, “pain in back”, and “pain in neck” (Glassel et al., 2011).   When linking clinical assessments, concepts refer to the aims with which the clinical assessments were performed. For example, when pulse rate is assessed to measure “exercise tolerance”, this aim is considered the meaningful concept of the clinical assessment “heart rate”.  The second step of the methodology consists of linking the identified concepts to the ICF-CY. The concepts must be linked to the most representative ICF-CY category or categories. First, all concepts are assigned a letter b, s, d and e, which refer to the components of the classification body functions, body structures, activities and participation, environmental factors, respectively.  Subsequently, a numeric code is assigned starting with the chapter number (one digit).  For further detail each concept receives a second (two digits), third, and fourth level (one 39  digit each) code depending on the specificity of the concept. For example, the concept of playing with an adapted toy is coded as: d880-engagement in play and e11521-(adapted toy).  The breakdown of the coding for the latter assigned code is as follows: e1-Products and technology (first level/chapter level), e115- Products and technology for personal use in daily living (second level), e1152- Products and technology used in play (third level), e11521-Adapted products and technology for play (fourth level). The component personal factors (pf) does not have assigned categories yet. Concepts related to this component are organized in themes (Geyh et al., 2011).  Finally, concepts that are too general are assigned the code “not definable” (nd).  For example, “quality of life” is a broad construct, too general to code; thus, it is coded as “nd-qol”. If the concept is not captured by the ICF-CY classification, then the label “not covered” (nc) is assigned.   Without fail, both steps of the linking methodology must be performed by two trained health professionals independently of each other. This rule ensures that two independent results of the linking process are generated. These results are compared. The reliability of the linking process is evaluated by calculating kappa coefficients based on the two independent linking results in order to indicate the degree of agreement between the two health professionals. Disagreement regarding the ICF-CY categories selected during the linking process is resolved by structured discussion and by an informed decision from a third expert. The result of applying the linking methodology is a list of ICF-CY categories that is equivalent in content to the original health-related information. 40  3.1.6 Data Analysis For each of the identified instruments, the frequency a measure had been reported and the frequency with which its items/domains addressed the b, s, d, e and pf components, and other concepts linked to nc and nd was calculated. If an ICF-CY category was assigned repeatedly in a measure, the category was counted only once. Similar to previous studies (Avila, Cabello, Cieza, Vieta, & Ayuso-Mateos, 2010; Cieza, 2005a; Escorpizo et al., 2011; Geyh, Cieza, Kollerits, Grimby, & Stucki, 2007; Gradinger, Glassel et al., 2011; Schiariti et al., 2011; Sigl et al., 2005; Stucki et al., 2008; Velstra, Ballert, & Cieza, 2011), ICF-CY categories were used to identify and quantify the most relevant areas of body functions and body structures, activities and participation, and environmental factors for children and youth with CP. Descriptive statistics was used to calculate the frequency a category was represented in the studies. ICF-CY categories included in less than twenty percent of the outcomes were disregarded; the same arbitrary cut-off used in previous ICF Core Sets studies (Gradinger, Glassel et al., 2011).  3.2 Study II. Expert Survey Study 3.2.1 Study Design A cross-sectional, open-ended survey was administered to international experts who participate in the assessment, management and follow-up of children and youth with CP in the health, education and social service sectors.  3.2.2 Study Sample Respondents to the survey represented those who have expertise in providing care or service for children and youth with CP. In this study, experts were defined as professionals who fulfilled the following criteria: 1) have a professional background in one of the following areas: 41  pediatrics, developmental pediatrics, pediatric rehabilitation physician, pediatric neurology, pediatric neurosurgery, orthopedic surgery, occupational therapy, physiotherapy, speech and language pathology, rehabilitation nursing, social worker and special education teachers; 2) have at least 5 years of experience in working with youth and children with CP (including clinical, educational, research and/or administrative roles); 3) focuses of practice, among those whose practice was mainly in pediatric physical disabilities; and 4) respondents had to be fluent in English as the survey was only administered in English. Experts were recruited from the six WHO regions which include the Eastern Mediterranean, South-East Asia, Western Pacific, The Americas, Africa and Europe. 3.2.3 Sampling Methodology Experts were initially identified by contacting international and national organizations in the field of disability, childhood physical disability, and CP. In total, 217 organizations were contacted (full list shown in Appendix B). These organizations were asked to provide names and mailing lists of potential experts which were subsequently contacted via email.  Organizations that declined to release their mailing lists, received a synopsis of the study which they could email to their members. An invitational letter was posted on the Child & Family Research Institute website. In addition, invitational letters were sent to researchers who published an article on CP from 1998 to 2009. Finally, contacted experts were asked to identify other experts. All professionals who met the inclusion criteria and agreed to participate in the survey constituted the expert pool. In total, 430 experts registered to be part of the study, seven experts were ineligible to participate, the final expert pool consisted of 423 participants. In the next step, a random sample representing each profession and each WHO region was drawn from this expert pool. (Figure 3.2) This was done to assure that the different professional perspectives as well as 42  the regional perspectives were represented. The sampling ensured that at most 25 experts were selected from each WHO region by main professions. In total, 25 therapists and 25 physicians from both the Americas and European regions, and 25 therapists from the Western-Pacific region were randomly selected. All other professionals in those regions were included, as well as all participants from the Eastern Mediterranean, South-East Asia, and African regions. 247 experts were invited to participate in the survey. (Figure 3.2)43    *WHO, World Health Organization, ‡Random sample taken from the Americas, Western Pacific and European  regions..  Figure 3-2  Study II – Recruitment and Sampling Strategy   (Schiariti et al., 2014b)44   3.2.4 Data Collection Protocol All selected experts (n=247) received an email with the electronic link to the survey (Scantron survey tool). The survey included a letter with background information, the actual questionnaire, and instructions for completing the survey. The participants had six weeks to respond and reminders were sent out by email every two weeks. Recruitment lasted from February 1st to April 30th 2010. Answers were kept anonymous by assigning an ID number to the participants.   3.2.5 Survey Questionnaire The survey was an open-ended self-administered questionnaire that included two parts. In Part I, basic demographic information of the participant, the professional background, and years of experience were collected. Part II included questions covering all the ICF-CY components, for example “If you think about the physical and social environment and the living conditions of children and youth with CP, what about the environment is supportive or hindering for them?” (Full questionnaire is shown in Appendix C). A special effort was made to focus on positive aspects of children and youth with CP. The component activities and participation was divided into strengths and limitations. The component environmental factors was divided into facilitators and hindering factors. As answers were expected to differ by developmental ages, questions were broken down in the following age groups: younger than 6 years of age and equal or older than 6 years of age. Answers were not limited in terms of word length although respondents were instructed to be brief and concise.  The survey was first reviewed and piloted by professionals with different backgrounds (two pediatricians, one occupational therapist, and one physiotherapist) which resulted in 45  modifying the instructions and clarifying wording of the questions.  The revised survey was sent to 11 professionals to assess clarity of instructions and questions, text space and length; however only five of the 11 professionals provided feedback (clinician scientist n=1, physical therapist n=1, physiotherapist n=1, teacher n=1, developmental pediatrician n=1). 3.2.6 Data Processing Firstly, answers were independently reviewed by two professionals (VS, KS) to identify the themes provided by the experts. Secondly, the two professionals independently linked 50% of the themes (n=4,853 categories) to the ICF-CY categories using established linkage rules (Cieza, 2005b) described in section 3.1.5.The remaining answers were coded by the most senior health professional (VS). Finally, all disagreements among the two coders were reviewed and if a consensus was not reached a third professional (AC) arbitrated the disagreement. To evaluate the reliability of the linking process, the overall percentage of agreement was calculated based on the two independent linkage versions. Answers that were too vague and could not be assigned a second or third/fourth level code, where only assigned a chapter level code.  3.2.7 Data Analysis Similar to previous ICF Core Sets studies (C. Avila et al., 2009; Gradinger, Boldt, Hogl, & Cieza, 2011; Scheuringer, Kirchberger, Boldt, Eriks-Hoogland, Rauch, Velstra et al., 2010), ICF-CY categories were used to identify and quantify the most relevant areas of body functions and body structures, activities and participation, environmental and personal factors for children with CP. Descriptive statistics were used to describe the number of times an ICF-CY category was mentioned by more than 15% of the experts, arbitrary cut-offs used in previous studies to determine relevant ICF categories (Escorpizo, Finger, Glassel, & Cieza, 2011a; Gradinger et al., 2011). To determine if patterns of answers varied by children’s age group and/or professional 46  background of respondents, logistic regressions were conducted using chapter level codes as the dependent variables with age (<6 years of age; ≥ 6 years of age) and profession as independent variables. Only professional categories with more than 50 participants were included in this part of the analysis. Logistic regression analyses were computed with SPSS using a p<.05 to determine significance level.  3.3 Study III. Qualitative Study 3.3.1 Study Design A qualitative study was conducted using semi-structured interviews with caregivers of children with CP and with interviews among children with CP themselves. As self-report is strongly recommended in research involving children, children who could effectively communicate (verbally or using assistive communication devices) were interviewed. In addition, proxy information was collected by interviewing caregivers of children who were unable to communicate and/or were too young to participate in an interview. In some cases, the child and his/her caregiver were both interviewed.  3.3.2 Study Sample A total of 32 interviews were conducted, 10 dyads (child and his/her caregivers) were invited to participate in the interviews. A child participating in individual interviews had to meet the following inclusion criteria: 1) diagnosis of CP made by a health professional; 2) age 8 to 18 years; and 3) the child could effectively communicate. A caregiver participating in individual interviews had to meet the following inclusion criteria: 1) had a child with a diagnosis of CP made by a health professional; and 2) age of the child was 2 to 18 years.  47  3.3.3 Data Collection Recruitment of participants was conducted at community health centres in BC and at the Sunny Hill Health Centre for Children (SHHC) in BC. Occupational therapists and physiotherapists at different community health centres were contacted and asked whether they would be willing to identify possible candidates for the study. In addition, posters with information about the study and how families could enroll in the study were displayed at BC Children’s Hospital, and SHHC. Finally, information was posted on the Child & Family Research Institute website.  The identification of potential participants was performed by health professionals (Occupational therapists and Physiotherapists) who were in contact with these families.  Health professionals who worked at the SHHC or practiced in community health centres received an invitation letter by mailed with information about the study and were asked to refer potential participants for this study. Health professionals who agreed to refer participants for the qualitative study assessed participants’ suitability to enter the study (e.g., the inclusion criteria were verified) and asked them at their visit whether they would be willing to be contacted by the study coordinator about the study. If caregivers agreed to be contacted, the health professionals asked them to sign the “consent to be contacted form” which allowed a member of the research team to contact the families. The health professional provided potential families with an invitation letter and a copy of the consent form.  Families were then contacted by the study coordinator to learn more about the study and determine whether they would be interested to participate in the study.  Those who agreed to participate in the study completed a telephone screener to review eligibility criteria. In addition, families could contact directly the study 48  coordinator by email or by phone to learn more about the study and how they could participate in the study. Eligible participants were then scheduled an in-person interview.   The interviews took place locations convenient to the study participants, their homes, at a community health centre or the SHHC. The interviews lasted approximately 30 to 45 minutes. Children were interviewed alone except for those who required assistance from their caregiver (e.g., child using an assistive communication device). Data collection started after the participant signed the assent/consent form. Prior to each interview, a brief questionnaire measuring socio-demographic and health information was administered. A pediatric physiotherapist (KS) who has ample experience in working with children and youth with CP, and is very familiar with the ICF-CY coding system, performed the interviews. Each interview was digitally recorded and transcribed verbatim. 3.3.4 Interviews and Participants’ Information After the participants completed the consent forms, the caregiver were asked to provide some basic demographic information (gender of child, age of child, grade level, and parental education) and some health information about their child.  The following health information was collected: 1) GMFCS level; 2) recent surgeries (post-operative status may influence the child/youth or caregivers’ answers); and 3) list of co-morbidities (epilepsy, intellectual disability, learning difficulties, hearing impairment, and vision impairment). A structured interview based on the components of the ICF-CY was completed by the caregivers and/or child with CP. The interviewer used a series of open-ended questions, for example “Tell me about things you/your child do/es every day, What activities are you/your child able to do?” (Full questionnaire shown in Appendix D).  Interviews with children and caregivers assessed the same dimensions but the questions posed in these interviews were different.  The 49  component personal factors was introduced first in children’s interviews, to facilitate their engagement in the interview.   The content of the interview and the structure of the questions follow the ICF Research Branch methodology (Coenen, Stamm, Stucki, & Cieza, 2012; Glassel et al., 2011; Kirchberger et al., 2010; Bickenbach et al., 2012). The interviews addressed the following five domains which focused on assessing: body functions, body structures, activities and participation, environmental and personal factors. 3.3.5 Data processing After each individual interview audio files were transcribed verbatim. The verbatim transcripts were checked by the interviewer (KS) and the project leader (VS). The data extraction was performed by two health professionals (VS, KS) who were trained in the procedures of coding the transcripts and in using the ICF-CY classification system.  In the first part of data analysis the transcripts were qualitatively analyzed following a three-step process proposed by Kvale et al. (Kvale, 1996) to condense the interviews into meaningful codes. In the first step, the individual interviews were read through to get an overview of the data collected and to identify important themes and sub-themes from the interviews. In the second step, the data is divided into themes and sub-themes to summarize the information gathered in the interviews. A meaningful theme or sub-theme is defined as a specific unit of text either a few words or a few sentences with a common concept (Kvale, 1996). A meaningful theme does not necessarily follow linguistic grammatical rules but rather discerned a shift in meaning. In the third step, the meaningful themes and sub-themes were coded to ensure that all meaningful units are identified. A sentence or paragraph might contain more than one meaningful concept (theme or sub-themes). 50  In the second part of data analysis, each meaningful theme and sub-theme were linked to ICF-CY categories following the linking rules (Cieza, 2005b) described in section 3.1.5.   3.3.6 Multiple Coding  As per the ICF Research Branch methodology (Bickenbach et al., 2012), the Qualitative analysis (first part) and the Linking to the ICF (second part) was done by two health professionals (VS, KS) who had previously used the ICF linking rules (Cieza, 2005b). Double coding was conducted as follow: the first 10 transcripts were double coded by both VS and KS; discrepancies were identified, discussed, and resolved and sets of rules were developed; VS coded all transcripts and KS double coded 30% of the transcripts with discrepancies resolved when identified. If the health professionals could not resolve their disagreement, a third expert (AC) helped resolve the discrepancies.  3.3.7 Sample Size Justification Participants were included in this qualitative study until saturation and good representation of the sample were reached (e.g., all GMFCS levels, and age-groups <6 years, ≥ 6 to <14 years, ≥ 14 to 18 years). After each individual interview, the ICF-CY categories mentioned in the interview were summarized.  Saturation was defined in this study as the point during data collection when less than 5% second level ICF-CY categories were added in two consecutive individual interviews. Saturation of data was reached after 32 interviews. 3.3.8 Analysis Coding of the data was done in the N-Vivo 10 software.  The data was summarized by grouping ICF-CY themes identified. Descriptive statistics was used to display the final list of ICF-CY categories. Distribution of categories by participants’ characteristics (child versus proxy, age groups <6 years, ≥ 6 to <14 years, ≥ 14 to 18 years) was made at the chapter level to 51  facilitate presentation of results. Finally, the final list of unique ICF-CY categories mentioned by the participants was calculated. Those categories mentioned more than once in an interview, were not included in this step.    3.4 Study IV. Clinical Study 3.4.1 Study Design A retrospective chart review of data collected in clinical assessments of children and youth with CP was performed. The chart review analyzed clinical encounters made by health professionals (e.g., physicians, physiotherapists or occupational therapists) who see children and youth with CP in their practice or clinic. All the information regarding relevant areas of functioning covered in each assessment was extracted. As children and youth with CP see many health professionals, a retrospective chart review provided a comprehensive overview of their functioning which is usually assessed over time.  3.4.2 Study Sample Children and youth with a diagnosis of CP were identified from the SHHC database. To ensure that the perspective of various health professionals was incorporated all charts from neuromotor related clinics (e.g., Tone management clinic; Feeding clinic; Gait lab; etc) that had at least one clinical assessment conducted between January 1st, 2012 and April 15th,  2013 were reviewed.  To be included in the chart review, the following inclusion criteria had to be met: 1) the child had to have a diagnosis of CP made by a health professional; 2) age of the child, at time of assessment, had to be between 0 and 18 years; and 3) at least one full clinical report and assessment had to be performed in the last 12 months at the SHHC. 52  3.4.3 Data Collection Selection of clinical charts was conducted at SHHC.  Data from all clinical encounters available in the SHHC database were extracted. To avoid duplication of data, only one full report from a professional background was considered for data extraction per chart (e.g., only one report from a Developmental Pediatrician, only one report from a Physiotherapist).  Finally, in order to represent all ages and all types of CP, a quasi-random sample of charts was taken from clinics that mainly assessed a particular age-group (e.g., school-age children mainly assessed in the Gait lab).  The following demographic and health information was collected: gender of child, age of child, type of CP; and GMFCS level (Palisano et al., 2008).  3.4.4 Data Processing The areas of functioning addressed during the clinical encounters were extracted from professional reports. The child’s functional challenges and abilities were recorded using the ICF linking rules described in section 3.1.5.  3.4.5 Data Analysis The distribution of demographic and health information was summarized with descriptive statistics. To identify the most relevant categories identified in clinical encounters, the ICF-CY categories were ranked based on their frequency and then assigned a percentile score (dividing the rank by the total number of categories). The percentile score standardized the identification of most relevant categories in the study. Analysis of the data was done in Excel and SPSS version 18 software.    53  3.5 Comparative Appraisal of Preparatory Phase Studies 3.5.1 Study Design A comparative appraisal of the four preparatory studies was conducted to describe the contribution of each study towards the development of the ICF Core Sets for children and youth with CP.  3.5.2 Data Analysis The distribution of ICF-CY categories, at the second, third and fourth levels, found in the four preparatory studies was summarized with descriptive statistics.  To identify the most relevant categories identified in each of the preparatory studies, each category was assigned a percentile score. To develop percentiles for the ICF-CY categories, the categories were first ranked based on their frequencies. The rank was divided by the number of categories to obtain the percentile score. The percentile standardized the identification of the most relevant categories across studies given that the frequencies varied by studies. Analysis of the data was done in Excel and SPSS version 18 software.  Finally, the ranking percentile scores of the categories across studies were compared.    3.6 Consensus Meeting In keeping with the standard protocol for the development of ICF Core Sets (Bickenbach et al., 2012), an international group of experts were invited to decide on the ICF Core Sets for children and youth with CP.  The consensus meeting was held at SHHC in Vancouver, BC (Canada) in June 2013. 54  3.6.1 Recruitment of Experts Persons who met the following inclusion criteria were considered experts in the field of CP and were eligible to be invited to participate in the consensus meeting: 1) have a professional background in one of the following areas: pediatrics, developmental pediatrics, pediatric rehabilitation medicine, pediatric neurology, pediatric neurosurgery, orthopedic surgery, occupational therapy, physiotherapy, speech and language pathology, rehabilitation nursing, social work or special education; 2) have at least 5 years of experience in working with children and youth with CP; 3) focus of practice was primarily in pediatric physical disabilities. All the experts were required to be fluent in English.  A stratified random sample of experts, representing each profession and each WHO region, was drawn from a pool of experts (Schiariti et al., 2014b) to ensure representation across professions and regions.  From 40 invitations sent out 29 experts agreed to participate and 26 participated in the consensus meeting. To ensure that the development of ICF Core Sets reflects the views of the international community; experts were randomly selected and invited from the six WHO regions: Eastern-Mediterranean, South-East Asia, Western-Pacific, the Americas, Africa and Europe. In addition, as the opinion of parents/caregivers and children and youth with CP were considered essential for the final selection process of the ICF Core Sets, two parents were invited and only one participated at the meeting. (Figure 3.3)  55   Figure 3-3  Consensus Meeting – Recruitment of Participants  WHO= World Health Organization, § Others= Education/teacher and parent, ‡ Random sample taken from the WHO regions: Americas, African, Eastern Mediterranean, South-East Asian, Western Pacific and European regions.  Direct invitations were sent to participants in British Columbia, Canada. In addition, direct invitations were sent to staff members at Sunny Hill Health Centre for Children, Vancouver, Canada.  †Three participants, a special education teacher from the Eastern Mediterranean Region, a developmental pediatrician from the European Region and a parent from the Americas Region, could not attend the meeting due to personal reasons. (Schiariti, Selb, Cieza, & O’Donnell, 2014) 3.6.2 Training and Information Exchange During the meeting, a condensed ICF training was held to familiarize the participants with the ICF framework and classification. Participants were provided a list of the candidate 56  categories, identified in the four preparatory studies, which informed their discussions and served as the starting point for the voting process.  3.6.3 Iterative Decision-Making Process  The ICF Core Sets categories were identified in an iterative decision-making process. In previous ICF Core Sets development projects, a Comprehensive and a Brief ICF Core Set were developed (Danermark et al., 2010; Grill et al., 2012; Bickenbach et al., 2012). The Comprehensive ICF Core Set is intended for use in interdisciplinary assessments, to promote the ICF as a “common language” when describing the functioning of a person and to consider every potentially relevant aspect of functioning, even in areas of functioning in which a given professional is not a specialist. The Brief ICF Core Set is derived from the comprehensive set and can be employed in regular clinical encounters where only a brief assessment is necessary as well as in clinical and epidemiological research (Bickenbach et al., 2012). Similar to previous studies, the expert panel was tasked to develop a Comprehensive and Brief ICF Core Sets for children and youth with CP. In addition; the experts complemented the Brief ICF Core Set with age-specific Core Sets. Specifically, they produced Brief ICF Core Sets for children 0 to <6, ≥6 – <14 and 14 ≥ –18 years of age.  The decision-making process consisted of two major parts.  Part one involved selecting the ICF-CY categories to be included in the Comprehensive ICF Core Set (Figure 3.4) and part two involved deciding on the Brief ICF Core Set (Figure 3.5). The Comprehensive set aimed to include enough categories to describe the prototypical functional profile of children and youth with CP and short enough to be practical for comprehensive, multi-disciplinary assessments. To develop the Comprehensive ICF Core Set, the experts reviewed and voted one by one the ICF-CY categories identified in the four preparatory studies. Three rounds of voting were needed to 57  select the Comprehensive ICF Core Set. For round one and two, consensus agreement among the experts was set at ≥75% for inclusion of the category in the Core Set, and <40% for exclusion. For round three, the cut off was >50% for inclusion and ≤50% for exclusion. (Figure 3.4) Once the Comprehensive ICF Core Set was developed, the experts selected the categories that should be included in the Brief ICF Core Set. The Brief ICF Core Set aimed to include the fewest categories as possible to serve as a minimal international standard for assessing and reporting functioning in the clinical setting and for research. The experts ranked and voted on the categories that are most relevant areas to include in the Brief ICF Core Set. The categories included in the Brief ICF Core Set are relevant for children and youth with CP aged 0 to 18 years, therefore the set was named “Common Brief ICF Core Set”. As this was the first consensus meeting on children and youth, the methodology of part two was adapted to pediatrics. Participants agreed that the developmental stages should be represented in the ICF Core Sets and decided to develop age-specific Brief ICF Core Sets for children and youth below 6, ≥6 – <14 and 14 ≥ –18 years of age.  As a result the ranking and voting procedure was repeated to develop each of the age-specific Brief ICF Core Sets. Specifically, additional categories relevant to a particular age-group were added to the Common Brief ICF Core Set to create the age-specific Brief Core Set. (Figure 3.5)      58    Figure 3-4 Consensus Meeting Voting Process ─ Part I WG; working groups, ICF; International Classification of Functioning, Disability and Health During working groups sessions 1 and 2 participants worked in three small groups, subsequently all participants discussed the list of categories identified as ambiguous (not unanimously included or excluded by the three working groups) during plenary sessions  1 and 2. During plenary sessions 3 and 4, participants considered including specific third or fourth level categories.  (Schiariti, Selb, Cieza, & O’Donnell, 2014) 59     Figure 3-5 Consensus Meeting Voting Process ─ Part II During sessions 5 to 12 all participants independently ranked up to 10 ICF-CY categories per ICF-CY component to be included in each Brief ICF Core Set.   The development of each Brief ICF Core Set consisted of two consecutive rankings, rank A and rank B, and finally setting a cut-off for the final number of categories to be included in the Core Set. (Schiariti, Selb, Cieza, & O’Donnell, 2014)60  Chapter  4: Results and Discussion This chapter reports and discusses the findings of the four preparatory studies –systematic review, expert survey study, qualitative study and clinical study. The presentation of the results and discussion of each preparatory study is followed by the comparative appraisal of the results of the four preparatory studies. Finally, this chapter ends with the results and discussion of the consensus meeting and illustrates a practical application of the ICF Core Sets for children and youth with CP in clinical practice.    4.1 Study I. Systematic Review  Study I aimed to identify areas of functioning important from a research perspective. The systematic review of the literature identified the types of measures that have been used as outcome measures in studies that included children and youth with CP. Subsequently, this systematic review describes the content of those measures using the ICF-CY language. This section reports on the findings of the systematic review. 4.1.1 Articles Characteristics The systematic review identified 231 articles that met the inclusion criteria. The median age of the study sample described in those articles was 8.6 years. The common CP types included in the studies were spastic diplegia and quadriplegia. Overall, 58% of the articles used the GMFCS classification to characterize their study population. The majority of the studies were intervention studies. Proxy report was the predominant data collection method. Most studies were conducted in US, followed by Australia and Canada (see Table 4.1).    61   Table 4-1  Study I – Characteristics of Included Papers  Table 4-1 Study 1 - Characteristics of Included Papers, N=231             (Continued)   Publication year  1998-2003, N (%) 83(35.9) 2004-2012, N (%) 148(64.1) Characteristics of study sample  Gender, male % 59 Age, median (Interquartile range) in years 8.6(4.5) Age range, median  minimum and maximum in  years 4-13 Study Sample Size, N (%)  Group 1 (≤ 20 participants) 82(35.5) Group 2 (21-100 participants) 101(43.7) Group 3 (101-400 participants) 36(15.6) Group 4 (401-900 participants) 12(5.2) Type of CP, N (%) *  Spastic diplegia 154(66.6) Spastic quadriplegia 110(47.6) Spastic hemiplegia 111(48.1) Dystonic 4(1.7) Ataxic 23(10) Others 89(38.5) Total number of papers reporting GMFCS levels, N (%)* 134(58) GMFCS I 96(41.6) GMFCS II 100(43.3) GMFCS III 109(47.2) GMFCS IV 92(39.8) GMFCS V 75(32.5) Study Design  Intervention studies, N (%) 139(60.2)           Randomized controlled trials 44           Before/after design 59           Others 36 Observational studies, N (%) 91(39.4)          Cross-sectional studies 42          Cohort studies 16          Others 33  62   Table 4-1 Study 1 - Characteristics of Included Papers, N=231             (Continued)   Qualitative study, N (%) 1(0.4) Proxy vs self report **  Proxy report, N (%)  219(94.8) Combination proxy and self report, n (%) 28(12.1) Country, N (%)  US 64(27.7) Australia 23(10.0) Canada 23(10.0) United Kingdom 19(8.0) Netherlands 17(7.3) Others 86(37.0) CP;  Cerebral Palsy, GMFCS; Gross  Motor Function Classification System. *% do not add up to 100% as papers included combinations of CP types and combinations of GMFCS levels **do not add up to 100%, some studies use both proxy and self report (Schiariti et al, 2014a)  Many studies covered more than one age group (e.g., preschool, school, adolescent); the distribution by age groups is shown in Table 4.2, which shows that school-aged children were studied most frequently. Table 4-2  Study I – Age Groups Represented in Included Papers  Age groups   Number of papers   Percentage*  Infant,  0 to <12 months 5 2.2 Toddler,  1 to <3 years 50 21.6 Preschool Child,  3 to <5 years 113 48.9 School-aged Child, 5 to <12 years  211 91.3 Adolescent, 12 to <18 years 150 64.9 *may not add up to 100 % as many studies included more than one age group  63  4.1.2 Overview of Measures Out of the 78 multiple-item measures linked to the ICF-CY, the GMFM (Russell et al., 2002) was the most frequently used measure, followed by the Pediatric Evaluation of Disability Inventory (PEDI) (Hayley et al., 1992) and the Child Health Questionnaire (CHQ) (Landgraf et al., 1998).  It is important to highlight that the types of multiple-item measures used as outcome measures in studies with children and youth with CP encompassed a combination of discriminative, predictive and evaluate instruments.    Out of 160 single-item measures identified in this review, ‘‘Mobility of joints’’ was the single-item measure most frequently used, followed by ‘‘spasticity’’ and ‘‘gait pattern’’ (list shown in Appendix E). Table 4.3 provides a list of the 12 multiple-item measures that were used most frequently. The table provides the ICF-CY components that are represented in those measures (Full list showing all multiple-item measures is included in Appendix F section 1). Most of the measures covered the components of activities and participation, and body functions whereas a few, covered most of the ICF-CY components (e.g. CHQ, Pediatric Outcomes Data Collection Inventory (PODCI) (Daltroy, Liang, Fossel, & Goldberg, 1998), Cerebral Palsy Quality of Life questionnaire for children (CPQOL) (Waters, Maher, Salmon, Reddihough, & Boyd, 2005), and KIDSCREEN (The KIDSCREEN Group Europe). The majority of the single-item measures assessed the component body functions (Appendix E).      64  Table 4-3  Study I – Distribution of Contents of the 12 Most Used Multiple-Item Measures by ICF-CY Components Table footnote on next page  Name (Abbreviation)   % representation of ICF-CY component  Brief  description  of measure   B  S  A&P  EF  PF  NC/ND  Nº †   Children's Assessment of Participation and Enjoyment  (CAPE)§ 0 0 100 0 0 0 23 Self-report measure of children's participation in recreation and leisure activities.  Child Health Questionnaire (CHQ)§ 35 0 45 6.7 1.7 1.7 60 QOL instrument on physical, psychosocial functioning and well-being. Canadian Occupational Performance Measure  (COPM)‡ 0 0 100 0 0 0 30 Detects change in a client's self-perception of occupational performance over time. Gillette Functional Assessment Questionnaire (FAQ)§ 11.8 0 88.2 0 0 0 17 Assesses the functional walking level of a child.  Gross Motor Function Measure (GMFM)§ 12 0 88 0 0 0 25 Measures change in gross motor function over time in children with CP. KIDSCREEN (KSCREEN) ‡ 46.7 0 20 13.3 6.7 13.3 15 Assesses children’s and adolescents’ subjective health and well-being,  Pediatric Evaluation of Disability Inventory (PEDI)§ 17.8 0 79.5 2.7 0 0 73 Assesses key functional capabilities/performance (mobility, self-care and social function). The Pediatric Quality of Life Inventory  (PEDSQL)§  30 0 50 15 0 5 20 Multidimensional measure of HRQOL in healthy children, acute and chronic conditions. Pediatric Outcomes Data Collection Inventory (PODCI)§ 13 0 69.6 10.9 2.2 4.3 46 Assesses outcomes in musculoskeletal conditions. Physician's rating scale (PRS)§ 100 0 0 0 0 0 1 Observational scale that evaluate gait. Quality of Upper Extremity Skills Test  (QUEST)§ 71.4 0 28.6 0 0 0 7 Evaluates movement patterns and hand function in CP. Vineland Adaptive Behavior Scales (VABS)§ 13 0 81.5 1.9 1.9 1.9 54 A measure of adaptive behavior from birth to adulthood. 65  §Indicates measure that was linked to the ICF-CY at the item level only; ‡ Indicates measure that was linked to the ICF-CY at the domain level only; †Total number of meaningful concepts without duplications per measure.   Abbreviations: B, body function; S, body structure; A&P, activity and participation; EF, environmental factors, PF, personal factors; ICF-CY, International Classification of Functioning, Disability and Health children and youth version. ND/NC=not definable plus not covered by the ICF-CY; HRQOL, Health Related Quality of Life; CP, Cerebral Palsy, QOL, Quality of Life.   References for all multiple-item measures included in the table: CAPE (King et al., 2004); CHQ (Landgraf et al., 1998); COPM (Law et al., 1998); FAQ (Novacheck, Stout, & Tervo, 2000); GMFM (Russell et al., 2002); KIDSCREEN (The KIDSCREEN Group Europe); PEDI (Hayley et al., 1992); PEDSQL (Varni et al., 2006); PODCI (Daltroy, Liang, Fossel, & Goldberg, 1998); PRS (Maathuis et al., 2005); QUEST (DeMatteo et al., 1992); VABS (Sparrow, Cicchetti, & Balla, 2005). Full list of multiple-item measures is shown in Appendix F section 1.  66  Table 4.4 shows the content of the 12 multiple-item measures that are used most frequently. The table provides the chapter level categories that are represented in those measures for the components body functions, activities and participation and environmental factors respectively (Full list is shown in Appendix F section 2). The component body structures component is not shown as it was not covered by the measures. The measures differed significantly in their representation of the ICF-CY chapters by components. For example, for the component activities and participation the GMFM only covered chapter d4-Mobility compared to the PEDI which included all chapters. Overall, the most prevalent chapters were: b1-Mental functions, d4-Mobility, d5-Self-care and e1-Products and technology. For more detailed information about the ICF-CY content found in each measure see Appendix G.      67   Table 4-4  Study I – Representation of ICF-CY Chapters Included in the 12 Most Used Multiple-Item Measures                    ‡Complete list of multiple-item measures provided in Appendix F section 2. CAPE, Children's Assessment of Participation and Enjoyment; CHQ, Child Health Questionnaire; COPM, Canadian Occupational Performance Measure; FAQ, Gillette Functional Assessment Questionnaire; GMFM, Gross Motor Function Measure; KSCREEN, KIDSCREEN; PEDI, Pediatric Evaluation of Disability Inventory, PEDSQL, The Pediatric Quality of Life Inventory; PODCI, Pediatric Outcomes Data Collection Inventory; PRS, Physician's rating scale; QUEST, Quality of Upper Extremity Skills Test; VABS, Vineland Adaptive Behavior Scale. References for all multiple-item measures included in the table are shown in Table 4.3.  ICF-CY chapters Number of unique concepts represented in the 12 most used Multiple-Item measures‡ Body Functions GMFM PEDI CHQ QUEST PODCI FAQ PEDSQL PRS COPM VABS CAPE  KSCREEN b1 Mental functions 0 12 11 1 5 0 4 0 0 7 0 6 b2 Sensory functions/pain 0 1 5 0 1 0 1 0 0 0 0 0 b3 Voice/speech 0 0 2 0 0 0 0 0 0 0 0 0 b4 Cardiorespiratory, haemato/immunological  0 0 0 0 0 1 1 0 0 0 0 1 b5 Digestive,metabolic/endocrine  0 0 1 0 0 0 0 0 0 0 0 0 b6 Genitourinary reproductive 0 0 1 0 0 0 0 0 0 0 0 0 b7 Neuromusculoskeletal  3 0 1 4 0 1 0 1 0 0 0 0 b8 Skin and related structures 0 0 0 0 0 0 0 0 0 0 0 0 Activities and Participation GMFM PEDI CHQ QUEST PODCI FAQ PEDSQL PRS COPM VABS CAPE  KSCREEN d1 Learning apply knowledge 0 3 1 0 0 0 1 0 0 5 2 0 d2 General tasks demands 0 3 4 0 0 0 0 0 0 2 0 0 d3 Communication 0 4 2 0 0 0 0 0 0 7 0 0 d4 Mobility 22 24 7 2 21 15 3 0 5 9 3 0 d5 Self-care 0 16 4 0 3 0 1 0 5 9 0 0 d6 Domestic life 0 2 1 0 1 0 1 0 4 1 5 0 d7 Interpersonal relationships 0 1 3 0 1 0 1 0 0 5 0 3 d8 Major life areas 0 4 2 0 1 0 1 0 9 4 4 0 d9 Community, social  civic life 0 1 3 0 4 0 1 0 7 2 9 0 Environmental Factors GMFM PEDI CHQ QUEST PODCI FAQ PEDSQL PRS COPM VABS CAPE  KSCREEN e1 Products and technology 0 1 0 0 1 0 0 0 0 0 0 1 e2 Environment  0 0 0 0 1 0 0 0 0 0 0 0 e3 Support and relationships 0 1 2 0 2 0 1 0 0 0 0 0 e4 Attitudes 0 0 1 0 1 0 1 0 0 0 0 1 e5 Services, systems/policies 0 0 1 0 0 0 1 0 0 1 0 0 68   4.1.3 Most Frequently Covered Areas of Functioning: ICF-CY Categories  Overall 238 measures (78 multiple-item and 160 single-item measures) were identified which contained 2193 concepts. These measures covered 161 independent ICF-CY categories. Out of the 161 categories, 53 (33.5%) were related to body functions, 75 (46%) were related to activities and participation, 26 (16.1%) were related to environmental factors, and 7 (4.3%) were related to body structures.  Table 4.5 shows the most relevant areas of functioning included in studies with children with CP. ICF-CY categories related to different aspects of mobility (included in chapter d4, activities and participation) were the most frequent areas of functioning addressed in the literature.  Follow by neuromuscular related areas (included in chapter b7, body functions). Contextual factors representing children’s personal characteristics (personal factors), support and relationships (chapter e3) and aspects of health services (chapter e5) were also frequently measured.             69  Table 4-5  Study I – Relevant Areas of Functioning Represented in the Papers  Table 4-5     Study I - Relevant Areas of Functioning Represented in the Papers                          (Continued)   ICF-CY Categories  % of papers applying the categories n=231a BODY FUNCTIONS  b760 Control of voluntary movement functions 64.1 b7101 Mobility of several joints 39.8 b735 Muscle tone functions 39.8 b7611 Specific spontaneous movements 39.8 b152 Emotional functions 29.4 b1521 Regulation of emotion 27.3 b770 Gait pattern functions 24.2 b710 Mobility of joint functions 23.8 b280 Sensation of pain 22.9 b1300 Energy level 20.3 ACTIVITIES AND PARTICIPATION  d450 Walking 79.7 d4551 Climbing 77.5 d4552 Running 67.1 d4104 Standing 65.4 d4103 Sitting 64.1 d4500 Walking short distances 62.3 d4153 Maintaining a sitting position 61.0 d4550 Crawling 60.2 d4452 Reaching 58.0 d410 Changing basic body position 56.3 d4155 Maintaining head position 55.0 d4105 Bending 53.2 d820 School education 47.2 d4154 Maintaining a standing position 45.5 d4106 Shifting the body’s centre of gravity 44.2 d415 Maintaining a body position 44.2 d4351 Kicking 44.2 d4553 Jumping 44.2 d4100 Lying down 41.1 d4101 Squatting 39.8 d4102 Kneeling 39.8 d4107 Rolling over 39.8 d4152 Maintaining a kneeling position 39.8  70   Table 4-5     Study I - Relevant Areas of Functioning Represented in the Papers                          (Continued)   ICF-CY Categories  % of papers applying the categories n=231a d550 Eating 39.8 d640 Doing housework 39.8 d420 Transferring oneself 36.8 d530 Toileting 33.8 d710 Basic interpersonal interactions 33.3 d4300 Lifting 32.9 d4402 Manipulating 32.5 d465 Moving around using equipment 27.7 d920 Recreation and leisure 27.7 d9201 Sports 26.0 d4401 Grasping 25.5 d4602 Moving around outside the home/other buildings 25.5 d5101 Washing whole body 25.1 d880 Engagement in play 24.7 d455 Moving around 24.2 d5400 Putting on clothes 24.2 d6** Domestic life 24.2 d460 Moving around in different locations 23.8 d3** Communication 23.4 d330 Speaking 23.4 d9205 Socializing 23.4 d440 Fine hand use 22.1 d860 Basic economic transactions 22.1 d445 Hand and arm use 21.6 d5100 Washing body parts 21.2 d560 Drinking 21.2 d571 Looking after one’s safety 21.2 d4** Mobility 20.8 d4200 Transferring oneself while sitting 20.8 d4600 Moving around within the home 20.8 d5202 Caring for hair 20.8 d8803 Shared cooperative play 20.8 d4301 Carrying in the hands 20.3 ENVIRONMENTAL FACTORS  e3** Support and relationships 23.8 e5800 Health services 20.3  71   Table 4-5     Study I - Relevant Areas of Functioning Represented in the Papers                          (Continued)   ICF-CY Categories  % of papers applying the categories n=231a PERSONAL FACTORS  pf Personal Factors 28.1  aonly categories represented in >20% of the studies are shown in the table **information that was too general, was assigned a chapter level ICF-CY, International Classification of Functioning, Disability and Health for children and youth.   4.1.4 Discussion (Study I Systematic review) 4.1.4.1 Content comparison of outcome measures used in cerebral palsy The findings of this systematic review of the literature show that current measures used as outcome measures in the field of CP primarily focus on assessing the body functions and activities and participation components of the ICF-CY. The environmental factors component is less frequently considered. The body structures and personal factors components are rarely measured. These findings suggest a lack of good representation of the important interactions of the environment (physical, social, attitudinal) surrounding the child as well as the child’s personal characteristics (motivation, perseverance, personality) with the child’s functional status, as these contextual factors are not often assessed in many of the measures used.  These results show that some multiple-item measures have been broadly applied in studies with children with CP, such as the GMFM, PEDI, and the CHQ. Interestingly, when the content of these outcome measures were compared, they overlapped in some ICF-CY components, mainly body functions and activities and participation, but none fully represented all the ICF-CY components.  The GMFM was the most widely used outcome measure, reflecting the interest in studying motor function in children and youth with CP. The GMFM is the gold  72  standard tool for assessing gross motor function in children with CP (Russell et al., 2002) and as such, the linking of the GMFM mapped onto the components of body functions and activities and participation.  CP is a heterogeneous condition with varying clinical presentations and potential impairments (Rosenbaum et al., 2007). This diversity is likely reflective of the array of measures used in studies among children with CP. The ICF-CY categories identified by this review represent the scope of “what” areas of functioning have been the focus of study in children with CP. The findings provide a detailed ICF-CY content analysis allowing clinicians and researchers to match the outcome measures to their intended purpose.   Consistent with the literature, the list of outcome measures identified by this review covered most of the measures described in the work of Vargus-Adams et al. (Vargus-Adams & Martin, 2009). These authors identified health professionals’ choices of outcome measures for evaluating response to an intervention in children with CP. As described by the authors, health professionals highly recommended the GMFM as the first choice and also identified an extensive list of other measures.  The current study not only identifies the choices of measures in CP but also provides novel information on how to characterize each measure based on the ICF-CY language.     For single-item measures, there was a predominant selection of mobility of joints, spasticity and gait pattern as the main focus of study.  The majority of these single-item measures covered the component body functions. Overall, our results showed that a comprehensive approach in terms of the ICF-CY has not always been considered by researchers who designed studies with children with CP.   73  4.1.5 Applying the Results of this Systematic Review  The selection of an appropriate outcome measure depends on many factors including the research question, the type of intervention, the psychometric properties and the availability of a condition-specific and/or age-specific version. Previous reviews have compared the characteristics of outcome measures used in CP, providing useful information on their psychometrics properties and theoretical backgrounds (Carlon et al., 2010; Harvey, Robin, Morris, Graham, & Baker, 2008; Ketelaar, Vermeer, & Helders, 1998; Waters et al., 2009). Nowadays, clinicians and researchers need also to consider what areas of functioning, health and disability they are seeking to study, as well as paying attention to the specific goals of the child and the child’s family. The results of this review may guide professionals to identify the outcomes that match their study purpose aligned with the ICF-CY. For example, if clinicians or researchers seek to study the component activities and participation, specifically aspects of “mobility” (chapter d4), they might choose between the GMFM, the PEDI or the PODCI. (Table 4.4) From the review of the literature, it appears that no measure alone fully represents the breath cover by the ICF-CY components; therefore a combination of measures seems most appropriate to capture all components of the ICF-CY.  Based on the content analysis of the measures, it appears that multiple measures combined together can possibly cover all components of the ICF-CY, including the GMFM and/or the PEDI, combined with the PODCI and the CPQOL. The GMFM and PEDI would cover the components body functions and activities and participation but each represents different chapters within those components. The PODCI and the CPQOL complement the previous two measures and cover the contextual factors (environmental and personal factors). These measures have good psychometric properties for 74  measuring the health of children with CP (Davis et al., 2006; Russell et al., 2002). Moreover, the GMFM (Russell et al., 2002), and the CPQOL (Waters et al., 2005) are CP condition-specific measures which focus on domains of interests or importance affected by CP. However, used independently they would only provide partial information on the functional profile of children with CP. Finally, clinicians and researchers need also to consider measures that respond to the engagement of families and children with CP in goal settings, for example by adding the Canadian Occupational Performance Measure (COPM) (Law et al., 1998) and/or GAS. Previous studies have shown the benefits of application of these measures in CP (Livingston et al., 2011; Ostensjo, Oien, & Fallang, 2008). The systematic review described the areas of functioning that have been of particular interest for the research community. Many of the measures included in the component activities and participation and addressed mobility (d4), self-care (d5), and community life (d9). As expected, body functions related to neuromuscular related areas were also studied.   Furthermore, the systematic review highlighted the need for comprehensive ICF-CY based outcome measures for children with CP, encouraging a more universal approach that goes beyond impairments in body structures and body functions. Few ICF-based measures have been developed at this point in time, including the areas of activity limitation and participation restriction questionnaire (IMPACT-S) (Post et al., 2008), the parent-report measure of the participation and environment of children and youth (PEM-CY) (Coster et al., 2011), a clinical measure of functioning in ankylosing spondylitis (Kiltz et al., 2011) and the WHO Disability Assessment Schedule (WHODAS 2.0) (Garin et al., 2010). Interestingly, the PEM-CY (Coster et al., 2011) examines characteristics of participation in typical activities at home, school or community and perceived supports and barriers to participation in those settings, providing an 75  excellent example on how to incorporate the environmental factors component in an outcome measure.  Finally, the systematic review found that some ICF-CY categories were not specific enough to fully represent the unique content of some items. For example items addressing different “degrees of lifting” were linked to a more generic category d4300-Lifting showing that the ICF-CY lacks the specificity described by those items. In addition, items addressing emotional functions (sadness, happiness, anger) were also linked to a broad category b152-Emotional functions failing to keep the detailed information provided by the items.  This linking exercise could provide new information to improve the representativeness of the ICF-CY.   4.2 Study II. Expert Survey Study Study II aimed to identify areas of functioning important from an expert perspective. An open-ended survey was administered to international experts who participate in the assessment, management and follow-up of children and youth with CP in the health, education and social service sectors. This section reports on the findings of the international expert survey. 4.2.1 Descriptive Information of the Experts Of the 247 experts who received the survey, 193 experts completed it (response rate=78%). The majority of the experts (75%) were from the Americas, Europe and the Western Pacific regions. The sample included a diverse group of professionals with therapists and physicians representing 86% of the sample. Years of experience ranged from 5 to 44 years, with a median of 20. (Table 4.6)    76  Table 4-6  Study II – Experts’ Characteristics, N=193  Table 4-6 Study II – Experts’ Characteristics, N=193                                  (Continued)  Gender (female) % 70% Experience median in years (IQR†) 20 (15) Experience (range in years) 05-44 Professional Background Subspecialty   Therapists, n (%) 96 (49.7%) Physiotherapist 59 Occupational therapist 24 Speech and language pathologist 12 Other 1 Physicians, n (%) 70 (36.3%) Pediatric rehabilitation physician 27 Pediatric neurologist 19 Developmental pediatrician 14 Pediatrician/Neonatologist 6 Orthopedic surgeon 4 Education n (%) 19 (9.8%) Special education teacher 9 Conductive educators 6 Other education field§ 4 Rehabilitation nurse or  Social worker 4 Other 4 Total 193 Working field    Clinic 129 Research 92 Management 51 Education 94 Other 20 Affiliation*   University 109 Hospital 97 Community centre 26 Office 7 Government 25 School  29 Other 32  77   Table 4-6 Study II – Experts’ Characteristics, N=193                                  (Continued)  Role of respondents' practice n (%)  National 48 (24.9) Provincial 54 (28.0) Regional 43 (22.3) Community 33 (17.1) None of the above 15 (7.8) Respondent member of:*   Research Institute 71 Professional association 166 None of the above 14 *participants answered more than one option, total may not add up to 193; † Interquartile range; §Health teacher educators; Early intervention teachers, researcher. (Schiariti et al., 2014b)  4.2.2 Overview of Experts’ Answers and ICF-CY Categories In total, the answers of the survey were linked to 9,706 ICF-CY categories. The body structures (n=1,800 categories, 18.5%) and body functions (n=1,761 categories, 18.1%) concepts generated the most codes whereas the questions that assessed strengths on activities and participation (n=917 categories, 9.4%) generated the least codes. The personal factors questions appeared difficult to answer as many of the answers provided were related to environmental factors or body functions and not personal factors. About 65% (n=6,293) of the answers were assigned second level categories, 21% (n=2,038) were assigned third and fourth level categories, 12% (n=1,185) could only be assigned chapter level categories, and less than 2% were coded as “nc” or “nd”.  The 9,706 ICF-CY categories correspond to 182 different second level categories: 13.2% body structures, 26.4% body functions, 37.4% activities and participation and 23.0% environmental factors. Table 4.7 summarizes the second level categories by age groups that were mentioned by at least 15 % of the experts. 78  Table 4-7 Study II – Relevant Areas of Functioning Covered by the Experts  Table 4-7  Study II- Relevant Areas of Functioning Covered by the Experts                (Continued)   < 6 years of age  % of experts **   ≥ 6 years of age  % of experts ** BODY STRUCTURES s750 Structure of lower extremity 65.8 s750 Structure of lower extremity 68.9 s110 Structure of brain 58.5 s730 Structure of upper extremity 62.2 s730 Structure of upper extremity 53.9 s110 Structure of brain 46.6 s760 Structure of trunk 37.8 s120 Spinal cord and related structures 37.8 s770 Additional musculoskeletal structures related to movement 36.8 s770 Additional musculoskeletal structures related to movement 32.6 s220 Structure of eyeball 23.3 s760 Structure of trunk 24.4 s1* Structures of the nervous system 18.1    BODY FUNCTIONS b7* Neuromusculoskeletal and movement-related functions 65.8 b7* Neuromusculoskeletal and movement-related functions 63.7 b117 Intellectual functions 35.8 b117 Intellectual functions 37.3 b167 Mental functions of language 32.1 b167 Mental functions of language 35.8 b515 Digestive functions 25.9 b760 Control of voluntary movement 23.3 b760 Control of voluntary movement 25.4 b280 Sensation of pain 20.2 b320 Articulation functions 17.6 b310 Voice functions 20.2 b210 Seeing functions 16.6 b164 Higher-level cognitive functions 17.1 b755 Involuntary movement reaction 16.6 b770 Gait pattern functions 16.1 b510 Ingestion functions 16.1    b735 Muscle tone functions 16.1    ACTIVITIES AND PARTICIPATION d920 Recreation and leisure 26.4 d920 Recreation and leisure 22.8 d3* Communication 20.7 d3* Communication 17.6 d550 Eating 15.0 d820 School education 16.6 d450 Walking 37.3 d920 Recreation and leisure 43.0 d920 Recreation and leisure 37.3 d820 School education 36.3 d3* Communication 31.1 d5* Self-care 35.8 d4* Mobility 29.5 d3* Communication 32.1 d5* Self-care 29.0 d450 Walking 30.6 d550 Eating 24.4 d4* Mobility 27.5  79   Table 4-7  Study II- Relevant Areas of Functioning Covered by the Experts                (Continued)   < 6 years of age  % of experts **   ≥ 6 years of age  % of experts ** d440 Fine hand use 20.7 d440 Fine hand use 15.0 d330 Speaking 16.1    d455 Moving around 16.1    ENVIRONMENTAL FACTORS e310 Immediate family 69.9 e310 Immediate family 58.5 e355 Health professionals 45.6 e355 Health professionals 39.9 e580 Health services, systems and policies 38.3 e585 Education and training services, systems and policies 30.6 e585 Education and training services, systems and policies 19.7 e580 Health services, systems and policies 25.9    e115 Products and technology for personal use in daily living 20.2 e580 Health services, systems and policies 32.6 e460 Societal attitudes 38.3 e150 Design, construction and building products and technology of buildings for public use 26.9 e150 Design, construction and building products and technology of buildings for public use 32.6 e310 Immediate family 24.9 e355 Health professionals 30.6 e355 Health professionals 22.8 e585 Education and training services, systems and policies 25.4 e460 Societal attitudes 20.7 e570 Social security services, systems/policies 22.3 e570 Social security services, systems/ policies 18.1 e580 Health services, systems and policies 21.8 e165 Assets 17.6 e310 Immediate family 16.6 e585 Education and training services, systems and policies 15.0 e165 Assets 16.1 PERSONAL FACTORS na§ General patterns of experience and behavior 38.6 na General patterns of experience and behavior 36.5 na Biographical, socio-demographical and economical factors 19.8 na Biographical, socio-demographical and economical factors 25.9 **Frequencies of International Classification of Functioning, Disability and Health for children and youth (ICF-CY) categories mentioned by ≥ 15% of the experts; *answers were too general, only chapter level categories were assigned; § Personal factors do not have assigned categories in the ICF-CY.  80  The answers provided by the experts, covered almost all categories with the following exceptions: b8-Functions of the skin and related structures which is part of the body functions component; d6-Domestic life which is part of the activities and participation component; and e2-Natural environment and human made changes to environment which is part of the supportive aspect of the environmental factors component. As shown in table 4.7, there was a high consensus among the experts on the most relevant areas of body structures, body functions and contextual factors reflected by some categories mentioned by more than 60 % of the experts. The greatest diversity among the answers was seen in the component activities and participation.  Table 4.8 compares the patterns of answers at the chapter levels by professional background and by children age groups using logistic regressions, chapter level codes were used as the dependent variables with age (<6 years of age versus  ≥6 years of age) and profession (physician versus therapist) as independent variables. Overall, physicians were significantly more likely to cover the structures of the eye and ear, structures of the digestive system, self-care, and communication than therapists.  In contrast, physicians were significantly less likely to describe structures related to movement and support and relationships.  In the less than 6 years age-group, answers were significantly more likely to focus on functions of the digestive system than in the higher age-group. In addition, answers related to strengths and limitations on the component of activities and participation were significantly more likely to cover areas of self-care and mobility, for the younger age group in comparison to the older age group.  81   Table 4-8  Study II – Professional and Age-Group Comparisons at the ICF-CY Chapter level  Table 4-8  Study II- Professional and Age-Group Comparisons at the ICF-CY Chapter level                 (Continued)                          ICF-CY Chapters  Professional Background (Physician versus Therapist) Age group ( <6 years versus ≥ 6 years of age)   OR [95% CI]; p-value OR [95% CI];  p-value    BODY STRUCTURES    s1 Structures of the nervous system 1.25 [0.98; 1.59]; p=0.07 0.91 [0.72; 1.16]; p=0.46 s2 The eye, ear and related structures 2.35 [1.52; 3.64]; p=<0.001* 1.42 [0.93; 2.19]; p=0.10 s3 Structures involved in voice and speech 0.77 [0.46; 1.28]; p=0.31 1.51 [0.92; 2.48]; p=0.10 s4 Structures of the cardiovascular, immunological and resp systems 4.34 [1.94; 9.74]; p=<0.001* 0.84 [0.47; 1.50]; p=0.55 s5 Structures related to the digestive, metabolic and endocrine system 2.07 [1.02; 4.23]; p=0.04* 1.29 [0.64; 2.62]; p=0.47 s6 Structures related to the genitourinary and reproductive systems 4.21 [0.44; 40.54]; p=0.21 0.33 [0.03; 3.20]; p=0.34 s7 Structures related to movement 0.79 [0.64; 0.97]; p=0.02* 0.93 [0.75; 1.14]; p=0.46             82  Table 4-8  Study II- Professional and Age-Group Comparisons at the ICF-CY Chapter level                 (Continued)                          ICF-CY Chapters  Professional Background (Physician versus Therapist) Age group ( <6 years versus ≥ 6 years of age)   OR [95% CI]; p-value OR [95% CI];  p-value   BODY FUNCTIONS  b1 Mental functions 1.03 [0.82; 1.29]; p=0.82 0.80 [0.64; 1.00]; p=0.05 b2 Sensory functions and pain 1.02 [0.72; 1.43]; p=0.92 0.98 [0.70; 1.36]; p=0.88 b3 Voice and speech functions 1.04 [0.65; 1.68]; p=0.85 0.96 [0.60; 1.54]; p=0.87 b4 Functions of the cardiovascular,immunological and resp systems 0.52 [0.25; 1.07]; p=0.07 0.75 [0.39; 1.45]; p=0.39 b5 Functions of the digestive, metabolic and endocrine systems 1.07 [0.74; 1.54]; p=0.71 2.16 [1.47; 3.17]; p=<0.001* b6 Genitourinary and reproductive functions 1.41 [0.35; 5.68]; p=0.62 0.33 [0.07; 1.63]; p=0.17 b7 Neuromusculoskeletal and movement-related functions 0.96 [0.78; 1.18]; p=0.71 1.12 [0.91; 1.37]; p=0.29               83  Table 4-8  Study II- Professional and Age-Group Comparisons at the ICF-CY Chapter level                 (Continued)                          ICF-CY Chapters  Professional Background (Physician versus Therapist) Age group ( <6 years versus ≥ 6 years of age)   OR [95% CI]; p-value OR [95% CI];  p-value   ACTIVITIES AND PARTICIPATION   STRENGTHS  d1 Learning and applying knowledge 0.59 [0.38; 0.92]; p=0.02* 1.37 [0.65; 2.91]; p=0.41 d2 General tasks and demands 0.75 [0.19; 3.02]; p=0.68 0.44 [0.04; 4.96]; p=0.50 d3 Communication 1.58 [1.05; 2.36]; p=0.02* 0.76 [0.39; 1.48]; p=0.42 d4 Mobility 0.88 [0.62; 1.24]; p=0.45 1.24 [0.69; 2.24]; p=0.46 d5 Self-care 1.86 [1.23; 2.8]; p=<0.001* 1.75 [1.15; 2.65]; p=<0.001* d6 Domestic life 6.08 [0.68; 54.64]; p=0.10 NA d7 Interpersonal interactions and relationships  0.51 [0.32; 0.81]; p=<0.001* 1.39 [0.63; 3.07]; p=0.41 d8 Major life areas 1.62 [0.88; 2.96]; p=0.11 0.35 [0.18; 0.69]; p=<0.001* d9 Community, social and civic life 0.75 [0.48; 1.16]; p=0.19 0.68 [0.35; 1.31]; p=0.24          84  Table 4-8  Study II- Professional and Age-Group Comparisons at the ICF-CY Chapter level                 (Continued)                          ICF-CY Chapters  Professional Background (Physician versus Therapist) Age group ( <6 years versus ≥ 6 years of age)   OR [95% CI]; p-value OR [95% CI];  p-value    ACTIVITIES AND PARTICIPATION LIMITATIONS  d1 Learning and applying knowledge 1.11 [0.70; 1.74]; p=0.66 0.86 [0.55; 1.35]; p=0.51 d2 General tasks and demands 1.74 [0.53; 5.74]; p=0.36 0.59 [0.17; 2.02]; p=0.39 d3 Communication 1.54 [1.09; 2.19]; p=0.01* 1.32 [0.93; 1.87]; p=0.12 d4 Mobility 0.86 [0.68; 1.10]; p=0.24 1.47 [1.15; 1.87]; p=<0.001* d5 Self-care 1.32 [0.99; 1.76]; p=0.06 1.36 [1.02; 1.81]; p=0.03* d6 Domestic life 0.36 [0.08; 1.70]; p=0.19 0.11 [0.01; 0.90]; p=0.03* d7 Interpersonal interactions and relationships 0.61 [0.33; 1.12]; p=0.11 0.80 [0.45; 1.42]; p=0.45 d8 Major life areas 0.99 [0.66; 1.50]; p=0.97 0.37 [0.24; 0.58]; p=<0.001* d9 Community, social and civic life 0.76 [0.54; 1.07]; p=0.11 0.73 [0.53; 1.02]; p=0.06         85  Table 4-8  Study II- Professional and Age-Group Comparisons at the ICF-CY Chapter level                 (Continued)                          ICF-CY Chapters  Professional Background (Physician versus Therapist) Age group ( <6 years versus ≥ 6 years of age)   OR [95% CI]; p-value OR [95% CI];  p-value   ENVIRONMENTAL FACTORS FACILITATORS e1 Products and technology 0.83 [0.6; 1.15]; p=0.25 0.87 [0.64; 1.20]; p=0.39 e3 Support and relationships 0.68 [0.53; 0.86]; p=<0.001* 1.15 [0.91; 1.47]; p=0.25 e4 Attitudes 1.32 [0.75; 2.33]; p=0.33 1.10 [0.63; 1.95]; p=0.73 e5 Services, systems and policies 1.71 [1.31; 2.24]; p=<0.001* 0.86 [0.66; 1.12]; p=0.26    ENVIRONMENTAL FACTORS BARRIERS   e1 Products and technology 1.00 [0.75; 1.33]; p=0.98 1.09 [0.83; 1.44]; p=0.54 e2 Natural environment and human-made changes to environment 0.39 [0.11; 1.40]; p=0.14 0.96 [0.34; 2.65]; p=0.93 e3 Support and relationships 1.05 [0.78; 1.42]; p=0.75 1.01 [0.75; 1.36]; p=0.94 e4 Attitudes 1.13 [0.83; 1.54]; p=0.44 1.03 [0.76; 1.39]; p=0.87 e5 Services, systems and policies 0.89 [0.68; 1.15]; p=0.36 0.94 [0.73; 1.20]; p=0.61 *p-value<0.05; NA=not applicable, not tested due to low numbers of categories. Chapters s8-skin and related structures, b8-functions of the skin and related structures, e2-natural environment and human-made changes to environment (supportive factors) were not tested due to low numbers of categories, ICF-CY: International Classification of Functioning, Disability and Health for children and youth. 86  4.2.3 Discussion (Study II Expert Survey Study)  This is the first international expert survey that explores the functional profile of children and youth with CP using the methodology endorsed by the WHO for ICF Core Sets development. The ICF-CY was used as reference as it provides a framework, a universal language as well as a comprehensive catalogue to describe all aspects of functioning as defined by WHO.  A novel aspect of this study is the inclusion of the international community from the six WHO regions who deals with children with CP in the clinical, research, health, education, and social sciences settings.  The experts described a wide spectrum of functioning and health that represent the complexity of CP.  4.2.4 Profile of Functioning by Experts’ Perspective As described by the experts, CP affects nearly all aspects of functioning and contextual factors as there were a limited number of chapter level categories (3 out 30) that were not mentioned in their answers  The large set of ICF-CY categories identified in this study shows the high level of burden children and youth with CP deal with, including not only the core areas affected in CP (gross and fine motor functioning) but its associated features (cognition, communication, behaviour, sensation) and its impact on activity limitations and social participation (Majnemer et al., 2010; Mesterman et al., 2010; Rosenbaum et al., 2007).  As expected, the vast majority of ICF-CY categories in body structures and body functions represented structures and functions of movement and the nervous system. This reflects the key characteristics of CP (abnormal motor function and motor control) (Rosenbaum et al., 2007). Furthermore, the experts acknowledged the importance of participation in leisure and recreation activities by children with CP. This was reflected in numerous linkings to the codes specified in the ICF-CY category recreation and leisure. This is in keeping with the literature; 87  children with CP have been reported to have fewer social experiences with friends than children without disabilities (Kang et al., 2010). Participation of children with CP in recreation and leisure activities have been the focus of several research studies that aimed to enhance social participation in this population (Claassen et al., 2011; Imms, Reilly, Carlin, & Dodd, 2009; Kang et al., 2010; Molin & Alricsson, 2009; Palisano et al., 2011).   While experts described a comprehensive profile of functioning in this population, by applying the ICF model new insights are gained to explain the interaction between the child and their environment. The experts highlighted the role of immediate family members and health professionals as main environmental supportive factors influencing functioning. Positive associations have been described between parents’ health and the physical function of their children with CP. For example, Murphy et al. has shown that the better the health of the parents the higher the functional abilities of their children (Murphy et al., 2011), illustrating the relationship between the child’s immediate environment (family) and his functional capacity. Moreover, aspects of the child’s environment experiences were frequently mentioned as environmental barriers, mainly related to accessibility of public buildings, availability of heath professionals and educational training programs.  Experts with different professional backgrounds highlighted different areas of functioning, physicians focused on areas of body structures and some areas of activities and participation, therapists mainly focused on areas of activities and participation. This emphasizes the need of a interdisciplinary approach when selecting candidates ICF Core Sets categories. Importantly, different professional perspectives will contribute to the development of more comprehensive ICF Core Sets which ultimately will guide the systematic assessment of children with CP.  88  This study may also suggest the need to create age-specific ICF Core Sets for children and youth with CP, with tailored sets of categories for the components body functions and activities and participation. For example, categories covering functions of the digestive system were more prevalent in the younger group. This may reflect the prevalence of feeding difficulties and oral motor dysfunction in young children with CP (Reilly & Skuse, 1992; Reilly, Skuse, & Poblete, 1996; Santoro et al., 2012). By describing age-specific functional profiles, experts acknowledged the developmental consequences of the functional limitations associated with CP which are important to consider for maximizing their functional potential (Claassen et al., 2011; Kerr, McDowell, Parkes, Stevenson, & Cosgrove, 2011). As described in the literature, only one study to date assessed domains of importance in therapeutic intervention for CP using ICF-CY categories (Vargus-Adams & Martin, 2011). The authors conducted a survey of youths, parents and medical professionals (n=75). Out of 322 responses, the most prevalent categories were related to mobility (45%) and movement related functions (45%). In line with our findings, their results demonstrate the multiple concerns regarding the spectrum of functioning and health in children with CP.   In summary, this international group of experts suggested a comprehensive profile of functioning in this population, in particular in the areas of personal capacity and social participation, as well as a detailed description of relevant contextual factors.       89  4.3 Study III. Qualitative Study Study III represented the children and youth with CP and caregivers’ perspectives on relevant areas of functioning. Semi-structured interviews with children with CP and caregivers were conducted to identify important areas of functioning using the ICF-CY language.  This section includes the results of the qualitative study. 4.3.1 Participants’ Characteristics As shown in Table 4.9, 10 children and 22 caregivers were interviewed (10 child-caregiver dyads). The mean age of child participants was 12.4 years (SD=2.06, range 10 to16 years). For caregiver interviews not including those in dyads, the mean age of their child was 8.9 years (SD=3.9, range 4 to 15years). Children were GMFCS levels I-V.                90  Table 4-9  Study III – Characteristics of Children and Caregivers Participating in the Interviews  Child Characteristics, N=10  Age, child participants, mean (standard deviation) in years 12.4(2.1) Gender, children interviewed and children of caregivers (proxy), male N(%)* 16(72.7) Comorbidities, N (%)*  Intellectual disabilities 6(27.3) Learning disabilities 7(31.8) Vision difficulties 11(50.0) Others§ 9(40.9) Surgery, 12 months prior to the interview 12(54.5) Number of participants by GMFCS level, N(%)*   GMFCS I-II 5(22..7) GMFCS III 5(22.7) GMFCS IV 6(27.3) GMFCS V 6(27.3) Grade children attending, N(%)*  Preschool/Kindergarten 2(9.0) School Grade 1-10 20(91.0) Caregiver characteristics, N=22  Mother, N(%) 19(86.4) Others, N(%) 3(13.6) Age, children of caregivers interviewed, mean  (standard deviation) in  years 8.9(3.9) Number of dyads 10 Caregivers level of education, N (%)   Non-University or Secondary 84(36.2) Post-Secondary  8(36.4) University 6(27.3) GMFCS; Gross Motor Function Classification System., *Information on child-caregivers dyads was counted once,  § Hearing difficulties, or behavioural difficulties or epilepsy.   Note: In order to protect the confidentiality of the participants, some categories were grouped to prevent reporting counts equal to 1.   4.3.2 Relevant Areas of Functioning, ICF-CY Categories This systematic review identified 1956 themes that were linked to 175 unique ICF-CY categories, 107 (61%) categories were second level, 64 (37%) were third level and only 4 (2%) were fourth level categories.  Some themes (4%) were coded as “nc” or “nd” (e.g., nc: impact of 91  CP on parents’ health).  Out of 175 unique categories, 41% were activities and participation, 32% environmental factors, 17% body functions and 10% body structures. Although children and caregivers mainly represented the components of activities and participation and environmental factors, the pattern of answers differed among them. Children mainly described areas related to recreation and leisure, mobility, self-care and support and relationships. Although children and caregivers agreed on many areas of functioning, they provided unique perspectives as well, both in general and in specific child-caregiver dyads. Children talked more about activities they were able to do and what helped them perform these activities. In contrast, caregivers discussed more concerns about physical limitations and environmental factors including barrier and facilitators of everyday activities. Table 4.10 shows coverage of ICF-CY chapters described by children and caregivers; the representation of ICF-CY chapters differed between children and caregivers. The most common aspects of functioning addressed by the participants were d4-Mobility, d5-Self-care, d9-Community, social and civic life, e1-Products and technology and e5-Services, systems and policies. Within each chapter, children and caregivers agreed on many ICF-CY categories; however, each group provided unique categories as well.          92  Table 4-10  Study III – Distribution of ICF-CY Chapters by Children and Caregivers   ICF-CY CHAPTERS  Number of unique concepts by participant interviewed   Children N=10 Caregivers Dyads N=10 Caregivers not Dyads N=12 BODY STRUCTURES    s1-Structures of the nervous system 0 0 3 s2-The eye/ear related structures 1 2 1 s4-Structures of the cardiovascular, immunological/respiratory systems 0 0 1 s5-Structures related to digestive, metabolic and endocrine systems 0 0 1 s7-Structures related to movement 23 25 41 BODY FUNCTIONS    b1-Mental functions 2 6 4 b2-Sensory functions and pain 8 4 12 b3-Voice and speech functions 0 2 1 b4-Functions of the cardiovascular, haemat/immunological/respiratory  0 0 3 b5-Functions of the digestive, metabolic and endocrine systems 0 7 18 b6-Genitourinary and reproductive  0 0 1 b7-Neuromusculoskeletal functions 8 13 19 ACTIVITIES AND PARTICIPATION    d1-Learning/applying knowledge 14 6 6 d2-General tasks and demands 0 3 2 d3-Communication 5 2 18 d4-Mobility 57 78 91 d5-Self-care 41 47 65 d6-Domestic life 6 7 0 d7-Interpersonal relationships 2 8 8 d8-Major life areas 10 18 12 d9-Community, social and civic life 53 38 40 ENVIRONMENTAL FACTORS    e1-Products and technology 46 107 176 e2-Natural environment  1 4 2 e3-Support and relationships 22 23 35 e4-Attitudes 12 23 29 e5-Services, systems and policies 34 70 108 ICF-CY: International Classification of Functioning, Disability and Health children and youth version. 93  As shown in table 4.11, representation of chapters also differed among age-groups. In the school-aged and adolescent groups, d3-Communication, d7-Interpersonal relationships, d8-Major life areas, d9- Community, social and civic life, e3-Support and relationships and e4-Attitudes were more prevalent than in the youngest group.  Table 4-11  Study III – Distribution of ICF-CY Chapters by Age-groups Table 4-11 Study III-Distribution of ICF-CY Chapters by Age-groups            (Continued)  ICF-CY CHAPTERS  Number of unique concepts by age-groups  ≤ 6 years N=2 ≥ 6 < 14 years N=21 ≥ 14 - 18 years N=9 BODY STRUCTURES    s1-Structures of the nervous system 0 2 1 s2-The eye/ear related structures 0 3 1 s4-Structures of the cardiovascular, immunological/respiratory systems 0 15 0 s5-Structures related to digestive, metabolic and endocrine systems 0 1 0 s7-Structures related to movement 6 61 22 BODY FUNCTIONS    b1-Mental functions 0 9 3 b2-Sensory functions and pain 3 13 8 b3-Voice and speech functions 0 2 1 b4-Functions of the cardiovascular, haemat/immunological/respiratory  0 3 0 b5-Functions of the digestive, metabolic and endocrine systems 1 18 6 b6-Genitourinary and reproductive  1 0 0 b7-Neuromusculoskeletal functions 5 25 10 ACTIVITIES AND PARTICIPATION    d1-Learning/applying knowledge 0 22 4 d2-General tasks and demands 1 2 2 d3-Communication 2 15 8 d4-Mobility 21 144 61 d5-Self-care 13 103 37 d6-Domestic life 0 4 9 d7-Interpersonal relationships 0 24 8 d8-Major life areas 1 25 14 d9-Community, social and civic life 6 81 44  94  Table 4-11 Study III-Distribution of ICF-CY Chapters by Age-groups            (Continued)  ICF-CY CHAPTERS  Number of unique concepts by age-groups  ≤ 6 years N=2 ≥ 6 < 14 years N=21 ≥ 14 - 18 years N=9 ENVIRONMENTAL FACTORS    e1-Products and technology 23 192 100 e2-Natural environment  0 6 1 e3-Support and relationships 1 37 42 e4-Attitudes 2 46 16 e5-Services, systems and policies 6 134 72 ICF-CY: International Classification of Functioning, Disability and Health children and youth version.  Body structures and Body functions: in the component body structures and body functions, participants including children and caregivers’ proxy reports mainly described neuromusculoskeletal areas as relevant aspects of functioning.  Specifically, the most commonly described impaired body structures were b750-Structure of lower extremity and b7302-Structure of the hand. Interestingly, some youths did not describe body structures as clearly affected by CP, even after probing for that, example provided below:  Boy, 13-16 age range (note: age ranges are reported to protect the confidentiality of participants), GMFCS IV, using a talker  “… Interviewer (I): Can you tell me what parts of your body make it hard for you to do things?  Or what parts of your body give you trouble? Youth:  My right hand.”  His mother clarified: “…For him, his wheelchair is an extension of his body and that; his wheelchair makes it hard for him to do the things he wants because of technology.  Because if it breaks or because the battery dies or that kind of thing. I:  Like you were saying, he sees himself as being no different. Mom:  Yes, he fits right in and that’s why he says, when you ask him for body-wise, the only thing he sees a problem with is his right hand. Not anything else.”  95  In the component body functions, b760-Control of voluntary movements and b735-Muscle tone were the most frequently described areas of concern. Example of a quote describing body functions is provided below: Caregiver, boy, 9-12 age range, GMFCS I  “…Mom: …The riding a bicycle and the swimming would be the two because there’s so much more going on.  There’s your environment, then you’ve got to deal with all different body parts and they all have to work together and tell them and coordinate together.”  Activities and Participation- Able to do: In general, children indicated that they were able to perform many activities such as moving around with or without equipment, feeding, dressing, washing themselves, and participating in many social activities.  Use of social media was frequently described by the children (e.g., facebook, twitter, emails).  A quote addressing activities and participation is shown below:  Boy, 13-16 age range, GMFCS IV   Youth (working on talker) I: (reading from talker): “ Your computer.  So you can use your computer, you can watch TV; you can go outside with friends”   Caregivers concur with the children in many aspects (e.g. mobility, self-care); however, caregivers clarified that many of the skills were not performed at an age-appropriate level and they had to provide some assistance to complete the tasks (e.g., washing). Caregivers also stated that the children may need more time to achieve the activities on their own.   Activities and Participation-Limitations/challenges: certain aspects of d4-mobility (e.g., walking on different surfaces, transferring oneself, running), including fine motor skills, were frequently indicated by all participants as being a challenge. In addition, d5-Self-care (e.g., 96  dressing/doing buttons), d1-learning/applying knowledge (e.g., writing) were commonly described as areas of concern. For example:  Girl, 13-16 age range, GMFCS III  Youth: “… I don’t like cutting things.  It’s just, I don’t have very good cutting skills… Um, but no I don’t cut food but I do, like I did the grocery shopping.  So I did my first solo grocery shop a few weeks ago…” Boy, 13-16 age range, GMFCS III  Youth:  “Yah, like walking on snow or like rocks or… that’s hard but like, walking on grass or pavement, it’s just like the same.”  Environmental factors-Facilitators: many environmental factors were described as positively influencing functioning, such as e1-Products and technology and e5-Services, systems and policies. Children indicated that equipment for mobility, such as crutches, wheelchairs as main facilitators. They also acknowledged the love and support of their immediate family members as well as attitudes of their peers, treating them as equal. Some caregivers described access to services, support at school (e5), and professional attitudes (e4) as facilitators. However not every family had the same positive experience and listed the same factors as barriers. For example; Girl, 13-16 age range, GMFCS III   Youth: “…yah, I’ve grown up with them (crutches), so I’m used to them.  And everyone’s like, ‘well if you want to do this you gotta get rid of your crutches’.  I’m like, ‘I grew up on them, they’re not weird for me’…I’m not that eager to get, well, I am eager to get off them but 97  it’s not weird for me to have them because it… had them for my whole life.  ..So I’m not really eager to get off the things that I’ve relied on for 16, 15 years…” Girl, 13-16 age range, GMFCS III,   Youth: “I hang out more with friends act like I’m not different.  Like, they treat me like I’m the exact same.  They treat me… you know, they just don’t be like, ‘oh she has a disability, we have to walk slow’.  They just do it.”   Caregiver, girl, 4-8 age range, GMFCS II  Mom: “ therapists, and people really take this kids positively.  And that helps them to build their self-confidence… instead of saying ‘oh oh don’t do this, you won’t be able to do this.... oh you are great, you can do this.”   Environmental factors –Barriers: aspects related to access to information (e.g., funding programs, adapted sports), availability of recreational programs (e5), attitudes (e4), access to health services, availability of health professionals, design of public and private buildings (e1) for accessing and/or moving around the buildings were some of the frequently described as hindering factors. For example: Caregiver, boy, 13-16 age range, GMFCS IV  Mom: “… you have to almost talk to another parent with a child with disabilities to find out about more programs.  Rather than having, like a case worker to tell you, “listen, you can get this and that”.   Caregiver, boy, 13-16 age range, GMFCS III, Mom: “I think we’ve found out very little through our therapist.  It’s always kinda just been surfing the internet or, talking to people.  Getting to know people and passing the information along…” Caregiver, boy, 9-12 age range, GMFCS II, 98   Mom:  “You know what’s sometimes frustrating is that there’s all kinds of programs out there…. But the one group is so focused on the vision and the other group is so focused on the physical that, it’s, each of them miss a piece.”   Boy, 13-16 age range, GMFCS III, Youth:  “Oh yah, movie theatres are hard.  Like, like getting upstairs in public cause you have to walk, you can’t really crawl upstairs.  Getting upstairs in public’s kinda difficult.  But there’s not a whole lot of difficult things. Youth:  And bigger doorways (at school)” Caregiver, boy, 13 years, GMFCS III  Mom: “ Um, services… I found it odd that when he turned five, that the funding for like physio was cut off.  … he could really have benefited a lot more to have more services now than he did when he was two and three.”    Personal Factors: themes related to personality and motivation were the most commonly addressed.  Participants were asked how you would describe yourself/your child. These were some examples: Boy, 9-12 age range, GMFCS II  Youth: “…Um, well when I was a baby I had cataracts and CP. Is that ok if I just call it CP? “… I don’t really play at the park because I just want to go home and watch my ipad because I’m more of an inside guy.  Um, but, um… that’s basically it.” Caregivers, boy, 9-12 age range, GMFCS II   “Dad:…sometimes it’s hard to motivate him.  Yah.  It depends what it is, right?  Like, if you have like, you can go play a game over there on the computer, ohh yah, then he’s right there.  But if it’s something else… 99  Caregiver, boy, 13-16 age range, GMFCS III  Mom:“ Very motivated.  Like, the doctors have always said that through the years, half of his battles, he’ll win just for motivation and trying.” Caregiver, boy, 13-16 age range, GMFCS IV  Mom: “First of all, I don’t know how to answer the question because compared to a typical child or compared to? It’s the comparison.  I mean “Johnny*” has cerebral palsy and I accept that ….  But, I, I just see him as ‘this is the package’ and this is what comes with it.  So, he’s got uh, athetoid CP…” (* pseudonym is used to protect the confidentiality of participants).  Family’ related aspects: caregivers stated that there were other factors that ultimately would influence their children’s functioning as follows:  1) Caregivers’ health, some caregivers described that they worried about their own health, as their children depend on them for daily activities, looking after their children impact their physical health; they worried about not being able to continue to assist their children as they grow older.     Caregiver, boy, 13-16 age range, GMFCS IV  Mom: “… As he gets bigger now, I’m starting to think more about my own physical health ….” Caregiver, boy, 13-16 age range, GMFCS IV  Dad: “… So we worried about in the future. Because, “BOY” is getting bigger, he’s getting heavier and we, even me.  My wife, sometimes she makes her back, back injury, right?”   2) Family- social participation, some caregivers described that because of difficulties moving around in relatives’ homes or due to attitudes of extended family members (stress due to child’s 100  condition), they limited their social interactions with their families, even for regular family gathering like Christmas.  Unfortunately, these barriers reduce the opportunities of the child to socialize with his/her own family.  3) Overprotection, some caregivers indicated that in order to keep the children safe they limited some activities; they acknowledged that it is hard to balance between safety and overprotection; their children might be able to do more than what they are allowed to.  Caregiver, girl, 13-16 age range, GMFCS III  “Caregiver:  So, the kitchen makes me very nervous because, how do you hold onto your walker and pour a kettle or cook on the stove?               101  Table 4.12 shows the ICF-CY categories mentioned by at least 9 participants (≥80th percentile, arbitrary cut off) organized by ICF-CY component. Overall, the most common second to fourth level ICF-CY categories described by participants were d510-Washing oneself, d9201-Sports, d440-Fine hand use, d540-Dressing, and s750-Structures of lower extremity.  Table 4-12 Study III – Relevant Areas of Functioning Described by the Children and Caregivers Table 4-12  Study III- Relevant Areas of Functioning Described                              (Continued)                                                                     by the Children and Caregivers                                                 ICF-CY Category  % Percentile Rank *  BODY STRUCTURES  s730 Structure of upper extremity 28.1 80 s7302 Structure of hand 43.8 87 s750 Structure of lower extremity 81.3 99  BODY FUNCTIONS  b210 Seeing functions 31.3 82 b735 Muscle tone functions 34.4 84 b760 Control of voluntary movement functions 53.1 90  ACTIVITIES AND PARTICIPATION  d420 Transferring oneself 62.5 94 d440 Fine hand use 81.3 99 d450 Walking 37.5 86 d4551 Climbing 46.9 89 d465 Moving around using equipment 59.4 93 d510 Washing oneself 84.4 100 d520 Caring for body parts 46.9 89 d540 Dressing 81.3 99 d550 Eating 65.6 95 d560 Drinking 40.6 87 d820 School education 56.3 91  102  Table 4-12  Study III- Relevant Areas of Functioning Described                              (Continued)                                                                     by the Children and Caregivers                                                 ICF-CY Category  % Percentile Rank * d920 Recreation and leisure 56.3 91 d9200 Play 37.5 86 d9201 Sports 84.4 100 d9205 Socializing 31.3 82   ENVIRONMENTAL FACTORS  e115 Products and technology for personal use in daily living 31.3 82 e120 Products and technology for personal indoor and outdoor mobility and transportation 28.1 80 e1200 General products and technology for personal indoor and outdoor mobility and transportation 37.5 86 e1201 Assistive products and technology for personal indoor and outdoor mobility and transportation 46.9 89 e1300 General products and technology for education 34.4 84 e1500 Design, construction and building products and technology for entering and exiting buildings for public use 75 97 e1501 Design, construction and building products and technology for gaining access to facilities inside buildings for public use 75 97 e1550 Design, construction and building products and technology for entering and exiting of buildings for private use 62.5 94 e1551 Design, construction and building products and technology for gaining access to facilities in buildings for private use 62.5 94 e310 Immediate family 59.4 93 e425 Individual attitudes of acquaintances, peers, colleagues, neighbours and community members 34.4 84 e460 Societal attitudes 56.3 91 e570 Social security services, systems and policies 28.1 80 e575 General social support services, systems and policies 53.1 90 e5800 Health services 78.1 98 e5853 Special education and training services 75 97 ICF-CY: International Classification of Functioning, Disability and Health children and youth version. § Number of participants mentioning the ICF-CY category, duplicates were not included in the calculation *Due to large amount of data, percentiles were added to show the rank distribution of percentages. Only categories that were mentioned equal or greater than the 80th percentile of the distribution are shown in the table  103  4.3.3 Discussion (Study III Qualitative study) The qualitative study identified the relevant areas of functioning among children with CP based on the perspective of the children and their caregivers. Prevalent issues raised by participants were related to mobility, self-care, recreation and leisure. The main contextual factors identified in the study were related to products, and technology, services, systems and policies related to health, education and social services. A comprehensive list of categories covering all ICF-CY components was identified and the list can provide professionals working with children with CP key areas to consider when assessing this population. Furthermore, our findings will provide another piece of evidence towards the development of the ICF Core Sets for children with CP.   Children in general had a positive view of their abilities and described their strengths and facilitating factors. In contrast, caregivers focused on the challenges their children encountered in their every day activities and many had an impact on them.  Caregivers also expressed a number of hindering factors that negatively impact their children’s performance every day. The discordance between children and caregivers’ perspectives on aspects of well-being and QOL has been shown in other studies (Dunn, Shields, Taylor, & Dodd, 2009; Shikako-Thomas et al., 2009; White-Koning et al., 2007). The studies have found that caregivers do not necessarily agree with their child’s perceptions on QOL, caregivers rated lower QOL scores than their children.  Saigal et al. (Saigal et al., 2000; Saigal, 2000) have shown that people with significant functional problems do not necessarily report their QOL as being low, showing that the perception of their overall well-being does not directly correlate with their functional challenges.  This study shows that it is important to consider the children as well as the caregivers’ perspectives on relevant areas of functioning in this population. These findings can guide the 104  selection of outcome measures that align with the ICF-CY categories identified in this study, for individual or program evaluation.  In addition, the list of unique ICF-CY categories can guide goal setting and eligibility for health or educational services.  In keeping with the literature, this study also identified the impact of caring for a child with CP on caregiver’s health (Davis et al., 2009; Raina et al., 2005), showing the importance of supporting caregivers to meet their needs and enhance their own well-being. Finally, our results demonstrate the need to include children and caregivers’ perspectives when selecting the final ICF-CY categories for the ICF Core Sets for children with CP. The results of this study show that the clients’ perspectives on relevant areas of functioning differed from professionals’ perspectives (Schiariti et al, 2014b), as the representation of ICF-CY categories and components differed from the ones identified in this study. Children and caregivers highlighted aspects mainly related to the components activities and participation and environmental factors, in contrast professionals mainly focused on activities and participation and body functions, showing the importance of engaging children and caregivers when setting goals and planning interventions. In summary, this qualitative study provides evidence that children with CP and their caregivers provide different perspectives in terms of issues that limit or facilitate their functioning. The children with CP highlighted their abilities and factors that facilitate their participation in daily activities. In contrast, caregivers provided a more comprehensive perspective in terms of the ICF-CY components, including areas of impairments in body structures, body functions, limitations in activity of daily living and the role of the environment showing the need to consider both perspectives when planning functional child-centered interventions and services.  105   4.4 Study IV. Clinical Study Study IV represented the clinical perspectives on relevant areas of functioning in children and youth with CP. A retrospective chart review of data collected in clinical assessments of children and youth with CP was performed. This section reports the findings of the clinical study.  4.4.1 Characteristics of Sample Overall, 143 assessments were conducted at SHHC for children and youth with CP during the study period, which corresponded to 87 unique charts. Seventy-nine charts were randomly selected (as explained in section 3.4.3) and sixty (76%) met the inclusion criteria, reasons for exclusion were: CP diagnosis not confirmed, degenerative/demyelinization condition, chart not available (deceased). Sample characteristics are shown in table 4.13. Spastic quadriplegia and hemiplegia were the most common type of CP, as well as GMFCS level II, III and V. The majority of assessments were performed at the Vision impairment, Neuromotor and Tone management clinics.           106  Table 4-13  Study IV – Sample Characteristics, Chart Review, N=60  Sample characteristics   Age, mean (standard deviation) in years 7.37 (4.9) Gender, male (%) 34 (58) Type of CP N (%) Spastic diplegia 14(23.3) Spastic quadriplegia 17(28.3) Spastic hemiplegia 17(28.3) Others 12(20.0) GMFCS N†/(%) Level I-II 17(28.8) Level III 13(22.0) Level IV 7(11.9) Level V 22(37.3) Clinic  N (%) Vision Impairment clinic§ 21 (35.0) Neuromotor clinic 11 (18.3) Tone management 6 (10.0) Gait Lab 5 (8.3) Combination of two clinics 7 (11.7) Others* 10 (11.7)  † total add up to 59, one chart did not provide the GMFCS level, § each assessment included a complete developmental assessment. * All clinics that assessed less than 5 children were grouped under Others, including Assistive technology, Brain injury, Feeding, Hearing, Orthopedics, Developmental Pediatrics, and Complex behavior.  (Schiariti, & Mâsse, 2014a) Note: In order to protect the confidentiality of the participants, some categories were grouped to prevent reporting counts equal to 1.    4.4.2 Prevalent Areas of Functioning Covered in Clinical Assessments The information covered in clinical encounters represented 129 unique ICF-CY categories. Eighty-two (64%) categories were coded at the second level, 45 (35%) were coded at 107  the third level and 2 (1%) were coded at the fourth level. The distribution of the 129 different categories by the ICF-CY components were as follow: 19% were body structures, 33% were body functions, 37% were activities and participation and 11% were environmental factors. The most prevalent chapters covered in clinical assessments were e1-Products and technology, b7-Neuromusculoskeletal and movement related-functions, and d4-Mobility. Table 4.14 summarizes the ICF-CY categories identified in at least fifteen percent of the charts and that are ranked in the 80th percentile or higher (arbitrary cut off).  The categories identified in Table 4.14 represent those most frequently encountered in the clinical setting.                 108  Table 4-14 Study IV – Relevant Areas of Functioning Identified in the Chart Review   ICF-CY Categories  % *   Percentile Rank  BODY STRUCTURES s110 Structure of brain 31.7 94 BODY FUNCTIONS b134 Sleep functions 20.0 86 b210 Seeing functions 40.0 98 b230 Hearing functions 28.3 91 b280 Sensation of pain 15.0 81 b510 Ingestion functions 30.0 92 b5106 Vomiting 15.0 81 b530 Weight maintenance functions 20.0 86 b735 Muscle tone functions 60.0 100 b755 Involuntary movement reaction functions 35.0 95 b760 Control of voluntary movement functions 23.3 89 ACTIVITIES AND PARTICIPATION d4103 Sitting 18.3 84 d440 Fine hand use 31.7 94 d450 Walking 30.0 92 d4551 Climbing 20.0 86 d530  Toileting 16.7 83 d820 School education 36.7 97 d920 Recreation and leisure 23.3 89 ENVIRONMENTAL FACTORS e1101 Drugs 58.3 99 e115 Products and technology for personal use in daily living 20.0 86 e1151 Assistive products and technology for personal use in daily living 31.7 94 e1201 Assistive products and technology for personal indoor and outdoor mobility and transportation 36.7 97 e570 Social security services, systems and policies 23.3 89 e575 General social support services, systems and policies 16.7 83 e5800 Health services 56.7 98 e5853 Special education and training services 15.0 81  *percentage of charts covering the categories.  ICF-CY categories more frequently identified (over 80th percentile) organized by ICF -CY components are shown in the table. (Schiariti, & Mâsse, 2014a) 109  4.4.3 Discussion (Study IV Clinical Study) This study identified the prevalent areas of functioning covered in clinical encounters with children and youth with CP. A novel contribution of these findings is that it includes a wide variety of clinics providing a good representation of clinical assessments in this population. The findings showed that health professionals frequently covered areas of body functions and activities and participation. The vast majority of categories represented the main characteristics of children and youth with CP, such as neuromusculoskeletal and movement functions challenges (Koman et al., 2004; Mesterman et al., 2010; Rosenbaum et al., 2007).   Information gathered from clinical encounters with children and youth with CP showed that areas related to sensory and pain functions, digestive functions, neuromusculoskeletal and movement functions, self-care, mobility, products and technology, support and relationships and services are often part of clinical assessments and clinical reports.  In keeping with the literature, most of the areas of functioning identified in this study have been described in many studies as important areas to consider when assessing children and youth with CP (Fehlings et al., 2012; Livingston et al., 2011; Majnemer et al., 2008; Majnemer et al., 2010; Palisano et al., 2011; Penner, Xie, Binepal, Switzer, & Fehlings, 2013; Ramstad et al., 2012; Stewart et al., 2012). Although the majority of areas were related to body functions and activities and participation, all the components of the ICF-CY were usually addressed in these clinical encounters.  In summary, this study highlights the ICF-CY components and specific ICF-CY categories that are frequently represented in clinical encounters with children and youth with CP.  The set of ICF-CY categories identified in this study can guide the development of assessment 110  and evaluation checklists based on the categories. The checklists can be used in clinical practice, for example to record needs, set intervention goals and facilitate the follow-up of this population.    4.5 Comparative Appraisal of the Four Preparatory Studies  This section compares the results of the four preparatory studies.  All ICF-CY categories at the second, third and fourth levels identified in each study were combined; subsequently differences and commonalities between the four preparatory studies were explored.  When the results from the four preparatory studies were aggregated, in total 497 unique ICF-CY categories were identified. Table 4.15 summarizes the ICF-CY components that were identified in each of the four preparatory studies. The representation of ICF-CY components was as follows: 31% body functions, 38% activities and participation, 17% environmental factors, and 14% body structures.  Most of the categories were at the second level 202 (41%) and third level 268 (54%). The remaining categories were at the fourth level 27 (5%).   Overall, the representation of components (body structures, body functions, activities and participation, and environmental factors) varied across studies. Professional experts described areas of functioning that were well distributed across the ICF-CY components (experts’ survey), children and youth with CP and their caregivers highlighted areas within the components activities and participation and environmental factors (qualitative study), while the research community mainly focused on body functions and activities and participation (systematic review).      111   Table 4-15  Distribution of Categories Identified in the Four Preparatory Studies by ICF-CY Components ICF-CY Components   Systematic Review N (%)* Expert Survey Study N (%)* Qualitative Study N (%)* Clinical  Study N (%)*   Four studies combined N (%)  Body Structures  8 (2) 65 (21) 17 (10) 14 (11) 70 (14%)  Body functions  123 (37) 74 (24) 30 (17) 42 (33) 151 (31%)  Activities and Participation  169 (50) 105 (33) 72 (41) 48 (37) 190 (38%)  Environmental Factors  36 (11) 70 (22) 56 (32) 25 (19) 86 (17%)  Total  336 314 175 129 497  ICF-CY; International Classification of Functioning, Disability and Health children and youth version * Percentage within each study. Second to fourth level categories were included in the analysis.  (Schiariti, & Mâsse, 2014b)  Across all studies, 64 out of 497 ICF-CY categories (13%) identified were described in all four studies. Table 4.16 lists the 64 categories that are across studies.  The ICF-CY categories, common in all studies, covered 20 chapters, the most populated chapters were d4-Mobility (15 categories) and e1-Products and technology (7 categories).     112  Table 4-16  ICF-CY Categories Identified in All Four Preparatory Studies Organized by ICF-CY Components and Chapters Table 4-16 ICF-CY Categories Identified in All Four  Preparatory Studies           (Continued) Organized by ICF-CY Components and Chapters  ICF-CY categories identified in all four preparatory studies, N=64  Body Structures s1-Structures of the nervous system s110-Structure of brain s2-The eye, ear and related structures s220-Structure of eyeball s7-Structures related to movement s760-Structure of trunk s7702-Muscles  Body Functions b1-Mental functions b117-Intellectual functions b134-Sleep functions b144-Memory functions b2-Sensory functions and pain b210-Seeing functions b230-Hearing functions b280-Sensation of pain b3-Voice and speech functions b320-Articulation functions b4-Functions of the cardiovascular, haematological, immunological and respiratory systems b440-Respiration functions b5-Functions of the digestive, metabolic and endocrine systems b510-Ingestion functions b5105-Swallowing b525-Defecation functions b560-Growth maintenance functions b7-Neuromusculoskeletal and movement-related functions b735-Muscle tone functions b750-Motor reflex functions b755-Involuntary movement reaction functions b760-Control of voluntary movement functions b770-Gait pattern functions  113  Table 4-16 ICF-CY Categories Identified in All Four  Preparatory Studies           (Continued) Organized by ICF-CY Components and Chapters  ICF-CY categories identified in all four preparatory studies, N=64   Activities and Participation d1-Learning and applying knowledge d137-Acquiring concepts d166-Reading d3-Communication d330-Speaking d331-Pre-talking d4-Mobility d410-Changing basic body position d4103-Sitting d4104-Standing d420-Transferring oneself d440-Fine hand use d445-Hand and arm use d4452-Reaching d450-Walking d4502-Walking on different surfaces d4550-Crawling d4551-Climbing d4552-Running d4553-Jumping d465-Moving around using equipment d4750-Driving human-powered transportation d5-Self-care d510-Washing oneself d530-Toileting d540-Dressing d550-Eating d7-Interpersonal interactions and relationships d750-Informal social relationships d8-Major life areas d820-School education d880-Engagement in play d9-Community, social and civic life d920-Recreation and leisure 114  Table 4-16 ICF-CY Categories Identified in All Four  Preparatory Studies           (Continued) Organized by ICF-CY Components and Chapters  ICF-CY categories identified in all four preparatory studies, N=64 d9200-Play d9201-Sports d9202-Arts and culture d9205-Socializing  Environmental Factors e1-Products and technology e1101-Drugs e115-Products and technology for personal use in daily living e1151-Assistive products and technology for personal use in daily living e120-Products and technology for personal indoor and outdoor mobility and transportation e1201-Assistive products and technology for personal indoor and outdoor mobility and transportation e1251-Assistive products and technology for communication e1650-Financial assets e3-Support and relationships e310-Immediate family e4-Attitudes e425-Individual attitudes of acquaintances, peers, colleagues, neighbours and community members e5-Services, systems and policies e5800-Health services e585-Education and training services, systems and policies e5853-Special education and training services ICF-CY: International Classification of Functioning, Disability and Health children and youth version.  The four preparatory studies contributed different sets of categories. Many ICF-CY categories were identified in more than one study, 190 (38%) out of 497 categories were described in two or three studies. However, each study provided a unique set of categories that were not identified in the other studies – 134 (27%) categories were uniquely identified in the systematic review, 93 (19%) categories were uniquely identified in the expert survey study, 8 (2%) categories were uniquely identified in the qualitative study and 8 (2%) categories were 115  uniquely identified in the clinical study (Complete list of categories per study is shown in Appendix H). As described above, only 64 (13%) were identified by all four studies.  Table 4.17 summarizes the ICF-CY categories that are most commonly identified in each preparatory study. Only those categories that received a percentile rank at or above 90th percentile are included in table 4.17. Each study described a different set of categories within the top percentile ranking, emphasizing different aspects of functioning. For example, the systematic review only included categories representing the components body functions and activities and participation within its top categories, especially many areas related to d4-Mobility. On the contrary, the qualitative study frequently included categories related to environmental factors, in particular those related to entering and exiting public and private buildings (e.g., home, school, shopping malls).  Only one category, d820-School education, was mentioned in the top categories (above 90th percentile) across all studies (Complete list of categories per study is shown in Appendix H).           116  Table 4-17  List of Most Frequent ICF-CY Categories Identified in Each Preparatory Study Table 4-17 List of Most Frequent ICF-CY Categories                                               (Continued) Identified in Each Preparatory Study  ICF-CY categories ranked ≥90 percentile  Preparatory study Systematic Review Expert Survey Qualitative Study Clinical  Study BODY STRUCTURES     s110-Structure of brain  X  X s120-Spinal cord and related structures  X   s220-Structure of eyeball  X   s730-Structure of upper extremity  X   s750-Structure of lower extremity  X X  s760-Structure of trunk  X   s7702-Muscles  X   BODY FUNCTIONS     b117-Intellectual functions  X   b167-Mental functions of language  X   b210-Seeing functions  X  X b230-Hearing functions    X b280-Sensation of pain  X   b510-Ingestion functions    X b515-Digestive functions  X   b7101-Mobility of several joints X    b735-Muscle tone functions X X  X b755-Involuntary movement reaction  X  X b760-Control of voluntary movement functions X    b760-Control of voluntary movements  X   b7611-Specific spontaneous mov. X    b770-Gait pattern functions  X   ACTIVITIES AND PARTICIPATION     d410-Changing basic body position X    d4100-Lying down X    d4101-Squatting X    d4102-Kneeling X    d4103-Sitting X    d4104-Standing X    d4105-Bending X    d4106-Shifting centre of gravity X    d4107-Rolling over X    d415-Maintaining a body position X     117  Table 4-17 List of Most Frequent ICF-CY Categories                                               (Continued) Identified in Each Preparatory Study  ICF-CY categories ranked ≥90 percentile  Preparatory study Systematic Review Expert Survey Qualitative Study Clinical  Study d4152-Maintaining kneeling position X    d4153-Maintaining a sitting position X    d4154-Maintaining a standing X    d4155-Maintaining head position X    d420-Transferring oneself X  X  d4300-Lifting X    d4351-Kicking X    d440-Fine hand use  X X X d4452-Reaching X    d450-Walking X X  X d4500-Walking short distances X    d4550-Crawling X    d4551-Climbing X    d4552-Running X    d4553-Jumping X    d465-Moving around using equipment   X  d510-Washing oneself   X  d530-Toileting X    d540-Dressing   X  d550-Eating X X X  d640-Doing housework X    d710-B. interpersonal interactions X    d820-School education X X X X d920-Recreation and leisure   X  d9200-Play  X   d9201-Sports  X X  ENVIRONMENTAL FACTORS     e1101-Drugs    X e115-ProductS/technology personal use  X   e1151-Assistive products/technology for personal use in daily living    X e1201-Assistive products and technology for personal indoor outdoor mobility/transportation    X e150-Design, construction and building products/ technology for public use  X   e1500-Design, construction and building products and technology for entering and exiting buildings   X  118  Table 4-17 List of Most Frequent ICF-CY Categories                                               (Continued) Identified in Each Preparatory Study  ICF-CY categories ranked ≥90 percentile  Preparatory study Systematic Review Expert Survey Qualitative Study Clinical  Study for public use e1501-Design, construction and building products and technology for gaining access to facilities inside buildings for public use   X  e1550-Design, construction and building products and technology for entering and exiting of buildings for private use   X  e1551-Design, construction and building products and technology for gaining access to facilities in buildings for private use   X  e310-Immediate family  X X  e355-Health professionals  X   e460-Societal attitudes  X X  e5700-Social security services  X   e5800-Health services  X X X e5850-Education and training services  X   e5853-Special education and training services   X  Total  33 30 18 13 ICF-CY: International Classification of Functioning, Disability and Health children and youth version.  4.5.1 Discussion of Comparative Appraisal of the Four Preparatory Studies This study compared all relevant areas of functioning in children and youth with CP from the experts in the field, the research community, the clients, as well as the relevant information from clinical encounters using the ICF-CY coding system. The results of these studies show that the representation of ICF-CY components varies according to whose perspective is considered. Although the studies agreed on some aspects of functioning, each study provided a unique set of categories.  Furthermore, the studies showed that each perspective emphasized or prioritized different areas of functioning, demonstrating the importance of engaging professionals and families when discussing functional goals and planning goal-oriented interventions. 119  After a rigorous data collection methodology, the findings of these studies show that from the 1685 categories included in the pediatric ICF (World Health Organization, 2007), 497 (29%) categories covered the functional profile of children and youth with CP. The majority represented the components body functions and activities and participation. A common set of categories (n=64) was described in all four studies, which represent the hallmark characteristics of CP such as aspects of d4-Mobility, b7-Neuromusculoskeletal related functions, b2-Sensory functions, d3-Communication, and d1-Learning and applying knowledge. Interestingly, environmental factors covered within e1-Products and technology such as assistive products for personal use, for indoor and outdoor mobility, and for communication were also represented in all studies. Of particular importance was the description of b280-Sensation of pain in all four studies, as sensation of pain in children and youth with CP has been showed to be highly associated with low self-reported QOL and frequently limits activity and participation in this population (Fehlings et al., 2012; Penner et al., 2013). It was anticipated that the common set (n=64) will be ultimately included in the ICF Core Sets for children and youth with CP.  The studies identified that some ICF-CY categories (n=190) were covered by two or three studies showing some commonalities between some perspectives. However, each perspective differed in terms of coverage of ICF-CY components and representation of ICF-CY categories, showing the importance of including multiple sources when describing functioning. Importantly, the results demonstrated that each perspective emphasized different aspects of functioning, illustrated by the number of times a category was represented in each study. The international experts in the field identified the role of the environment on functioning, including aspects of e3-Support and relationships, e4-Attitudes and e5-Services, systems and policies. The clients highlighted areas of d9-Recreation and leisure and e1-Products and technology mainly 120  related to design and construction of buildings for publish or private use. Finally, the clinical perspective mainly represented b2-Sensory functions and b7-Neuromusculoskeletal functions.    As the ICF-CY promotes the use of a common language between professionals and clients (World Health Organization, 2007), the children and youth with CP and their caregivers’ opinions should be routinely addressed in needs assessments of children and youth with CP. Considering different perspectives when assessing the functional abilities and/or challenges of this population, will improve the delivery of appropriate and comprehensive interventions.  The preparatory phase of the project collected international, interdisciplinary and representative data to inform the next stage of the development of the ICF Core Sets for children and youth with CP which consists of an international consensus meeting. During the consensus meeting, a selected group of experts used the evidence and based their expertise to create the ICF Core Sets for children and youth with CP.  It was expected that the set of categories would be narrowed down to a practical and useful set which standardize the description of the functional profile of this population.   4.6 Consensus Meeting A multidisciplinary and international group of experts participated in the consensus meeting. The experts reviewed the information gathered in the four preparatory studies and developed the ICF Core Sets for children and youth with CP. This section reports on the results of the consensus meeting.  4.6.1 Expert Participants  Overall 29 experts accepted the invitation, of which 3 excused themselves for personal reasons. Participants who represented all the WHO regions had diverse professional backgrounds 121  (e.g., developmental pediatrics, pediatric neurology, pediatric orthopedic surgery, rehabilitation medicine, occupational therapy, physical therapy, special education), complete description of professional backgrounds and country of origin are shown in Appendix I. Many of them are well-known international leaders in the field of CP. One parent participated in the conference. 4.6.2 ICF Core Sets for Children and Youth with CP During the consensus meeting the experts reviewed the evidence gathered in the four preparatory studies (497 ICF-CY categories). Each category was discussed one by one and decided/agreed if the category needed to be included in the ICF Core Sets for CP. As this was the first consensus meeting on children and youth, pediatric-specific adaptations were made to the methodology. The research team and the participants agreed that the ICF Core Sets should reflect developmental stages, resulting in the decision to develop separate Brief Core Sets for children and youth with CP aged 0 to 6, ≥6 to <14 and 14≥ to 18 years.  Additionally, a Common Brief set was created, that allows the description of the functional abilities of this population over time, as its 25 categories are embedded in each Age-Specific Brief Core Sets.  Five ICF Core Sets were developed during the consensus meeting.  4.6.2.1 Comprehensive ICF Core Set for Children and Youth with CP The first milestone of the consensus meeting was the creation of the Comprehensive ICF Core Set for children and youth aged 0 to 18 years with CP. The experts included 135 ICF-CY categories, 130 categories (96%) at the second level and 5 categories (4%) at the third level. Of the 135 categories, 58 (43%) categories were in the ICF-CY component of activities and participation, 36 (27%) were environmental factors, 34 (25%) body functions and 7 (5%) body structures. As shown in table 4.18, the most frequent chapters covered in the comprehensive set 122  were: d1-Learning and applying knowledge, d4-Mobility, b1-Mental functions, e1-Products and technology, and e5-Services, systems and policies.  4.6.2.2 Common Brief ICF Core Set for Children and Youth with CP Aged 0 to 18 Years The second milestone of the consensus meeting was the creation of the Common Brief ICF Core Set for children and youth with CP, containing the minimum set of categories to describe functioning in children and youth with CP. This Core Set is applicable to children and youth with CP from birth to adolescence and its categories are included in each age-specific Brief Core Set. The experts agreed on 25 categories for inclusion in the common set (8 categories from activities and participation, 8 categories from environmental factors, 8 categories from body functions and 1 from body structures).  As shown in table 4.18, the most common chapters covered in the common set were: d4-Mobility, e1-Products and technology, b1-Mental functions, and b7-Neuromusculoskeletal and movement-related functions.    4.6.2.3 Age-Specific Brief ICF Core Set for Children and Youth with CP The last milestone was the development of the age-specific Brief ICF Core Sets for children and youth with CP. The age-specific Brief ICF Core Sets for children and youth with CP were developed as follows:       1) Brief ICF Core Set for Children with CP Aged 0 to < 6 Years  Representing the youngest group, 6 categories were added to the common set: d880-Engagement in play, d133-Acquiring language, d155-Acquiring skills, e410-Individual attitudes of immediate family members, e355-Health professionals (support and relationship) and b230-Hearing functions. In total, 31 categories were included in the Brief ICF Core Set for children younger than 6 years. (Table 4.18) 123  2) Brief ICF Core Set for Children and Youth with CP Aged ≥6 to <14 Years  Similarly, reflecting the school-aged group, 10 categories were added to the common set:  d820-School education, d920-Recreation and leisure, d175-Solving problems, d350-Conversation, d230-Carrying out daily routine, e130-Products and technology for education, e585-Education and training services, systems and policies, e140-Products and technology for culture, recreation and sport, b1301-Motivation, and b140-Attention functions. In total, 35 categories were included in the Brief ICF Core Set for school age children. (Table 4.18) 3) Brief ICF Core Set for Youth with CP Aged ≥14 to 18 Years Finally, for the group transitioning to young adulthood, 12 categories were added to the common set: d920-Recreation and leisure, d820-School education, d720-Complex interpersonal interactions, d570-Looking after one’s health, d845-Acquiring, keeping and terminating a job, d250-Managing one’s own behaviour, d175-Solving problems, e585-Education and training services, systems and policies, e420-Individual attitudes of friends, e540-Transportation services, systems and policies, b1301-Motivation, b164-Higher-level cognitive functions. In total, 37 categories were included in the Brief ICF Core Set for youth transitioning into adulthood. (Table 4.18)        124  Table 4-18   ICF Core Sets for Children and Youth with CP  Table 4-18  ICF Core Sets for Children and Youth with CP                                         (Continued)    Comprehensive ICF Core Set for CY with CP 0-18 years  Number of Categories N=135 Brief ICF Core Sets for CY with CP Common Brief 0-18  years N=25 Age-Specific Brief Core Set 0 -<6 years N=31 ≥6 - <14 years N=35 ≥14-18 years N=37  code ICF category name       BODY STRUCTURES       s1 Structures of the nervous system     1 s110 Structure of brain X X X X  s3 Structures involved in voice and speech      2 s320 Structure of mouth      s7 Structures related to movement     3 s730 Structure of upper extremity     4 s750 Structure of lower extremity     5 s760 Structure of trunk     6 s7700 Bones     7 s7703 Extra-articular ligaments, fasciae, extramuscular aponeuroses, retinacula, septa, bursae, unspecified       BODY FUNCTIONS       b1 Mental functions     8 b117 Intellectual functions X X X X 9 b126 Temperament and personality functions     10 b1301 Motivation   X X 11 b134 Sleep functions X X X X 12 b140 Attention functions   X  13 b152 Emotional functions     14 b156 Perceptual functions     15 b163 Basic cognitive functions     16 b164 Higher-level cognitive functions    X 17 b167 Mental functions of language X X X X  b2 Sensory functions and pain     18 b210 Seeing functions X X X X  125   Table 4-18  ICF Core Sets for Children and Youth with CP                                         (Continued)    Comprehensive ICF Core Set for CY with CP 0-18 years  Number of Categories N=135 Brief ICF Core Sets for CY with CP Common Brief 0-18  years N=25 Age-Specific Brief Core Set 0 -<6 years N=31 ≥6 - <14 years N=35 ≥14-18 years N=37  code ICF category name     19 b2152 Functions of external muscles of the eye     20 b230 Hearing functions  X   21 b260 Proprioceptive function     22 b280 Sensation of pain X X X X  b3 Voice and speech functions     23 b320 Articulation functions      b4 Functions of the cardiovascular, haematological, immunological and respiratory systems     24 b440 Respiration functions     25 b445 Respiratory muscle functions     26 b4501 Transportation of airways mucus     27 b455 Exercise tolerance functions      b5 Functions of the digestive, metabolic and endocrine systems     28 b510 Ingestion functions     29 b525 Defecation functions     30 b530 Weight maintenance functions      b6 Genitourinary and reproductive functions     31 b620 Urination functions      b7 Neuromusculoskeletal and movement-related functions     32 b710 Mobility of joint functions X X X X 33 b715 Stability of joint functions     34 b730 Muscle power functions     35 b735 Muscle tone functions X X X X 36 b740 Muscle endurance functions     37 b755 Involuntary movement reaction functions     38 b760  Control of voluntary movement   X X X X 39 b765 Involuntary movement functions     126   Table 4-18  ICF Core Sets for Children and Youth with CP                                         (Continued)    Comprehensive ICF Core Set for CY with CP 0-18 years  Number of Categories N=135 Brief ICF Core Sets for CY with CP Common Brief 0-18  years N=25 Age-Specific Brief Core Set 0 -<6 years N=31 ≥6 - <14 years N=35 ≥14-18 years N=37  code ICF category name     40 b770 Gait pattern functions      b8 Functions of the skin and related structures     41 b810 Protective functions of the skin        ACTIVITIES AND PARTICIPATION       d1 Learning and applying knowledge     42 d110 Watching     43 d115 Listening     44 d120 Other purposeful sensing     45 d130 Copying     46 d131 Learning through actions with objects     47 d133 Acquiring language  X   48 d137 Acquiring concepts     49 d140 Learning to read     50 d145 Learning to write     51 d155 Acquiring skills  X   52 d160 Focusing attention     53 d166 Reading     54 d170 Writing     55 d172 Calculating     56 d175 Solving problems   X X 57 d177 Making decisions       d2 General tasks and demands     58 d220 Undertaking multiple tasks     59 d230 Carrying out daily routine   X  60 d250 Managing one’s own behaviour    X              127   Table 4-18  ICF Core Sets for Children and Youth with CP                                         (Continued)    Comprehensive ICF Core Set for CY with CP 0-18 years  Number of Categories N=135 Brief ICF Core Sets for CY with CP Common Brief 0-18  years N=25 Age-Specific Brief Core Set 0 -<6 years N=31 ≥6 - <14 years N=35 ≥14-18 years N=37  code ICF category name     d3 Communication 61 d310 Communicating with - receiving - spoken messages     62 d330 Speaking     63 d331 Pre-talking     64 d335 Producing nonverbal messages     65 d350 Conversation   X  66 d360 Using communication devices and techniques      d4 Mobility     67 d410 Changing basic body position     68 d415 Maintaining a body position X X X X 69 d420 Transferring oneself     70 d430 Lifting and carrying objects     71 d435 Moving objects with lower extremities     72 d440 Fine hand use X X X X 73 d445 Hand and arm use     74 d450 Walking X X X X 75 d455 Moving around     76 d460 Moving around in different locations X X X X 77 d465 Moving around using equipment     78 d470 Using transportation      d5 Self-care     79 d510 Washing oneself     80 d520 Caring for body parts     81 d530 Toileting X X X X 82 d540 Dressing     83 d550 Eating X X X X 84 d560 Drinking     85 d570 Looking after one’s health    X   d6  Domestic life     128   Table 4-18  ICF Core Sets for Children and Youth with CP                                         (Continued)    Comprehensive ICF Core Set for CY with CP 0-18 years  Number of Categories N=135 Brief ICF Core Sets for CY with CP Common Brief 0-18  years N=25 Age-Specific Brief Core Set 0 -<6 years N=31 ≥6 - <14 years N=35 ≥14-18 years N=37  code ICF category name     86 d630 Preparing meals     87 d640 Doing housework      d7 Interpersonal interactions and relationships     88 d710 Basic interpersonal interactions X X X X 89 d720 Complex interpersonal interactions    X 90 d750 Informal social relationships     91 d760 Family relationships X X X X 92 d770 Intimate relationships      d8 Major life areas     93 d815 Preschool education     94 d820 School education   X X 95 d845 Acquiring, keeping and terminating a job    X 96 d860 Basic economic transactions     97 d880 Engagement in play  X    d9 Community, social and civic life     98 d910 Community life     99 d920 Recreation and leisure   X X   ENVIRONMENTAL FACTORS      e1 Products and technology     100 e110 Products or substances for personal consumption     101 e115 Products and technology for personal use in daily living X X X X 102 e120 Products and technology for personal indoor and outdoor mobility and transportation X X X X 103 e125 Products and technology for communication X X X X 104 e130 Products and technology for education   X  105 e140 Products and technology for culture, recreation and sport   X  106 e150 Design, construction and building products and technology of X X X X 129   Table 4-18  ICF Core Sets for Children and Youth with CP                                         (Continued)    Comprehensive ICF Core Set for CY with CP 0-18 years  Number of Categories N=135 Brief ICF Core Sets for CY with CP Common Brief 0-18  years N=25 Age-Specific Brief Core Set 0 -<6 years N=31 ≥6 - <14 years N=35 ≥14-18 years N=37  code ICF category name     buildings for public use 107 e155 Design, construction and building products and technology of buildings for private use     108 e160 Products and technology of land development     109 e165 Assets      e3 Support and relationships     110 e310 Immediate family X X X X 111 e315 Extended family     112 e320 Friends X X X X 113 e325 Acquaintances, peers, colleagues, neighbours and community members     114 e330 People in positions of authority     115 e340 Personal care providers and personal assistants     116 e355 Health professionals  X    e4 Attitudes     117 e410 Individual attitudes of immediate family members  X   118 e415 Individual attitudes of extended family members     119 e420 Individual attitudes of friends    X 120 e425 Individual attitudes of acquaintances, peers, colleagues, neighbours and community members     121 e430 Individual attitudes of people in positions of authority     122 e440 Individual attitudes of personal care providers and personal assistants     123 e450 Individual attitudes of health professionals     124 e460 Societal attitudes X X X X 125 e465 Social norms, practices and ideologies     130   Table 4-18  ICF Core Sets for Children and Youth with CP                                         (Continued)    Comprehensive ICF Core Set for CY with CP 0-18 years  Number of Categories N=135 Brief ICF Core Sets for CY with CP Common Brief 0-18  years N=25 Age-Specific Brief Core Set 0 -<6 years N=31 ≥6 - <14 years N=35 ≥14-18 years N=37  code ICF category name      e5 Services, systems and policies     126 e525 Housing services, systems and policies     127 e540 Transportation services, systems and policies    X 128 e550 Legal services, systems and policies     129 e555 Associations and organizational services, systems and policies     130 e560 Media services, systems and policies     131 e570 Social security services, systems and policies     132 e575 General social support services, systems and policies     133 e580 Health services, systems and policies X X X X 134 e585 Education and training services, systems and policies   X X 135 e590 Labour and employment services, systems and policies      ICF; International Classification of Functioning pediatric version, CY; children and youth, CP; Cerebral Palsy,     N= number of ICF-CY categories included in the ICF Core Set; X= denotes included in the Brief ICF Core Set. (Schiariti, Selb, Cieza, & O’Donnell, 2014)  The experts strived to create concise yet accurate ICF Core Sets, capturing the key characteristics and relevant contextual factors of children and youth with CP. The experts were challenged to keep the ICF Core Sets practical and applicable. As expected, categories related to mobility, self-care, movement-related functions, pain, seeing functions, structures of upper and lower extremities were included almost unanimously by the experts. Some categories were 131  excluded to avoid redundancy. For example, b761-Spontaneous movements was excluded as its content was represented by other included categories. Furthermore, some categories were excluded based on very specific definitions, relevant only for a certain age group. As such, d475-Driving was excluded - it is mainly applicable to a small group of youth; moreover, different countries have different age requirements for driving.      4.6.3 Discussion Consensus Meeting This consensus meeting provided a platform whereby the group of international multidisciplinary experts was enabled to consider the evidence collected in the preparatory phase of the project, engage in discussion, and – ultimately - select the categories of the ICF Core Sets for children and youth with CP via a rigorous consensus process. During the consensus meeting, the experts advocated for the inclusion of ICF-CY categories that were meaningful, practical and relevant for children and youth with CP. The clinical value of the ICF-CY tools generated by this consensus process is guaranteed in part by the diversity of the participants who engaged in this process – they contributed varying expertise and perspectives from the health and education sectors to the meeting. As such, this process produced the first pediatric ICF-CY- based tools that will facilitate a systematic description of the functional profile of children and youth with CP worldwide.  Five ICF Core Sets were created for this population: a Comprehensive ICF Core Set, a Common Brief ICF Core Set and three age-specific Brief ICF Core Sets from children and youth with CP.   4.6.3.1 ICF Core Sets for Children and Youth with CP The content of the five ICF Core Sets for children and youth with CP shares many commonalities; yet, each one of them features a unique representation of the ICF-CY components. The Comprehensive ICF Core Set for children and youth with CP includes ICF-CY 132  categories representing all ICF-CY components; however, the component activities and participation is the most commonly represented (43%), followed by environmental factors (27%) and body functions (25%). The Common Brief ICF Core Set contains ICF-CY categories which evenly represent the components activities and participation (32%), environmental factors (32%), and body functions (32%), while the age-specific Brief ICF Core Sets contain mostly categories of the components activities and participation and environmental factors. The most notable difference between the three age-specific Brief ICF Core Sets is the representation of varying chapters within the components activities and participation and environmental factors. The age-specific Brief ICF Core Sets for children and youth aged ≥6 to <14 years and for youth ≥14 to 18 years include chapters: d2- General tasks and demands, d3-Communication and d9-Community, social and civic life.  These are lacking from the age-specific Brief ICF Core Set for the younger group.  These differences reflect the developmental trajectories of children and youth with CP, with more complex activities and tasks included in the older groups (e.g., Managing one’s own behaviour, conversation, etc).  The component body structures is the least represented across all ICF Core Sets for children and youth with CP.  Furthermore, the Comprehensive ICF Core Set for children and youth with CP includes categories representing 24 out of the 30 ICF-CY chapters, showing a diverse coverage of the ICF-CY classification.  The most prevalent chapters represented in the Comprehensive ICF Core Set are d1-Learning and applying knowledge, d4-Mobility, b1-Mental functions, e1-Products and technology and e5-Services, systems and policies. The following ICF-CY chapters are not represented in the Comprehensive ICF Core Set:  e2-Natural environment and human-made changes to environment, s2-The eye, ear and related structures, s4-Structures of the cardiovascular, immunological and respiratory systems, s5-Structures related to the digestive, 133  metabolic and endocrine systems, s6-Structures related to the genitourinary and reproductive systems, s8-Skin and related structures.  The lack of representation of the six chapters (e2, s2, s4, s5, and s6) may be explained by the underrepresentation of ICF-CY categories included in those chapters in the four preparatory studies. Although, the content of the chapters excluded from the Comprehensive ICF Core Set may be of importance for some children and youth with CP, the areas of functioning included in those chapters may not be frequently addressed in children and youth with CP.  As expected, a vast majority of the ICF-CY categories (89%) identified in all four preparatory studies are included in the Comprehensive ICF Core Set for children and youth with CP. In addition, all chapters represented in the common set of categories (n=64) identified across all four studies, are included in the Core Set.  Finally, while the Comprehensive ICF Core Set includes a good representation of all relevant aspects of functioning in children and youth with CP, some functional areas are not fully represented in the Brief ICF Core Sets. For example areas of d3-Communication and d1-Learning and applying knowledge are not covered in the Common Brief Core and are partially covered in the age-specific Brief Core Sets. It is expected that the application of the ICF Core Sets in day-to day practice will guide future revisions to address this limitation.   4.7 Practical Applications of the ICF Core Sets for Children and Youth with CP The ICF Core Sets for children and youth with CP can be used to describe the functional profile of this population.  The Comprehensive ICF Core Set includes those ICF-CY categories which reflect the entire spectrum of functioning of children and youth with CP. Due to the extensive range of categories included in this Core Set (n=135), the Comprehensive ICF Core 134  Set allows a thorough description of functioning in this population. Conversely, the Common Brief ICF Core Set features the ICF-CY categories which target key aspects of functioning, common to all children and youth with CP.  It can serve as the minimal standard for describing functioning efficiently in clinical and epidemiological studies.  Moreover, the Common Brief ICF Core Set allows for systematic monitoring of functioning over time; its 25 categories are embedded in each age-specific Brief ICF Core Sets. And the age-specific Brief ICF Core Sets include ICF-CY categories which describe areas of functioning unique for each age group.   Each of the ICF Core Sets for children and youth with CP can be used independently. Their use will vary depending on the intended purpose: interdisciplinary assessments of functioning (Comprehensive ICF Core Set), brief clinical encounters (Common Brief ICF Core Set), before and after description of a child’s level of functioning (Common Brief ICF Core Set or age-specific Brief ICF Core Sets), follow-up of functional abilities (Common Brief ICF Core Set or age-specific Brief ICF Core Sets).   To summarize, the Comprehensive ICF Core Set for children and youth with CP is intended for use in complex clinical presentations and/or multidisciplinary assessments performed in tertiary level care facilities. The Common Brief ICF Core Set and the age-specific Brief ICF Core Sets can be used in routine clinical assessments with children and youth with CP including all CP types and levels of function.  Figure 4.1 illustrates an application of the Common Brief ICF Core Set for children and youth with CP. The checklist provides a descriptive functional profile, including key aspects of body functions, activities and participation and relevant contextual factors.  As shown in Figure 4.1, checklists can be developed based on the ICF-CY categories included in each Core Set. The checklists serve as a guide for clinicians during assessments to avoid overlooking aspects of 135  functioning that are likely to be of interest for a child or youth with CP. Information gathered using patient-reported questionnaires, clinical examinations, and/or technical investigations can be summarized using the checklists.  Furthermore, applying the ICF linking rules to assign ICF-CY categories (e.g., match the clinical findings to specific ICF-CY categories in the checklist) (Cieza, 2005b) allows the technical jargon of clinical assessments to be translated into the ICF-CY categories contained in the checklist. One must note; however, it is critical to include a general rating scale of the ICF-CY categories included in the checklist in order to provide a meaningfully descriptive functional profile. One such option: the ICF-CY qualifiers can be applied to represent the degree of impairment, limitation, restriction or barrier in specific areas of functioning. Ranging from 0=no problem to 4=complete problem, the ICF-CY qualifiers can be assigned to each one of the ICF-CY categories to denote needs, functional strengths and/or limitations, as well as environmental and personal factors influencing functioning. This use of a rating scale then allows an objective means to plan interventions based on the information contained in the checklist. The checklists can guide the selection of outcome measures that align with the content of the ICF Core Sets for children and youth with CP and describe response to interventions overtime.          136                      ICF-CY: International Classification of Functioning, Disability and Health children and youth version. ICF-CY Qualifiers in body functions, body structures and activities and participation: 0=no problem/strength, 1= mild problem, 2= moderate problem, 3= severe problem and 4= complete problem.  ICF –CY Qualifiers in environmental factors: 0= no barrier/facilitator, +1= mild facilitator, +2= moderate facilitator, +3= substantial facilitator, +4= complete facilitator, 1= mild barrier, 2= moderate barrier, 3= substantial barrier, 4= complete barrier (World Health Organization, 2007; Bickenback et al., 2012). § The component personal factors (pf) does not have ICF-CY categories assigned, therefore some examples of themes representing personal factors are provided.  Figure 4-1  Functional Profile of a Child Using the Common Brief ICF Core Set for Children and Youth with CP  Body Structures, Body Functions, Activities and Participation ICF-CY Qualifier*  challenge  0 1 2 3 4 s110 Structure of brain       b117 Intellectual functions       b134 Sleep functions       b167 Mental functions of language       b210 Seeing functions       b280 Sensation of pain       b710 Mobility of joint functions       b735 Muscle tone functions       b760 Control of voluntary movement functions       d415 Maintaining a body position       d440 Fine hand use       d450 Walking       d460 Moving around in different locations       d530 Toileting       d550 Eating       d710 Basic interpersonal interactions       d760 Family relationships       Influence of environmental factors on functioning facilitator barrier +4 +3 +2 +1 0  1 2 3 4 e115 Products and technology for personal use in daily living       e120 Products/technology for personal indoor/outdoor mobility       e125 Products and technology for communication       e150 Design, construction and building products for public use      e310 Immediate family       e320 Friends       e460 Societal attitudes       e580 Health services, systems and policies       Influence of personal factors§ on functioning positive neutral negative + 0 - Pf Motivation      Pf Coping strategies in relation to pain      137  In keeping with the applications of the ICF Core Sets for adult health conditions, the ICF Core Sets for children and youth with CP can also be applied as follows:  1) to describe and guide the assessment of functioning and disability in clinical encounters or clinical studies (Glassel et al., 2012; Rauch, Cieza, & Stucki, 2008; Rauch et al., 2010), 2) to study the content validity of patient-reported instruments (Cieza, 2005a),  3) to develop clinical measures that enable the assessment of functioning and disability (Alguren, Bostan, Christensson, Fridlund, & Cieza, 2011; Cieza, Hilfiker, Boonen et al., 2009; Cieza, Hilfiker, Chatterji et al., 2009; Kiltz et al., 2011; Peyrin-Biroulet et al., 2012),  4) to develop patient-reported instruments (e.g., WHODA 2) (Garin et al., 2010), and 5) to instruct clinicians and health professionals in training (Cieza & Stucki, 2007). Despite their multiple applications, it is important to note that the ICF Core Sets are sets of ICF categories aimed at operationally defining functioning and disability in reference to persons with health conditions. However, the ICF Core Sets do not address “how to measure” each of the ICF categories contained within them. Thus, there is a critical need to develop measurement standards based on the ICF Core Sets. A methodological approach has been developed based on Rasch analyses to identify those ICF categories of a determined ICF Core Set which differentiate among patients with different levels of functioning and disability and that, on the basis of which, a summary score can be created (Cieza, Hilfiker, Boonen et al., 2009; Peyrin-Biroulet et al., 2012). Based on this methodology, clinicians and researchers will not rely solely on profiles of functioning - the starting point for planning interventions - but also on summary scores.  These scores will provide an estimate of the overall level of functioning of clients to monitor disease, response to interventions, and to follow clients along the continuum of care and over a life span (Cieza, Hilfiker, Boonen et al., 2009; Peyrin-Biroulet et al., 2012).   138  Chapter  5: Conclusion CP is a life-long disorder which has implications for the children and youth’s schooling and vocational development. As such, children and youth with CP rely on many health and educational services. In order to improve their functioning, QOL and educational outcomes, it is crucial to understand the functional abilities of children and youth living with CP and the challenges they face in performing everyday activities.  The ICF-CY is the current accepted international classification that contains the whole universe of meaningful units necessary to describe the experiences of children and youth in relation to functioning, disability and health. These meaningful units contained in the ICF-CY are called ICF-CY categories and are the units of the classification. The comprehensiveness of the ICF-CY poses a challenge to its application in clinical practice. Therefore, user friendly ICF-CY-based tools like the ICF Core Sets are needed. The ICF Core Sets standardize the description of functioning and disability, guiding data collection and allowing comparisons across studies.  Rigorous, systematic data collection is essential to ensure excellence in research. For CP, this excellence can be achieved if the ICF Core Sets for children and youth with CP are used consistently across settings and worldwide. This dissertation outlines the steps that comprised the development of the ICF Core Sets for children and youth with CP. The Core Sets are an evidence-based framework guiding clinicians and researchers in the study of “what” areas of functioning are critical in this population.  Specifically, the ICF Core Sets for children and youth with CP are novel tools - based on the ICF-CY - which standardize the description of the functional profile of this population. The ICF-CY categories featured in the Core Sets can guide professionals in the selection of relevant measures, or combination of measures, for the assessment and management of children and youth with CP. Moreover, the ICF Core Sets will 139  complement diagnostic information with much needed functional information, essential for planning and delivering appropriate interventions, based on prognosis, and measuring outcomes appropriately.  In accordance with the overall purpose and specific aims of this project, the development of the ICF Core Sets for children and youth with CP produced five ICF Core Sets applicable to children aged 0 to 18 years, within all levels of functioning, in clinical and research settings. The five Core Sets include: a comprehensive ICF Core Set (n=135 ICF-CY categories), a Common Brief ICF Core Set (n=25 ICF-CY categories), and three age-specific Brief ICF Core Sets (0 to <6 years, ≥6 to <14years, and ≥14 to18 years consisting of n=31, n=35 and n=37 ICF-CY categories, respectively). These Core Sets reflect all relevant perspectives regarding important areas of functioning in children and youth with CP. Of particular importance was the inclusion, for the first time, of the children and youth’s with CP perspectives on functioning. The predominant ICF-CY components featured in all ICF Core Sets are: body functions, activities and participation and environmental factors. ICF-CY categories related to mobility, self-care, movement-related functions, pain, seeing functions, products and technology, and support and relationships are represented in each of the ICF Core Sets.  Each one of the ICF Core Sets for children and youth with CP can be used independently.  The comprehensive set can be applied in interdisciplinary assessments; different team members can focus their assessment on targeted components of the Core Set. An important characteristic of the ICF Core Sets for children and youth and CP is the consideration of developmental trajectories that children and youth with CP follow throughout growth. This feature is capitalized upon with the use of the Common Brief Core Set, with or without the different age-specific Brief ICF Core Sets. The Common Brief Core Set allows for monitoring of functioning over time; its 140  25 ICF-CY categories are embedded in each age-specific Brief Core Sets. Additionally, the age-specific Brief Core Sets describe areas of functioning unique to each age group.  5.1 Overall Significance and Contributions The development of the ICF Core Sets for children and youth with CP produced not only novel and valuable ICF-CY-based tools, but also provided a detailed description of all relevant perspectives on areas of functioning in children and youth with CP.  The consistent application of the ICF-CY classification as a reference throughout the preparatory phase of the project allowed the comparison of the results of the four independent studies, which illustrated the contribution of each study and validated the need for considering multiple perspectives for pediatric ICF Core Sets development.   The ICF Core Sets for children and youth with CP are the first ICF-CY-tools developed for a pediatric population. Consequently, the project faced many challenges. New protocols were proposed, adapting the ICF Core Set development methodology to consider the developmental trajectories of children and youth. The standards of data collection proposed by for this project parallel both the Canadian Institutes of Health Information (CIHI) and the European standards of ICF data collection.  Thus, the international community has welcomed this pioneering work on the development of the ICF Core Sets for children and youth with CP.  Globally, experts recognize the value of these tools in facilitating the application of the ICF-CY in day-to-day practice, while also streamlining comparison of results across studies worldwide. As such, other research teams are applying the new methodological guidelines developed in this project to create ICF Core Sets for pediatric conditions, including Autism and Attention Deficit Hyperactivity Disorder (personal communication, M. Selb, June 2013).  The adoption of these 141  protocols highlights a critical contribution this project has made to the field of pediatric disability research and practice. 5.2 Strengths and Limitations The development of the ICF Core Sets for children and youth with CP included a truly international collaboration.  This process integrated multidisciplinary perspectives – most importantly the opinion of children and youth with CP and their caregivers - on relevant areas of functioning. During the preparatory phase of the project, special efforts were made to include a representative study sample (e.g., international experts with diverse backgrounds from all WHO health regions) that would allow for the generalization of our results to the CP population worldwide.  Consequently, the participants of the consensus meeting consisted of an international multidisciplinary group of world leaders in the field of CP.  Thus, after following a rigorous evidence-based and inclusive methodology, the ICF Core Sets for children and youth with CP are available to the international community working with children and youth with CP in clinical, research, and policy settings.  Despite efforts to gather the most representative study sample possible for each preparatory study, the following recruitment limitations were encountered in each study: Study I: As part of the systematic review, each outcome measure described in the literature was not retrieved and linked to the ICF-CY.  Nonetheless, the majority (82%) of the measures were linked, including those most frequently used, which provides a good representation of the overall content of measures used in CP. In addition, only measures that were in English were included, which may have under-represented the scope of outcome measures used worldwide. However, since many of measures excluded due to “language other than English” were adaptations of 142  original English versions (which met inclusion criteria), the results of this systematic review capture the vast majority of the measures used in this population.   Study II: As part of the expert survey study, some participants encountered technical difficulties during the data collection (e.g., poor internet connectivity), limiting enrollment and participation of experts from Africa, reducing the representativeness of the sample in that region. It should be noted as well that despite the efforts, some professional groups were under represented (e.g., nurses, social workers). In addition, for the survey, only two age groups were included; increasing the number of age groups may have led to inclusion of categories reflecting additional developmental issues. Finally, some respondents were not very familiar with the ICF-CY components and found some questions challenging to answer (e.g., personal factors).  This suggests that there is a need to disseminate the knowledge and use of the ICF-CY among professionals working with children and youth with CP.     Study III: The qualitative study sample was drawn from community and clinical settings in BC, Canada. Although the province of BC includes a multicultural population, the findings of the qualitative study might not represent the perspectives of the international CP community. In addition, despite efforts, the number of male children was higher than female children interviewed. Perspectives of functioning may differ by gender; thus, no comparisons of any of the findings were made based on gender.  Finally, the number of female caregivers was higher than male caregivers. The results may have differed if more male caregivers’ perspectives had been examined.   Study IV: As part of the clinical study, some limitations were encountered. Given the retrospective data collection, the study relied on reports from professionals which may have described some, but not all of the areas of functioning addressed during the assessments. 143  However, information was extracted on all reports available (all disciplines) in the charts, providing a complete description of the child’s functional profile.  Additionally, the sample was drawn from the provincial tertiary rehabilitation center in BC, Canada. As mentioned previously, the province of BC includes a multicultural population; however, the findings of the clinical study might not represent the clinical perspectives of the international CP community. Comparative appraisal of the four preparatory studies. The results across the four studies included in the preparatory phase of the project were compared. The smaller number of unique categories identified in the qualitative and clinical studies may reflect the reduced sample sizes of these two studies (n=32 and n=60, respectively) (Schiariti et al., 2014; Schiariti, & Mâsse, 2014a) versus the systematic review and expert survey (n=231 and n=193, respectively) (Schiariti et al., 2014a; Schiariti et al., 2014b). Despite these reduced sample sizes, the qualitative and clinical studies provided a significant number of categories. Moreover, saturation was reached with 32 participants in the qualitative study; thus, recruitment was complete. Consensus meeting. As part of the consensus meeting, some limitations were encountered.  Firstly, despite the efforts some professional groups were underrepresented (e.g., speech-language therapists, nurses, and social workers). Secondly, although all WHO regions were represented, the vast majority of participants were from the Americas region; having equal representation of regions might have resulted in inclusion of additional categories related to different cultural backgrounds.   Finally, other potential threats to external validity were identified. Firstly, all the preparatory studies and the consensus meeting included English-speaking study samples. Cultural differences between English-speaking and non-English speaking populations may influence the ability to make generalizations when describing functioning in non-English 144  speaking populations.  Secondly, the qualitative study sample represented the perspectives of children and youth with CP and caregivers in a developed country such as Canada. The inclusion of an international study sample, representing developing and developed countries may have provided different perspectives on functioning, in particular in the components activities and participation and environmental factors. Despite these threats to external validity, each preparatory study described the main areas of functioning in a representative sample of children and youth with CP – including all age-groups, all types of CP, all GMFCS levels, and similar males to females’ ratio – which closely mirrored the characteristics of the population of children and youth with CP. Therefore, I am confident that the ICF Core Sets for children and youth with CP can be generalized to the entire population of children and youth with CP worldwide.   5.3 Applications of the ICF Core Sets for Children and Youth with CP The ICF Core Sets for children and youth with CP provide a meaningful application of the ICF-CY in daily practice; the reduced number of ICF-CY categories included in each ICF Core Set makes it feasible and user friendly. In practice, the ICF Core Sets for children and youth with CP can be used to identify “needs” based on the functional challenges and environ-mental barriers encountered in activities of daily living. Identification of such factors shapes the planning and delivery of appropriate interventions based on knowledge of prognosis, and therapeutic strategies for children and youth with CP. The Core Sets will guide researchers and clinicians working with children and youth with CP worldwide to identify assessment tools and/or outcome measures which target relevant areas of functioning and disability. Use of the Core Sets will promote a common language among team members - “the ICF-CY categories” – for describing functioning. In order to achieve this common language, the original technical terminology of the clinical assessment tools has to be translated or “linked” to the corresponding 145  ICF-CY categories using established linking rules (Cieza, 2005b). This application will facilitate adoption of a more comprehensive approach, pushing beyond impairments in body structures and body functions. Furthermore, as demonstrated with ICF Core Sets for adult conditions (Glassel et al., 2012; Rauch et al., 2008; Rauch et al., 2010), the systematic application of the Core Sets for children and youth with CP will ease communication among interdisciplinary teams by providing a common framework for documenting the functioning of this population.  5.4 Future Directions To facilitate the dissemination and application of the ICF-CY, particularly the ICF Core Sets for children and youth with CP, a series of knowledge translation activities should be planned. The imminent focus is on the publication of case studies and an electronic web-tool illustrating regular clinical encounters with children with CP across GMFCS levels. The case studies should feature practical examples of how to translate the clinical findings into the ICF Core Sets framework, highlighting how that information can guide goal-setting, patient management, and consider all elements of practice. Another focus for future work draws on the need for an ICF-CY-based, psychometrically sound outcome measure for children and youth with CP.  Although the ICF Core Sets highlight “what to measure” in children and youth with CP, clinicians and researchers seek tools addressing “how to measure” those relevant areas of functioning. Thus, the results of this dissertation can be used to create an ICF-CY-based measure which will target all aspects of functioning as described in the ICF Core Sets for children and youth with CP.  This ICF-CY-based measure can serve to track the functional trajectory of children and youth with CP.    Thus, the case has been made: There is a need for comprehensive ICF-CY-based tools – namely, the ICF Core Sets for children and youth with CP - to assess and describe systematically 146  the functional status and health of this population. The ICF Core Sets for children and youth described in this dissertation provide a novel, standardized means to describe the functional profile of these children and youth. The diversity of the data collection for this project provided a unique opportunity to integrate various perspectives from the health and education sectors, producing valuable ICF-CY-based tools. I believe strongly that the ICF Core Sets for children and youth with CP are a useful contribution to pediatric disability research and practice, that will improve the delivery of care, needs assessment and research approaches in the field of CP.                 147  Bibliography Adolfsson, M. (2011).  Applying the ICF-CY to identify everyday life situations of children and youth with disabilities.  Scholl of Education and Communication Jönköping University. Dissertation No.14 (Studies from SIDR No. 39) (www.hlk.hj.se) Adolfsson, M., Malmqvist, J., Pless, M., & Granuld, M. (2011). Identifying child functioning from an ICF-CY perspective: Everyday life situations explored in measures of participation. Disability and Rehabilitation, 33(13-14), 1230-1244.  Aiachini, B., Pisoni, C., Cieza, A., Cazzulani, B., Giustini, A., & Pistarini, C. (2010). Developing ICF core set for subjects with traumatic brain injury: An italian clinical perspective. European Journal of Physical and Rehabilitation Medicine, 46(1), 27-36.  Alguren, B., Bostan, C., Christensson, L., Fridlund, B., & Cieza, A. (2011). A multidisciplinary cross-cultural measurement of functioning after stroke: Rasch analysis of the brief ICF core set for stroke. Topics in Stroke Rehabilitation, 18(1), 573-586.  Andersen, G. L., Irgens, L. M., Haagaas, I., Skranes, J. S., Meberg, A. E., & Vik, T. (2008). Cerebral palsy in Norway: Prevalence, subtypes and severity. European Journal of Paediatric Neurology, 12(1), 4-13.  Armstrong, D. (1987). Theoretical tensions in biopsychosocial medicine. Social Science & Medicine, 25(11), 1213-1218.  Avila, C., Cieza, A., Chatterji, S., Cabello, M., Vieta, E., & Ayuso-Mateos, J. L. (2009). Identification of relevant problems of individuals with bipolar disorder: A worldwide expert survey. European Psychiatry.Conference: 17th European Psychiatric Association, EPA Congress Lisbon Portugal.Conference Start: 20090124 Conference End: 20090128.Conference Publication: (Var.Pagings), 24, S564.  148  Avila, C. C., Cabello, M., Cieza, A., Vieta, E., & Ayuso-Mateos, J. L. (2010). Functioning and disability in bipolar disorders: A systematic review of literature using the ICF as a reference. Bipolar Disorders, 12(5), 473-482.   Avila, C. C., Cieza, A., Anaya, C., & Ayuso-Mateos, J. L. (2012). The patients' perspective on relevant areas and problems in the bipolar spectrum disorder: Individual interviews using the international classification of functioning, disability and health as a reference tool. American Journal of Physical Medicine & Rehabilitation, 91(13 Suppl 1), S181-8.   Badley, E. M. (2008). Enhancing the conceptual clarity of the activity and participation components of the international classification of functioning, disability, and health. Social Science & Medicine (1982), 66(11), 2335-2345.  Bartlett, D. J., Hanna, S. E., Avery, L., Stevenson, R. D., & Galuppi, B. (2010). Correlates of decline in gross motor capacity in adolescents with cerebral palsy in gross motor function classification system levels III to V: An exploratory study. Developmental Medicine and Child Neurology, 52(7), e155-e160.  Battaglia, M., Russo, E., Bolla, A., Chiusso, A., Bertelli, S., Pellegri, A., et al. (2004). International classification of functioning, disability and health in a cohort of children with cognitive, motor, and complex disabilities. Developmental Medicine and Child Neurology, 46(2), 98-106.  Bax, M. C. (1964). Terminology and classification of cerebral palsy. Developmental Medicine and Child Neurology, 11, 295-297.  Bax, M. C., Flodmark, O., & Tydeman, C. (2007). Definition and classification of cerebral palsy. from syndrome toward disease. Developmental Medicine and Child Neurology, 49 (Supp, 109), 39-41.  149  Beckung, E., & Hagberg, G. (2002). Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy. Developmental Medicine and Child Neurology, 44(5), 309-316.  Bickenbach, J. E., Chatterji, S., Badley, E. M., & Ustun, T. B. (1999). Models of disablement, universalism and the international classification of impairments, disabilities and handicaps. Social Science & Medicine, 48(9), 1173-1187.  Bickenbach, J., Cieza, A., Rauch, A., & Stucki, G. (Eds). (2012). International Classification of Functioning, Disability and Health Core Sets: manual for clinical practice. ICF Research Branch in cooperation with the World Health Organization Collaborating Centre for the Family of International Classifications in Germany (at DIMDI). Germany, Hogrefe publishing. Bjorck-Akesson, E., Wilder, J., Granlund, M., Pless, M., Simeonsson, R., Adolfsson, M., et al. (2010). The International Classification of Functioning, Disability and Health and the version for children and youth as a tool in child habilitation/early childhood intervention--feasibility and usefulness as a common language and frame of reference for practice. Disability and Rehabilitation, 32 (Suppl 1), S125-138.  Bjornson, K. F., Zhou, C., Christakis, D. A., & Stevenson, R. D. (2012). Activity capacity to participation in cerebral palsy: Evidence of an indirect path via performance. Developmental Medicine and Child Neurology, 54 (Suppl s6), 30-79.  Blair, E., & Watson, L. (2006). Epidemiology of cerebral palsy. Seminars in Fetal and Neonatal Medicine, 11 (2), 117-125.  Boyle, C. A., Yeargin-Allsopp, M., Doernberg, N. S., Holmgreen, P., Murphy, C. C., & Schendel, D. E. (1996). Prevalence of selected developmental disabilities in children 3-10 150  years of age: The metropolitan Atlanta developmental disabilities surveillance program, 1991. MMWR CDC Surveillance Summaries, 45(2), 1-14.  Cans, C. (2000). Surveillance of cerebral palsy in Europe: A collaboration of cerebral palsy surveys and registers. Developmental Medicine and Child Neurology, 42(12), 816-824.  Cans, C., De-la-Cruz, J., & Mermet, M. -. (2008). Epidemiology of cerebral palsy. Paediatrics and Child Health, 18(9), 393-398.  Cans, C., Dolk, H., Platt, M. J., Colver, A., Prasauskiene, A., & Kragel-Oh-Mann, I. (2007). Recommendations from the SCPE collaborative group for defining and classifying cerebral palsy. Developmental Medicine and Child Neurology, 49(Suppl. 2), 35-38.  Caplan, R., Siddarth, P., Stahl, L., Lanphier, E., Vona, P., Gurbani, S., et al. (2008). Childhood absence epilepsy: Behavioral, cognitive, and linguistic comorbidities. Epilepsia, 49(11), 1838-1846. Carlon, S., Shields, N., Yong, K., Gilmore, R., Sakzewski, L., & Boyd, R. (2010). A systematic review of the psychometric properties of quality of life measures for school aged children with cerebral palsy. BMC Pediatrics, 10, 81-92. Cieza, A., Ewert, T., Ustun, T. B., Chatterji, S., Kostanjsek, N., & Stucki, G. (2004). Development of ICF core sets for patients with chronic conditions. Journal of Rehabilitation Medicine, (Suppl 44), 9-11.  Cieza, A., Hilfiker, R., Boonen, A., van der Heijde, D., Braun, J., & Stucki, G. (2009). Towards an ICF-based clinical measure of functioning in people with ankylosing spondylitis: A methodological exploration. Disability and Rehabilitation, 31(7), 528-537.  Cieza, A., Hilfiker, R., Chatterji, S., Kostanjsek, N., Ustun, B. T., & Stucki, G. (2009). The  151  International Classification of Functioning, Disability and Health could be used to measure functioning. Journal of Clinical Epidemiology, 62(9), 899-911.  Cieza, A., & Stucki, G. (2007). Applying the ICF and ICF core sets for chronic widespread pain. In C. D. Wittink H (Ed.), Pain management: Evidence, outcomes, and quality of life. A Sourcebook  pain research and clinical management series.  (pp. 161-170) New York: Elsevier Limited. Cieza, A. (2002). Linking health-status measurements to the International Classification of Functioning, Disability and Health. Journal of Rehabilitation Medicine, 34(5), 205-210.  Cieza, A. (2005a). Content comparison of health-related quality of life (HRQOL) instruments based on the International Classification of Functioning, Disability and Health (ICF). Quality of Life Research, 14(5), 1225-1237.  Cieza, A. (2005b). ICF linking rules: An update based on lessons learned. Journal of Rehabilitation Medicine, 37(4), 212-218.  Claassen, A. A. O. M., Gorter, J. W., Stewart, D., Verschuren, O., Galuppi, B. E., & Shimmell, L. J. (2011). Becoming and staying physically active in adolescents with cerebral palsy: Protocol of a qualitative study of facilitators and barriers to physical activity. BMC Pediatrics, 11, 1-9. Coenen, M., Stamm, T. A., Stucki, G., & Cieza, A. (2012). Individual interviews and focus groups in patients with rheumatoid arthritis: A comparison of two qualitative methods. Quality of Life Research, 21(2), 359-370.   Cohen, J. (1960). A coefficient of agreement for nominal scales. Educational and Psychological Measurement, 20:37–46.  152  Coster, W., Bedell, G., Law, M., Khetani, M. A., Teplicky, R., Liljenquist, K., et al. (2011). Psychometric evaluation of the participation and environment measure for children and youth. Developmental Medicine and Child Neurology, 53(11), 1030-1037.  Dallmeijer, A. J., Scholtes, V. A., Becher, J., & Roorda, L. D. (2011). Measuring mobility limitations in children with cerebral palsy: Rasch model fit of a mobility questionnaire, MobQues28. Archives of Physical Medicine & Rehabilitation, 92(4), 640-645.   Daltroy, L. H., Liang, M. H., Fossel, A. H., & Goldberg, M. J. (1998). The POSNA pediatric musculoskeletal functional health questionnaire: Report on reliability, validity, and sensitivity to change. Journal of Pediatric Orthopaedics, 18(5), 561-571.  Danermark, B., Cieza, A., Gange, J., Gimigliano, F., Granberg, S., Hickson, L., et al. (2010). International Classification of Functioning, Disability, and Health Core Sets for hearing loss: A discussion paper and invitation. International Journal of Audiology, 49(4), 256-262.  Darrah, J. (2008). Using the ICF as a framework for clinical decision making in pediatric physical therapy. Advances in Physiotherapy, 10(3), 146-151.  Davis, E., Shelly, A., Waters, E., Boyd, R., Cook, K., & Reddihough, D. (2010). The impact of caring for a child with cerebral palsy: Quality of life for mothers and fathers. Child: Care, Health and Development, 36 (1), 63-73.  Davis, E., Waters, E., Mackinnon, A., Reddihough, D., Graham, H. K., Mehmet-Radji, O., et al. (2006). Paediatric quality of life instruments: A review of the impact of the conceptual framework on outcomes. Developmental Medicine and Child Neurology, 48(4), 311-318.  Dekker, J. (1995). Application of the ICIDH in survey research on rehabilitation: The emergence of the functional diagnosis. Disability and Rehabilitation, 17(3-4), 195-201.  153  DeMatteo, C., Law, M., Russell, D., Pollock, N., Rosenbaum, P., & Walter, S. (1992). QUEST: Quality of Upper Extremity Skills Test. Hamilton, ON: McMaster University, Neurodevelopmental Clinical Research Unit. Dickinson, H. O., Parkinson, K. N., Ravens-Sieberer, U., Schirripa, G., Thyen, U., Arnaud, C., et al. (2007). Self-reported quality of life of 8-12-year-old children with cerebral palsy: A cross-sectional European study. Lancet, 369(9580), 2171-2178.   Dunn, N., Shields, N., Taylor, N. F., & Dodd, K. J. (2009). Comparing the self concept of children with cerebral palsy to the perceptions of their parents. Disability & Rehabilitation, 31(5), 387-393.  Eliasson, A., Krumlinde-Sundholm, L., Rosblad, B., Beckung, E., Arner, M., Ohrvall, A., et al. (2006). The Manual Ability Classification System (MACS) for children with cerebral palsy: Scale development and evidence of validity and reliability. Developmental Medicine and Child Neurology, 48(7), 549-554.  Elkamil, A. I., Andersen, G. L., Hagglund, G., Lamvik, T., Skranes, J., & Vik, T. (2011). Prevalence of hip dislocation among children with cerebral palsy in regions with and without a surveillance programme: A cross sectional study in Sweden and Norway. BMC Musculoskeletal Disorders, 12, 284-291.  Engel, G. L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196(4286), 129-136.  Escorpizo, R., Cieza, A., Beaton, D., & Boonen, A. (2009). Content comparison of worker productivity questionnaires in arthritis and musculoskeletal conditions using the International Classification of Functioning, Disability, and Health framework. Journal of Occupational Rehabilitation, 19(4), 382-397.  154  Escorpizo, R., Finger, M. E., Glassel, A., & Cieza, A. (2011a). An international expert survey on functioning in vocational rehabilitation using the International Classification of Functioning, Disability and Health. Journal of Occupational Rehabilitation, 21(2), 147-155.  Escorpizo, R., Finger, M. E., Glassel, A., Gradinger, F., Luckenkemper, M., & Cieza, A. (2011). A systematic review of functioning in vocational rehabilitation using the International Classification of Functioning, Disability and Health. Journal of Occupational Rehabilitation, 21(2), 134-146.  Eunson, P. (2012). Aetiology and epidemiology of cerebral palsy. Paediatrics and Child Health (United Kingdom), 22(9), 361-366.  Fava, L., Muehlan, H., & Bullinger, M. (2009). Linking the DISABKIDS modules for health-related quality of life assessment with the International Classification of Functioning, Disability and Health (ICF). Disability and Rehabilitation, 31(23), 1943-1954.  Fayed, N., Schiariti, V., Bostan, C., Cieza, A., & Klassen, A. (2011). Health status and QOL instruments used in childhood cancer research: Deciphering conceptual content using  World Health Organization definitions. Quality of Life Research, 20(8), 1247-1258.   Fayed, N., Klassen, A., & Schiariti, V. (2012). Health Status Instruments. In A. Majnemer, Measures for Children with Developmental Disabilities: An ICF-CY approach. (pp. 487-502). London: Mac Keith Press. Fehlings, D., Narayanan, U., Andersen, J., Beauchamp, R., Gorter, J. W., Kawamura, A., et al. (2012). Botulinum toxin-a use in paediatric hypertonia: Canadian practice patterns. Canadian Journal of Neurological Sciences, 39(4), 508-515.  Finger, M. E., Glassel, A., Erhart, P., Gradinger, F., Klipstein, A., Rivier, G., et al. (2011). Identification of relevant ICF categories in vocational rehabilitation: A cross sectional study 155  evaluating the clinical perspective. Journal of Occupational Rehabilitation, 21(2), 156-166. doi:http://dx.doi.org/10.1007/s10926-011-9308-2 Garin, O., Ayuso-Mateos, J. L., Almansa, J., Nieto, M., Chatterji, S., Vilagut, G., et al. (2010). Validation of the "World Health Organization Disability Assessment Schedule, WHODAS-2" in patients with chronic diseases. Health and Quality of Life Outcomes, 8, 51-66.  Geyh, S., Cieza, A., Kollerits, B., Grimby, G., & Stucki, G. (2007). Content comparison of health-related quality of life measures used in stroke based on the International Classification of Functioning, Disability and Health (ICF): A systematic review. Quality of Life Research : An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 16(5), 833-851.  Geyh, S., Peter, C., Muller, R., Bickenbach, J. E., Kostanjsek, N., Ustun, B. T., et al. (2011). The personal factors of the International Classification of Functioning, Disability and Health in the literature - a systematic review and content analysis. Disability & Rehabilitation, 33(13-14), 1089-1102.   Glassel, A., Finger, M. E., Cieza, A., Treitler, C., Coenen, M., & Escorpizo, R. (2011). Vocational rehabilitation from the client's perspective using the International Classification of Functioning, Disability and Health (ICF) as a reference. Journal of Occupational Rehabilitation, 21(2), 167-178.  Glassel, A., Rauch, A., Selb, M., Emmenegger, K., Luckenkemper, M., & Escorpizo, R. (2012). A case study on the application of International Classification of Functioning, Disability and Health (ICF)-based tools for vocational rehabilitation in spinal cord injury. Work , 41(4), 465-474.  156  Gradinger, F., Boldt, C., Hogl, B., & Cieza, A. (2011). Part 2. Identification of problems in functioning of persons with sleep disorders from the health professional perspective using the International Classification of Functioning, Disability and Health (ICF) as a reference: A worldwide expert survey. Sleep Medicine, 12(1), 97-101.   Gradinger, F., Glassel, A., Bentley, A., & Stucki, A. (2011). Content comparison of 115 health status measures in sleep medicine using the International Classification of Functioning, Disability and Health (ICF) as a reference. Sleep Medicine Reviews, 15(1), 33-40.   Granlund, M., Arvidsson, P., Niia, A., Bjorck-Akesson, E., Simeonsson, R., Maxwell, G., et al. (2012). Differentiating activity and participation of children and youth with disability in Sweden: A third qualifier in the International Classification of Functioning, Disability, and Health for children and youth?. American Journal of Physical Medicine & Rehabilitation, 91(13)Suppl 1, S84-96. Grill, E., Bronstein, A., Furman, J., Zee, D. S., & Muller, M. (2012). International Classification of Functioning, Disability and Health (ICF) Core Set for patients with vertigo, dizziness and balance disorders. Journal of Vestibular Research: Equilibrium and Orientation, 22(5-6), 261-271.  Hagberg, B., Hagberg, G., Olow, I., & van Wendt, L. (1996). The changing panorama of cerebral palsy in Sweden. VII. prevalence and origin in the birth year period 1987-90. Acta Paediatrica, 85(8), 954-960.  Hanna, S. E., Bartlett, D. J., Rivard, L. M., & Russell, D. J. (2008). Reference curves for the Gross Motor Function Measure: Percentiles for clinical description and tracking over time among children with cerebral palsy. Physical Therapy, 88(5), 596-607.  157  Hanna, S. E., Law, M. C., Rosenbaum, P. L., King, G. A., Walter, S. D., Pollock, N., et al. (2003). Development of hand function among children with cerebral palsy: Growth curve analysis for ages 16 to 70 months. Developmental Medicine and Child Neurology, 45(7), 448-455.  Hanna, S. E., Rosenbaum, P. L., Bartlett, D. J., Palisano, R. J., Walter, S. D., Avery, L., et al. (2009). Stability and decline in gross motor function among children and youth with cerebral palsy aged 2 to 21 years. Developmental Medicine and Child Neurology, 51(4), 295-302.  Harvey, A., Robin, J., Morris, M. E., Graham, H. K., & Baker, R. (2008). A systematic review of measures of activity limitation for children with cerebral palsy. Developmental Medicine and Child Neurology, 50(3), 190-198.  Hayley, S.,Coster W. J., Ludlow L. H., Haltiwanger J. T., Andrellos P. J. (1992). Pediatric Evaluation of Disability Inventory (PEDI) development, standardization and administration manual. Boston: PEDI Research Group, New England Medical Center Hospitals.  Hidecker, M. J. C., Ho, N. T., Dodge, N., Hurvitz, E. A., Slaughter, J., Workinger, M. S., et al. (2012). Inter-relationships of functional status in cerebral palsy: Analyzing gross motor function, manual ability, and communication function classification systems in children. Developmental Medicine and Child Neurology, 54(8), 737-742.  Hidecker, M. J. C., Paneth, N., Rosenbaum, P. L., Kent, R. D., Lillie, J., Eulenberg, J. B., et al. (2011). Developing and validating the communication function classification system for individuals with cerebral palsy. Developmental Medicine and Child Neurology, 53(8), 704-710.  158  Himmelmann, K., Beckung, E., Hagberg, G., & Uvebrant, P. (2006). Gross and fine motor function and accompanying impairments in cerebral palsy. Developmental Medicine and Child Neurology, 48(6), 417-423.  Himmelmann, K., Hagberg, G., & Uvebrant, P. (2010). The changing panorama of cerebral palsy in Sweden. X. prevalence and origin in the birth-year period 1999-2002. Acta Paediatrica, International Journal of Paediatrics, 99(9), 1337-1343.  Hollenweger, J. (2010). MHADIE's matrix to analyse the functioning of education systems. Disability and Rehabilitation, 32 Suppl 1, S116-124. Huber, E. O., Tobler, A., Gloor-Juzi, T., Grill, E., & Gubler-Gut, B. (2011). The ICF as a way to specify goals and to assess the outcome of physiotherapeutic interventions in the acute hospital. Journal of Rehabilitation Medicine, 43(2), 174-177.  Imms, C., Reilly, S., Carlin, J., & Dodd, K. J. (2009). Characteristics influencing participation of Australian children with cerebral palsy. Disability & Rehabilitation, 31(26), 2204-2215.  Imrie, R. (2004). Demystifying disability: A review of the International Classification of Functioning, Disability and Health. Sociology of Health & Illness, 26(3), 287-305.  Kang, L. J., Palisano, R. J., King, G. A., Chiarello, L. A., Orlin, M. N., & Polansky, M. (2012). Social participation of youths with cerebral palsy differed based on their self-perceived competence as a friend. Child: Care, Health and Development, 38(1), 117-127.  Kang, L. J., Palisano, R. J., Orlin, M. N., Chiarello, L. A., King, G. A., & Polansky, M. (2010). Determinants of social participation--with friends and others who are not family members--for youths with cerebral palsy. Physical Therapy, 90(12), 1743-1757.   159  Kerr, C., McDowell, B. C., Parkes, J., Stevenson, M., & Cosgrove, A. P. (2011). Age-related changes in energy efficiency of gait, activity, and participation in children with cerebral palsy. Developmental Medicine & Child Neurology, 53(1), 61-67.  Ketelaar, M., Kruijsen, A. J. A., Verschuren, O., Jongmans, M. J., Gorter, J. W., Verheijden, J., et al. (2010). LEARN 2 MOVE 2-3: A randomized controlled trial on the efficacy of child-focused intervention and context-focused intervention in preschool children with cerebral palsy. BMC Pediatrics, 10:80. Ketelaar, M., Vermeer, A., Hart, H., van Petegem-van Beek, E., & Helders, P. J. (2001). Effects of a functional therapy program on motor abilities of children with cerebral palsy. Physical Therapy, 81(9), 1534-1545.  Ketelaar, M., Vermeer, A., & Helders, P. J. M. (1998). Functional motor abilities of children with cerebral palsy: A systematic literature review of assessment measures. Clinical Rehabilitation, 12(5), 369-380.  Kiltz, U., van der Heijde, D., Cieza, A., Boonen, A., Stucki, G., Ustun, B., et al. (2011). Developing and validating an index for measuring health in patients with ankylosing spondylitis. Rheumatology, 50(5),894-898.  King, G., Imms, C., Palisano, R., Majnemer, A., Chiarello, L., Orlin, M., et al. (2013). Geographical patterns in the recreation and leisure participation of children and youth with cerebral palsy: A CAPE international collaborative network study. Developmental Neurorehabilitation, 16(3), 196-206.  King, G., Law, M., King, S., Hurley, P., Hanna, S., Kertoy, M., Rosenbaum, P., & Young, N. (2004). Children's Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC). San Antonio, TX: Harcourt Assessment, Inc. 160  Kirchberger, I., Sinnott, A., Charlifue, S., Kovindha, A., Luthi, H., Campbell, R., et al. (2010). Functioning and disability in spinal cord injury from the consumer perspective: An international qualitative study using focus groups and the ICF. Spinal Cord, 48(8), 603-613.   Koman, L. A., Smith, B. P., & Shilt, J. S. (2004). Cerebral palsy. Lancet, 363(9421), 1619-1631.  Kvale, S. (1996). Interviews-an introduction to qualitative research interviewing. Thousand  Oaks, CA: SAGE Publications.  Landgraf, J. M., Maunsell, E., Speechley, K. N., Bullinger, M., Campbell, S., Abetz, L., et al. (1998). Canadian-French, German and UK versions of the Child Health Questionnaire: Methodology and preliminary item scaling results. Quality of Life Research : An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 7(5), 433-445.  Law, M., Baptiste, S., Carswell, A., McColl, M. A., Polatajko, H., & Pollock, N. (1998).  Canadian Occupational Performance Measure (2nd ed.). Toronto: The Canadian Association of Occupational Therapists. Law, M. C., Darrah, J., Pollock, N., Wilson, B., Russell, D. J., Walter, S. D., et al. (2011). Focus on function: A cluster, randomized controlled trial comparing child- versus context-focused intervention for young children with cerebral palsy. Developmental Medicine and Child Neurology, 53(7), 621-629.  Leonardi, M., Chatterji, S., Ayuso-Mateos, J. L., Hollenweger, J., Ustun, B., Kostanjsek, N. F., et al. (2010). Integrating research into policy planning: MHADIE policy recommendations. Disability & Rehabilitation, 32(Suppl 1), S139-47.   Leonardi, M., Sattin, D., Giovannetti, A. M., Pagani, M., Strazzer, S., Villa, F., et al. (2012). Functioning and disability of children and adolescents in a vegetative state and a minimally 161  conscious state: Identification of ICF-CY-relevant categories. International Journal of Rehabilitation, 35(4), 352-359.  Livingston, M. H., Stewart, D., Rosenbaum, P. L., & Russell, D. J. (2011). Exploring issues of participation among adolescents with cerebral palsy: What's important to them?. Physical and Occupational Therapy in Pediatrics, 31(3), 275-287.  Lollar, D. J., & Simeonsson, R. J. (2005). Diagnosis to function: Classification for children and youths. Journal of Developmental and Behavioral Pediatrics, 26(4), 323-330.  Longo, L. D., & Ashwal, S. (1993). William Osler, Sigmund Freud and the evolution of ideas concerning cerebral palsy. Journal of the History of the Neurosciences, 2(4), 255-282.  Maathuis K.G., van der Schans C.P., van Iperen A., Rietman H.S., Geertzen J.H. (2005). Gait in children with cerebral palsy: Observer reliability of Physician Rating Scale and Edinburgh Visual Gait Analysis Interval Testing scale.  Journal of Pediatric Orthopedic.25(3):268-72. Majnemer, A., Shevell, M., Hall, N., Poulin, C., & Law, M. (2010). Developmental and functional abilities in children with cerebral palsy as related to pattern and level of motor function. Journal of Child Neurology, 25(10), 1236-1241.  Majnemer, A., Shevell, M., Law, M., Birnbaum, R., Chilingaryan, G., Rosenbaum, P., et al. (2008). Participation and enjoyment of leisure activities in school-aged children with cerebral palsy. Developmental Medicine and Child Neurology, 50(10), 751-758.  Majnemer, A., Shevell, M., Law, M., Poulin, C., & Rosenbaum, P. (2010). Level of motivation in mastering challenging tasks in children with cerebral palsy. Developmental Medicine and Child Neurology, 52(12), 1120-1126.  162  Majnemer, A., Shikako-Thomas, K., Chokron, N., Law, M., Shevell, M., Chilingaryan, G., et al. (2010). Leisure activity preferences for 6- to 12-year-old children with cerebral palsy. Developmental Medicine and Child Neurology, 52(2), 167-173.  Martinuzzi, A., Carraro, E., Petacchi, E., Pasqualotti, S., & Betto, S. (2012). ICF as a roadmap for planning neurorehabilitation in a paediatric hospital: Follow-up after a 3 years implementation. Developmental Medicine and Child Neurology, 54(Suppl 3), 3-58.  Mâsse, L. C., Miller, A. R., Shen, J., Schiariti, V., & Roxborough, L. (2012). Comparing participation in activities among children with disabilities. Research in Developmental Disabilities, 33(6), 2245-2254.  Mâsse, L. C., Miller, A. R., Shen, J., Schiariti, V., & Roxborough, L. (2013). Patterns of participation across a range of activities among canadian children with neurodevelopmental disorders and disabilities. Developmental Medicine and Child Neurology, 55(8), 729-736.  McCormack, J., Harrison, L. J., McLeod, S., & McAllister, L. (2011). A nationally representative study of the association between communication impairment at 4-5 years and children's life activities at 7-9 years. Journal of Speech, Language, and Hearing Research, 54(5), 1328-1348.  Mesterman, R., Leitner, Y., Yifat, R., Gilutz, G., Levi-Hakeini, O., Bitchonsky, O., et al. (2010). Cerebral palsy-long-term medical, functional, educational, and psychosocial outcomes. Journal of Child Neurology, 25(1), 36-42.  Michelsen, S. I., Flachs, E. M., Uldall, P., Eriksen, E. L., McManus, V., Parkes, J., et al. (2009). Frequency of participation of 8-12-year-old children with cerebral palsy: A multi-centre cross-sectional European study. European Journal of Paediatric Neurology, 13(2), 165-177.   163  Molin, I., & Alricsson, M. (2009). Physical activity and health among adolescents with cerebral palsy in Sweden. International Journal of Adolescent Medicine & Health, 21(4), 623-633.  Morris, C. (2007). Definition and classification of cerebral palsy: A historical perspective. Developmental Medicine and Child Neurology, 49(Suppl109), 3-7.  Morris, C., Kurinczuk, J. J., Fitzpatrick, R., & Rosenbaum, P. L. (2006). Reliability of the Manual Ability Classification System for children with cerebral palsy. Developmental Medicine and Child Neurology, 48(12), 950-953.  Msall, M. E. (2005). Measuring functional skills in preschool children at risk for neurodevelopmental disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 11(3), 263-273.  Murphy, N., Caplin, D. A., Christian, B. J., Luther, B. L., Holobkov, R., & Young, P. C. (2011). The function of parents and their children with cerebral palsy. Pm & R, 3(2), 98-104.  Nelson, K. B., & Ellenberg, J. H. (1978). Epidemiology of cerebral palsy. Advances in Neurology, 19, 421-435.  NeuroDevNet (2012). Cerebral palsy. Retrieved August/03, 2013, from http://www.neurodevnet.ca/research/cp Noreau, L., Lepage, C., Boissiere, L., Picard, R., Fougeyrollas, P., Mathieu, J., et al. (2007). Measuring participation in children with disabilities using the Assessment of Life Habits. Developmental Medicine and Child Neurology, 49(9), 666-671.  Novacheck T.F., Stout J.L., & Tervo R. (2000). Reliability and validity of the Gillette Functional Assessment Questionnaire as an outcome measure in children with walking disabilities. Journal of Pediatric Orthopedic; 20: 75–81. 164  Odding, E., Roebroeck, M. E., & Stam, H. J. (2006). The epidemiology of cerebral palsy: Incidence, impairments and risk factors. Disability and Rehabilitation, 28(4), 183-191.  Ogonowski, J., Kronk, R., Rice, C., & Feldman, H. (2004). Inter-rater reliability in assigning ICF codes to children with disabilities. Disability and Rehabilitation, 26(6), 353-361.  Oskoui, M., Joseph, L., Dagenais, L., & Shevell, M. (2013). Prevalence of cerebral palsy in Quebec: Alternative approaches. Neuroepidemiology, 40(4), 264-268.  Ostensjo, S., Oien, I., & Fallang, B. (2008). Goal-oriented rehabilitation of preschoolers with cerebral palsy a multi-case study of combined use of the Canadian Occupational Performance Measure (COPM) and the Goal Attainment Scaling (GAS). Developmental Neurorehabilitation, 11(4), 252-259.  Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E., & Galuppi, B. (1997). Development and reliability of a system to classify gross motor function in children with cerebral palsy. Developmental Medicine and Child Neurology, 39(4), 214-223.  Palisano, R. J., Cameron, D., Rosenbaum, P. L., Walter, S. D., & Russell, D. (2006). Stability of the Gross Motor Function Classification System. Developmental Medicine and Child Neurology, 48(6), 424-428.  Palisano, R. J., Hanna, S. E., Rosenbaum, P. L., Russell, D. J., Walter, S. D., Wood, E. P., et al. (2000). Validation of a model of gross motor function for children with cerebral palsy. Physical Therapy, 80(10), 974-985.  Palisano, R. J., Orlin, M., Chiarello, L. A., Oeffinger, D., Polansky, M., Maggs, J., et al. (2011). Determinants of intensity of participation in leisure and recreational activities by youth with cerebral palsy. Archives of Physical Medicine & Rehabilitation, 92(9), 1468-1476.   165  Palisano, R. J., Rosenbaum, P., Bartlett, D., & Livingston, M. H. (2008). Content validity of the expanded and revised Gross Motor Function Classification System. Developmental Medicine & Child Neurology, 50(10), 744-750.  Palisano, R. J., Tieman, B. L., Walter, S. D., Bartlett, D. J., Rosenbaum, P. L., Russell, D., et al. (2003). Effect of environmental setting on mobility methods of children with cerebral palsy. Developmental Medicine and Child Neurology, 45(2), 113-120.  Paneth, N., Hong, T., & Korzeniewski, S. (2006). The descriptive epidemiology of cerebral palsy. Clinics in Perinatology, 33(2), 251-267.  Parkes, J., McCullough, N., & Madden, A. (2010). To what extent do children with cerebral palsy participate in everyday life situations?. Health and Social Care in the Community, 18(3), 304-315.  Penner, M., Xie, W. Y., Binepal, N., Switzer, L., & Fehlings, D. (2013). Characteristics of pain in children and youth with cerebral palsy. Pediatrics, 132(2), e407-e413.  Petersson, C., Simeonsson, R. J., Enskar, K., & Huus, K. (2013). Comparing children's self-report instruments for health-related quality of life using the International Classification of Functioning, Disability and Health for children and youth (ICF-CY). Health and Quality of Life Outcomes, 11:75-85. Peyrin-Biroulet, L., Cieza, A., Sandborn, W. J., Coenen, M., Chowers, Y., Hibi, T., et al. (2012). Development of the first disability index for inflammatory bowel disease based on the International Classification of Functioning, Disability and Health. Gut, 61(2), 241-247.  Placek, P. J., Gray, D. B., Hendershot, G. E., Simeonsson, R. J., Kozak, J. F., & Reed, G. M. (2005). International Classification of Functioning, Disability and Health (ICF): 166  Crosscutting breakout session. Neurorehabilitation and Neural Repair, 19(Suppl 1), 61S-63S.  Pless, M., Ibragimova, N., Adolfsson, M., Bjorck-Akesson, E., & Granlund, M. (2009). Evaluation of in-service training in using the ICF and ICF version for children and youth. Journal of Rehabilitation Medicine, 41(6), 451-458.  Post, M. W. M., de Witte, L. P., Reichrath, E., Verdonschot, M. M., Wijlhuizen, G. J., & Perenboom, R. J. M. (2008). Development and validation of impact-s, an ICF-based questionnaire to measure activities and participation. Journal of Rehabilitation Medicine, 40(8), 620-627.  Preamble to the constitution of the world health organization as adopted by the international health conference, New York, 19-22 June, 1946; signed on 22 July 1946 by the representatives of 61 states (official records of the world health organization, no. 2, p. 100) and entered into force on 7 April 1948.  Raina, P., O'Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S. D., Russell, D., et al. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115(6), e626-36.  Ramstad, K., Jahnsen, R., Skjeldal, O. H., & Diseth, T. H. (2012). Parent-reported participation in children with cerebral palsy: The contribution of recurrent musculoskeletal pain and child mental health problems. Developmental Medicine and Child Neurology, 54(9), 829-835.  Rauch, A., Cieza, A., & Stucki, G. (2008). How to apply the International Classification of Functioning, Disability and Health (ICF) for rehabilitation management in clinical practice. European Journal of Physical and Rehabilitation Medicine, 44(3), 329-342.  167  Rauch, A., Escorpizo, R., Riddle, D. L., Eriks-Hoogland, I., Stucki, G., & Cieza, A. (2010). Using a case report of a patient with spinal cord injury to illustrate the application of the International Classification of Functioning, Disability and Health during multidisciplinary patient management. Physical Therapy, 90(7), 1039-1052.  Reilly, S., & Skuse, D. (1992). Characteristics and management of feeding problems of young children with cerebral palsy. Developmental Medicine & Child Neurology, 34(5), 379-388.  Reilly, S., Skuse, D., & Poblete, X. (1996). Prevalence of feeding problems and oral motor dysfunction in children with cerebral palsy: A community survey. Journal of Pediatrics, 129(6), 877-882.  Robertson, C. M. T., Svenson, L. W., & Joffres, M. R. (1998). Prevalence of cerebral palsy in Alberta. Canadian Journal of Neurological Sciences, 25(Suppl 2), 117-122.  Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., Bax, M., Damiano, D., et al. (2007). A report: The definition and classification of cerebral palsy april 2006. Developmental Medicine and Child Neurology. Supplement, 109, 8-14.  Rosenbaum, P., & Rosenbloom, L. (2012). What is cerebral palsy? In H. Hart (Ed.), Cerebral palsy from diagnosis to adult life (pp. 3-13). London: Mac Keith Press. Rosenbaum, P., & Stewart, D. (2004). The World Health Organization International Classification of Functioning, Disability, and Health: A model to guide clinical thinking, practice and research in the field of cerebral palsy. Seminars in Pediatric Neurology, 11(1), 5-10.  Rosenbaum, P. L., Walter, S. D., Hanna, S. E., Palisano, R. J., Russell, D. J., Raina, P., et al. (2002). Prognosis for gross motor function in cerebral palsy: Creation of motor development curves. Journal of the American Medical Association, 288(11), 1357-1363.  168  Rowland, C., Fried-Oken, M., Steiner, S. A., Lollar, D., Phelps, R., Simeonsson, R. J., et al. (2012). Developing the ICF-CY for AAC profile and code set for children who rely on AAC. Augmentative and Alternative Communication, 28(1), 21-32.  Russell, D., Rosembaum P. L., Avery L., Lane M. The Gross Motor Function Measure. GMFM-88 and GMFM-66 (Users’ Manual). Clinics in Developmental Medicine No. 159. London: Mac Keith Press. Russell, D. J., Avery, L. M., Rosenbaum, P. L., Raina, P. S., Walter, S. D., & Palisano, R. J. (2000). Improved scaling of the gross motor function measure for children with cerebral palsy: Evidence of reliability and validity. Physical Therapy, 80(9), 873-885.  Saigal, S. (2000). Perception of health status and quality of life of extremely low-birth weight survivors. the consumer, the provider, and the child. Clinics in Perinatology, 27(2), 403-19. Saigal, S., Rosenbaum, P. L., Feeny, D., Burrows, E., Furlong, W., Stoskopf, B. L., et al. (2000). Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls. Pediatrics, 105(3 Pt 1), 569-574.  Salghetti, A. M., Betto, S., Russo, E., Petacchi, E., Pradal, M., & Martinuzzi, A. (2009). Projecting and programming rehabilitation based on ICF-CY format in a neuropediatric hospital unit. Disability and Rehabilitation, 31(Supp1), S55-S60.  Santoro, A., Lang, M. B. D., Moretti, E., Sellari-Franceschini, S., Orazini, L., Cipriani, P., et al. (2012). A proposed multidisciplinary approach for identifying feeding abnormalities in children with cerebral palsy. Journal of Child Neurology, 27(6), 708-712.  Scheuringer, M., Kirchberger, I., Boldt, C., Eriks-Hoogland, I., Rauch, A., Velstra, I. M., et al. (2010). Identification of problems in individuals with spinal cord injury from the health 169  professional perspective using the ICF: A worldwide expert survey. Spinal Cord, 48(7), 529-536.   Schiariti, V., Klassen, A. F., Cieza, A., Sauve, K., O'Donnell, M., Armstrong, R., et al. (2014a). Comparing contents of outcome measures in cerebral palsy using the International Classification of Functioning (ICF-CY): A systematic review. European Journal of Paediatric Neurology; 18(1):1-12. Schiariti, V., Mâsse, L. C., Cieza, A., Klassen, A. F., Sauve, K., Armstrong, R., et al. (2014b). Towards the development of the International Classification of Functioning Core Sets for children with cerebral palsy: A global expert survey. Journal of Child Neurology, 29(5):582-91.  Schiariti, V., Fayed, N., Cieza, A., Klassen, A., & O'Donnell, M. (2011). Content comparison of health-related quality of life measures for cerebral palsy based on the International Classification of Functioning. Disability & Rehabilitation, 33(15-16), 1330-1339.   Schiariti, V., Sauve, K., Klassen, A.F., Cieza, A., O'Donnell, M., & Mâsse, L.C. (2014). “He does not see himself as being different”: children and caregivers’ perspectives on relevant areas of functioning in cerebral palsy. Developmental Medicine and Child Neurology, http://dx.doi.org/10.1111/dmcn.12472.  Schiariti, V., & Mâsse, L. C. (2014a). Relevant areas of functioning in children with cerebral palsy based on the International Classification of Functioning: A clinical perspective. Journal of Child Neurology, http://dx.doi.org/10.1177/0883073814533005. Schiariti, V., & Mâsse, L. C. (2014b). Relevant areas of functioning in children with cerebral palsy based on the International Classification of Functioning coding system: From whose 170  perspective?. European Journal of Paediatric Neurology, http://dx.doi.org/10.1016/j.ejpn.2014.04.009. Schiariti V., Selb M., Cieza A., & O’Donnell M. (2014). International Classification of Functioning, Disability and Health Core Sets for children and youth with Cerebral Palsy: A consensus meeting. Developmental Medicine and Child Neurology. (in press).  Schonrich, S., Brockow, T., Franke, T., Dembski, R., Resch, K. L., & Cieza, A. (2006). Analyzing the content of outcome measures in clinical trials on irritable bowel syndrome using the International Classification of Functioning, Disability and Health as a reference. Die Rehabilitation, 45(3), 172-180.  Shevell, M., Dagenais, L., & Oskoui, M. (2013). The epidemiology of cerebral palsy: New perspectives from a Canadian registry. Seminars in Pediatric Neurology, 20(2), 60-64.  Shikako-Thomas, K., Lach, L., Majnemer, A., Nimigon, J., Cameron, K., & Shevell, M. (2009). Quality of life from the perspective of adolescents with cerebral palsy: "I just think I'm a normal kid, I just happen to have a disability". Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 18(7), 825-832.  Shikako-Thomas, K., Shevell, M., Schmitz, N., Lach, L., Law, M., Poulin, C., et al. (2013). Determinants of participation in leisure activities among adolescents with cerebral palsy. Research in Developmental Disabilities, 34(9), 2621-2634.  Sigl, T., Cieza, A., van der Heijde, D., & Stucki, G. (2005). ICF based comparison of disease specific instruments measuring physical functional ability in ankylosing spondylitis. Annals of the Rheumatic Diseases, 64(11), 1576-1581.  171  Simeonsson, R. J. (2009). International classification of functioning,   disability and health - version for children and youth (2007) -  plus 2 years. part B [webinar]: Retrieved August/03, 2013, from http://breeze.unc.edu/icfcypartb/.  Simeonsson, R. J. (2010).  Developmental and health assessment in rehabilitation with the International Classification of Functioning, Disability, and Health for children and youth. In E. Mpofu, & T. Oakland (Eds.), Developmental and health assessment in rehabilitation with the ICF for children and youth. (pp. 27-46). New York: Springer. Simeonsson, R. J., Leonardi, M., Lollar, D., Bjorck-Akesson, E., Hollenweger, J., & Martinuzzi, A. (2003). Applying the International Classification of Functioning, Disability and Health (ICF) to measure childhood disability. Disability and Rehabilitation, 25(11-12), 602-610.  Simeonsson, R. J., Scarborough, A. A., & Hebbeler, K. M. (2006). ICF and ICD codes provide a standard language of disability in young children. Journal of Clinical Epidemiology, 59(4), 365-373.  Smith, L., Kelly, K. D., Prkachin, G., & Voaklander, D. C. (2008). The prevalence of cerebral palsy in British Columbia, 1991-1995. Canadian Journal of Neurological Sciences, 35(3), 342-347.  Smits, D., Hanna, S. E., Dallmeijer, A. J., Vos, R. C., van Eck, M., van Schie, P., et al. (2013). Longitudinal development of gross motor function among Dutch children and young adults with cerebral palsy: An investigation of motor growth curves. Developmental Medicine and Child Neurology, 55(4), 378-384.  Sparrow, S.S., Balla, D., and Cicchetti, D.V. 1984. Vineland adaptive behavior scales–Survey Edition. Circle Pines, MN: American Guidance Service.  172  Stahl, Y., Granlund, M., Gare-Andersson, B., & Enskar, K. (2011). Review article: Mapping of children's health and development data on population level using the classification system ICF-CY. Scandinavian Journal of Public Health, 39(1), 51-57.  Stanley, F. J., Blair, E., & Alberman, E. (2000). Cerebral palsies; epidemiology and causal pathways. London: MacKeith press. Statistics Canada, Social and Aboriginal Statistics Division. (2007). Participation and activity limitation survey 2006: Technical and methodological report No. Catalogue no. 89-628-XIE). Ottawa, ON: Ministry of Industry.  Statistics, C. (2013). British Columbia Stastistics. Retrieved 09/08, 2013, from www.bcstats.gov.bc.ca/StatisticsBySubject/Demography/PopulationEstimates.aspx  Stewart, D., Rosenbaum, P., & CanChild Centre for Childhood Disability Research. (2003). The International Classification of Functioning, Disability, and Health (ICF): A global model to guide clinical thinking and practice in childhood disability. Retrieved from CanChild:  http://www.canchild.ca/en/canchildresources/internationalclassificationoffunctioning.asp Stewart, D. A., Lawless, J. J., Shimmell, L. J., Palisano, R. J., Freeman, M., Rosenbaum, P. L., et al. (2012). Social participation of adolescents with cerebral palsy: Trade-offs and choices. Physical and Occupational Therapy in Pediatrics, 32(2), 167-179.  Stucki, A., Cieza, A., Schuurmans, M. M., Ustun, B., Stucki, G., Gradinger, F., et al. (2008). Content comparison of health-related quality of life instruments for obstructive sleep apnea. Sleep Medicine, 9(2), 199-206.  The KIDSCREEN Group Europe. (2006). The KIDSCREEN Questionnaires - Quality of life questionnaires for children and adolescents. Handbook. Lengerich: Pabst Science Publishers.  173  Thomas, C. (2001). Body and society: Some reflections on the concepts of ’Disability’ and 'Impairment’. In N. Watson, & S. Cunningham-Burley (Eds.), Reframing the body (pp. 47-62). Basingstoke, Hampshire: Palgrave. Tieman, B. L., Palisano, R. J., Gracely, E. J., & Rosenbaum, P. L. (2004). Gross motor capability and performance of mobility in children with cerebral palsy: A comparison across home, school, and Outdoors/Community settings. Physical Therapy, 84(5), 419-429.  Tieman, B. L., Palisano, R. J., Gracely, E. J., Rosenbaum, P. L., Chiarello, L. A., & O'Neil, M. E. (2004). Changes in mobility of children with cerebral palsy over time and across environmental settings. Physical and Occupational Therapy in Pediatrics, 24(1-2), 109-128.  Vargus-Adams, J. N., & Martin, L. K. (2009). Measuring what matters in cerebral palsy: A breadth of important domains and outcome measures. Archives of Physical Medicine and Rehabilitation, 90(12), 2089-2095.  Vargus-Adams, J. N., & Martin, L. K. (2011). Domains of importance for parents, medical professionals and youth with cerebral palsy considering treatment outcomes. Child: Care, Health & Development, 37(2), 276-281.  Varni JW, Burwinkle TM, Berrin SJ, Sherman SA, Artavia K, Malcarne VL, Chambers HG. (2006). The PedsQL in pediatric cerebral palsy: Reliability, validity, and sensitivity of the generic core scales and cerebral palsy module. Developmental Medicine and Child Neurology, 48 (6):442-9. Velstra, I. M., Ballert, C. S., & Cieza, A. (2011). A systematic literature review of outcome measures for upper extremity function using the International Classification of Functioning, Disability, and Health as reference. Physical Medicine & Rehabilitation, 3(9), 846-860.   174  Verschuren, O., Bloemen, M., Kruitwagen, C., & Takken, T. (2010). Reference values for aerobic fitness in children, adolescents, and young adults who have cerebral palsy and are ambulatory. Physical Therapy, 90(8), 1148-1156.  Verschuren, O., Wiart, L., Hermans, D., & Ketelaar, M. (2012). Identification of facilitators and barriers to physical activity in children and adolescents with cerebral palsy. Journal of Pediatrics, 161(3), 488-494.  Ware J.E., Kosinski M., & Keller S.D. (1996). A 12-Item Short-Form Health Survey: Construction of scales and preliminary tests of reliability and validity. Medical Care; 34 (3):220-233.  Waters, E., Davis, E., Ronen, G. M., Rosenbaum, P., Livingston, M., & Saigal, S. (2009). Quality of life instruments for children and adolescents with neurodisabilities: How to choose the appropriate instrument. Developmental Medicine and Child Neurology, 51(8), 660-669.  Waters, E., Maher, E., Salmon, L., Reddihough, D., & Boyd, R. (2005). Development of a condition-specific measure of quality of life for children with cerebral palsy: Empirical thematic data reported by parents and children. Child: Care, Health and Development, 31(2), 127-135.  White-Koning, M., Arnaud, C., Dickinson, H. O., Thyen, U., Beckung, E., Fauconnier, J., et al. (2007). Determinants of child-parent agreement in quality-of-life reports: A European study of children with cerebral palsy. Pediatrics, 120(4), e804-e814.  Wichers, M., Hilberink, S., Roebroeck, M. E., van Nieuwenhuizen, O., & Stam, H. J. (2009). Motor impairments and activity limitations in children with spastic cerebral palsy: A Dutch population-based study. Journal of Rehabilitation Medicine, 41(5), 367-374.  175  World Health Organization. (1980). International Classification of Impairments, Disabilities, and Handicaps. Geneva: World Health Organization.  World Health Organization. (2001). International Classification of Functioning, Disability and Health: ICF. Geneva: World Health Organization World Health Organization. (2007). International Classification of Functioning, Disability and Health: Children & youth version. Geneva: World Health Organization Wright, F. V., Rosenbaum, P. L., Goldsmith, C. H., Law, M., & Fehlings, D. L. (2008). How do changes in body functions and structures, activity, and participation relate in children with cerebral palsy?. Developmental Medicine and Child Neurology, 50(4), 283-289.                176  Appendices Appendix A  Systematic Review Search Strategies This appendix includes the search strategies applied in the following search databases: CINAHL, MEDLINE, PsycINFO, Central and Embase.    CINAHL S42  S40 and S41  S41  DT 1998-2012  S40  S30 and S39 S39  (S31 or S32 or S33 or S34 or S35 or S36 or S37 or S38)  S38  (MH "Qualitative Studies+")  S37  (MH "Epidemiological Research")  S36  (MH "Cross Sectional Studies")  S35  (MH "Case Control Studies")  S34  (MH "Prospective Studies+")  S33  (MH "Comparative Studies")  S32  TI random* or AB random* or TI control* or AB control* or TI intervention*  or AB intervention* or TI evaluat* or AB evaluat*  S31  (MH "Clinical Trials+")  S30  (S19 and S29)  S29  (S20 or S21 or S22 or S23 or S24 or S25 or S26 or S27 or S28)  S28  TI school* or AB school* or TI kindergar* or AB kindergar*  S27  TI pediatric* or AB pediatric* or TI paediatric* or AB paediatric*  S26  (MH "Pediatrics")  S25  (MH "Puberty+")  S24  TI minors or AB minors or TI pubert* or AB pubert* or TI prepubesc*  or AB prepubesc* and TI pubesc* and AB pubesc*  S23  ( TI adolesc* or TI adolesc* or TI teen* or TI teen* or TI boy* or TI boy*   or TI girl* or TI girl* ) or ( AB adolesc* or AB adolesc* or AB teen*   or AB teen* or AB boy* or AB boy* or AB girl* or AB girl* )  S22  (MH "Adolescence+")  S21  (TI child* or TI schoolchild* or TI school age* or TI preschool* or TI kid* or TI toddler*)          or (AB child* or AB schoolchild* or AB school age* or AB preschool* or AB kid* or AB toddler*)  S20  (MH "Child+")  S19  S3 and S10 and S18  S18  S11 or S12 or S13 or S14 or S15 or S16 or S17  S17  (TI scale* n2 rating or TI scale* n2 tone or TI scale* n2 strength or TI scale* n2 motion or         TI scale* n2 ashworth or TI scale* n2 tardiu or TI scale* n2 marsden or TI scale* n2 dystonia)         or (AB scale* n2 rating or AB scale* n2 tone or AB scale* n2 strength or AB scale* n2 motion or          AB scale* n2 ashworth or AB scale* n2 tardiu or AB scale* n2 marsden or AB scale* n2 dystonia)  177    CINAHL S16  ( TI function* n2 assessment* or TI function* n2 global or TI function* n2 independence          or TI function* n2 health or TI function* n2 motor or TI function* n2 skills) or          (AB function* n2 assessment* or AB function* n2 global or AB function* n2 independence or          AB function* n2 health or AB function* n2 motor or AB function* n2 skills )  S15  TI level* n2 health or AB level* n2 health or TI status n2 health or AB status n2 health  S14  (MM "Health Status Indicators")  S13  (MM "Health Status+")  S12  (MM "Outcomes (Health Care)+")  S11  (MM "Quality of Life")  S10  (S4 or S5 or S6 or S7 or S8 or S9)  S9  TI performance test* or AB performance test*  S8  (TI measure* or TI survey* or TI instrument*) or (AB measure* or AB survey* or AB instrument*)   S7  (MM "Surveys+")  S6 TI questionnaire* or AB questionnaire*   S5 MJ Questionnaires      S4 DE Data Collection      S3 (S1 or S2)     S2 TI Cerebral Pals* or AB  Cerebral S1 MJ Cerebral Palsy      S; Search  MEDLINE 1   *Cerebral Palsy/rh, th                 2   cerebral pals$.tw.                  3   1 or 2                 4   *Data Collection/                  5   *Questionnaires/                   6   questionnaire?.tw.                   7   survey$.tw.                   8   or/4-7                   9   *"Quality of Life"/                 10   exp *"Outcome Assessment (Health Care)"/               11   *Health Status/                  12   ((level? or status) adj2 health).tw.               13   (function$ adj2 (assessment or global  or independence or health or or skills)).tw.       14   (scale? adj2 (rating or tone  or strength or motion or or tardiu or marsden or dystonia)).tw.   15   or/9-14                   16   3 and 8 and 15               17   exp child/                  18   (child$ or schoolchild$ or school  age$ or preschool$ or kid kids or toddler$).mp.      19   exp adolescent/                  20   adoles$.tw.                   21   (teen$ or boy$ or girl$).mp.               22   exp minors/                  23   minors$.mp.                   178   MEDLINE 24   exp puberty/                  25   (pubert$ or pubescen$ or prepubescen$).mp.               26   exp pediatrics/                  27   (pediatric$ or paediatric$).mp.                 28   exp schools/                  29   (nursery school$ or kindergar$ or  primary school$ or secondary school$ elementary school$ or high school$ or  highschool$).mp. 30   or/17-29                   31   exp adolescent/ and exp adult/               32   or/17-18,20-29                   33   31 not 32                 34   30 not 33                 35   16 and 34                 36   randomized controlled trial.pt.                 37   controlled clinical trial.pt.                 38   random$.tw.                   39   intervention$.tw.                   40   evaluat$.tw.                   41   control$.tw.                   42   exp case-control studies/                 43   case control$.tw.                  44   exp cohort studies/                 45   cohort$.tw.                   46   cross-sectional studies/                  47   cross-sectional analys$.tw.                  48   prevalence stud$.tw.                  49   epidemiologic methods/                  50   qualitative stud$.tw.                  51   or/36-50                     PsycINFO S48 S46 and S47     S47 DT 1998-2012      S46 ((S35 or S36 or S37  or S45 (S35 or S36 or S37  or S44 AB epidemiologic* design* or AB  epidemiologic* S43 TI epidemiologic* design* or TI  epidemiologic* S42 DE Quasi Experimental Methods      S41 DE Qualitative Research      S40 TI prevalence stud* or AB  prevalence S39 AB cross-sectional stud* or AB  cross-sectional S38 TI cross-sectional stud* or TI  cross-sectional S37 TI cohort* or AB cohort*   S36 DE Cohort Analysis 677     S35 TI random* or AB random*  or  AB intervention* or TI evaluat*  or 179   PsycINFO S34 S21 and S33 168    S33 S22 or S23 or S24  or S32 TI school* or AB school*  or S31 TI pediatric* or AB pediatric*  or S30 DE Pediatrics 6210     S29 TI minors or AB minors  or  or AB prepubesc* and TI  pubesc* S28 TI adolesc* or TI adolesc*  or  or TI boy* or TI  girl* S27 AB adolesc* or AB adolesc*  or  or AB boy* or AB  girl* S26 AB child* or AB schoolchild*  or  or AB kid* or AB  toddler* S25 TI child* or TI schoolchild*  or S24 AG adolescence      S23 AG school age     S22 DE Preschool Students      S21 S3 and S10 and S20   S20 S11 or S12 or S13  or S19 TI scale* n2 rating or  TI  TI scale* n2 ashworth or  TI S18 AB scale* n2 rating or  AB  AB scale* n2 ashworth or  AB S17 AB function* n2 assessment* or  AB  or AB function* n2 health  or S16 TI function* n2 assessment* or  TI  or TI function* n2 health  or S15 TI level* n2 health or  AB S14 Wellbeing       S13 DE Psychotherapeutic Outcomes      S12 DE Treatment Outcomes      S11 DE Quality of Life      S10 S4 or S5 or S6  or S9 TI performance test* or AB  performance S8 AB measure* or AB survey*  or S7 TI measure* or TI survey*  or S6 TI questionnaire* or AB questionnaire*   S5 MJ Questionnaires      S4 DE Data Collection      S3 (S1 or S2)     S2 TI Cerebral Pals* or AB  Cerebral S1 MJ Cerebral Palsy      S; search  CENTRAL 1 *Cerebral Palsy/rh, th     180   CENTRAL 2 cerebral pals$.tw.      3 1 or 2     4 Data Collection/      5 Questionnaires/       6 questionnaire?.tw.       7 survey$.tw.       8 or/4-7       9 *"Quality of Life"/     10 exp Outcome Assessment (Health Care)/      11 Health Status/      12 ((level? or status) adj2 health).tw.   13 (function$ adj2 (assessment or global   14 (scale? adj2 (rating or tone   15 or/9-14       16 3 and 8 and 15   17 exp child/      18 (child$ or schoolchild$ or school   19 exp adolescent/      20 adoles$.tw.       21 (teen$ or boy$ or girl$).mp.   22 exp minors/      23 minors$.mp.       24 exp puberty/      25 (pubert$ or pubescen$ or prepubescen$).mp.   26 exp pediatrics/      27 (pediatric$ or paediatric$).mp.     28 exp schools/      29 (nursery school$ or kindergar$ or   30 or/17-29 -91468      31 exp adolescent/ and exp adult/   32 or/17-18,20-29 -53668      33 31 not 32     34 30 not 33     35 16 and 34       EMBASE 1 *Cerebral Palsy/rh, th     2 cerebral pals$.tw.      3 1 or 2     4 Information Processing/      5 exp *Questionnaire/      6 questionnaire?.mp.       7 survey$.tw.       8 or/4-7       9 exp *"Quality of Life"/    10 *Outcome Assessment/      181   EMBASE 11 exp *Health Status/     12 ((level? or status) adj2 (function$   13 (function$ adj2 (assessment or global   14 (scale? adj2 (rating or tone   15 or/9-14       16 3 and 8 and 15   17 exp child/      18 (child$ or schoolchild$ or school   19 exp adolescent/      20 adoles$.tw.       21 (teen$ or boy$ or girl$).mp.   22 exp minors/      23 minors$.mp.       24 exp puberty/      25 (pubert$ or pubescen$ or prepubescen$).mp.   26 exp pediatrics/      27 (pediatric$ or paediatric$).mp.     28 exp schools/      29 (nursery school$ or kindergar$ or   30 or/17-29       31 exp adolescent/ and exp adult/   32 or/17-18,20-29       33 31 not 32     34 30 not 33     35 16 and 34     36 randomized controlled trial/     37 controlled clinical trial/     38 random$.tw.       39 intervention$.tw.       40 evaluat$.tw.       41 control$.tw.       42 exp case control study/    43 cohort analysis/      44 cohort$.tw.       45 cross-sectional study/      46 (cross-sectional adj (stud$ or analys$)).tw.   47 exp prevalence/      48 prevalence stud$.tw.      49 epidemiologic methods/      50 qualitative research/      51 qualitative stud$.tw.      52 or/36-51       53 35 and 52       182  Appendix B  List of International and National Associations by WHO regions This appendix provides the list of all international and national associations that were contacted to recruit participants for the expert survey study, including disability-related associations and Cerebral Palsy and pediatric related associations.   Institution Name Country   WHO region  Disability related   1 ASSOCIACAO NACIONAL DE DEFICIENTES ANGOLANOS (ANDA) Angola African Region 2 UNION NATIONALE DES ASSOCIATIONS ET INSTITUTIONS DE ET POUR PERSONNES HANDICAPEES DU CAMEROUN (UNAPHAC) Cameroon African Region 3 UNION DES ASSOCIATION DES PERSONNES HANDICAPÉES DU TCHAD  Chad African Region 4 CENTRE INTERCOMMUNAUTAIRE CONGOLAIS POUR LES PERSONNES AVEC HANDICAP - CICPH Congo African Region 5 FÉDÉRATION DES ASSOCIATIONS DES HANDICAPÉS DE COTE D’IVOIRE (FAHCI) Côte d'Ivoire African Region 6 ETHIOPIAN FEDERATION OF PEOPLE WITH DISABILITIES Ethiopia African Region 7 HANDICAP SANS FRONTIÈRES - ASSOC. NAT. DES PERSONNES HANDICAPEES DU GABON Gabon African Region 8 GHANA FEDERATION OF THE DISABLED (GFD) Ghana African Region 9 FEDERATION GUINEENNE POUR LA PROMOTION DES ASSOCIATIONS DE ET POUR PERSONNES HANDICAPEES (FEGUIPAH) Guinea African Region 10 UNITED DISABLED PERSONS OF KENYA (UDPK) Kenya African Region 11 COLLECTIF DES ORGANISATIONS OEUVRANT POUR LES PERSONNES HANDICAPÉES (COPH) Madagascar African Region 12 FEDERATION OF DISABILITY ORGANIZATIONS OF MALAWI (FEDOMA) Malawi African Region 13 FEDERATION MALIENNE DES ASSOCIATIONS DE HANDICAPES Mali African Region 183   Institution Name Country   WHO region 14 FÉDÉRATION MAURITANIENNE DES ASSOCIATIONS NATIONALES DES PERSONNES HANDICAPÉES (FEMANPH Mauritania African Region 15 FEDERATION OF DISABLED PERSONS' ORGANIZATIONS MAURITIUS Mauritius African Region 16 FORUM DAS ASSOCIAÇÖES MOÇAMBICENAS DOS DEFICIENTES (FAMOD) Mozambique African Region 17 NATIONAL FEDERATION OF PEOPLE WITH DISABILITIES IN NAMIBIA (NFPDN) Namibia African Region 18 FÉDÉRATION NIGERIENNE DES PERSONNES HANDICAPÉES (FNPH) Niger African Region 19 JOINT NATIONAL ASSOCIATION OF PERSON WITH DISSABILITIES (JONAPWD Nigeria African Region 20 UNION CENTRAFRICAINE DE LA FRATERNITE CRETIENNE DES MALADES ET DES HANDICAPES PHYSIQUES Republique Centrafricaine African Region 21 ASSOCIATION GÉNÉRALE DES HANDICAPÉS DU RWANDA (AGHR) Rwanda African Region 22 DISABLED PEOPLE ASSOCIATION Senegal African Region 23 SEYCHELLES DISABLED PEOPLE'S ORGANIZATION (SDPO) Seychelles African Region 24 DISABILITY AWARENESS ACTION GROUP Sierra Leone African Region 25 DISABLED PEOPLE SOUTH AFRICA (DPSA) South Africa African Region 26 FEDERATION OF THE DISABLED IN SWAZILAND (FODSWA) Swaziland African Region 27 ZANZIBAR ASSOCIATION OF THE DISABLED (UWZ) Tanzania African Region 28 FEDERATION TOGOLAISE DES ASSOCIATIONS DES PERSONNES HANDICAPEES Togo African Region 29 NATIONAL UNION OF DISABLED PERSONS OF UGANDA (NUDIPU) Uganda African Region 30 ZAMBIA FEDERATION OF THE DISABLED (ZAFOD Zambia African Region 184   Institution Name Country   WHO region 31 FEDERATION OF ORGANISATIONS OF DISABLED PEOPLE IN ZIMBABWE (FODPEZ) Zimbabwe African Region 32 LEBANESE COUNCIL OF DISABLED PEOPLE (LCDP) Lebanon Eastern Mediterranean Region 33 AMICALE MAROCAINE DES HANDICAPÉS (AMH) Morocco Eastern Mediterranean Region 34 DISABLED PEOPLES' INTERNATIONAL - PAKISTAN Pakistan  Eastern Mediterranean Region 35 SOMALI DISABLED PEOPLE COUNCIL Somalia Eastern Mediterranean Region 36 UNION NATIONALE DES AVEUGLES DE TUNISI Tunisia Eastern Mediterranean Region 37 ALBANIA DISABILITY FORUM (ADF) Albania European Region 38 FOR INTERNATIONAL COOPERATION OF DISABLED PEOPLE OF AZERBAIJAN Azerbaijan European Region 39 BELARUSSIAN SOCIETY OF THE HANDICAPPED Belarus European Region 40 KVG - KATHOLIEKE VERENIGING GEHANDICAPTEN Belgium European Region 41 UNION OF DISABLED PEOPLE IN BULGARIA Bulgaria European Region 42 CROATIA UNION OF ASSOCIATIONS OF PEOPLE WITH DISABLIES Croatia European Region 43 CZECH NATIONAL DISABILITY COUNCIL (CNDC) Czech Republic European Region 44 INDEPENDENT LIVING ESTONIA Estonia European Region 45 DPI FINLAND (PIHNALA, KOSONEN) C/O INVALIDILIITTO Finland European Region 46 GROUPEMENT DES PERSONNES HANDICAPÉES (GFPH) France European Region 47 ISL E.V. (INTERESSENVERTRETUNG SELBSTBESTIMMT LEVEN DEUTSCHLAND, E.V Germany European Region 185   Institution Name Country   WHO region 48 PARAPLEGICS ASSOCIATION OF GREECE Greece European Region 49 NATIONAL FEDERATION OF DISABLED PERSONS' ASSOCIATIONS (MEOSZ) Hungary European Region 50 THE ORGANISATION OF DISABLED IN ICELAND (OBI) Iceland European Region 51 IRISH WHEELCHAIR ASSOCIATION Ireland European Region 52 DPI ITALIA Italy European Region 53 THE LATVIA UMBRELLA BODY FOR DISABILITY ORGANIZATIONS - SUSTENTO Latvia European Region 54 POLIO PLUS ORGANIZATION Macedonia European Region 55 FFO - FUNKSJONSHEMMEDES FELLESORGANISASJON - NORWEGIAN FEDERATION OF ORGANISATIONS OF DISABLED PEOPLE Norway European Region 56 ASSOCIAÇÃO PORTUGUESA DE DEFICIENTES Portugal European Region 57 THE NATIONAL ORGANIZATION OF DISABLED PEOPLE IN ROMANIA (ONPHR) Romania European Region 58 ALL RUSSIAN SOCIETY OF DISABLED PEOPLE Russia European Region 59 NATIONAL ORGANIZATION OF PERSONS WITH DISABILITIES OF SERBIA Serbia European Region 60 ALLIANCE OF ORGANIZATIONS OF DISABLED PEOPLE SLOVAKIA (AOZPO) Slovakia European Region 61 ASSOCIATION FOR THE THEORY AND CULTURE OF HANDICAP YHD Slovenia European Region 62 CONFEDERACION COORDINADORA ESTATAL DE MINUSVALIDOS FISICOS DE ESPANA (COCEMFE) Spain European Region 63 AGILE - BEHINDERTEN SELBSTHILFE SCHWEIZ Switzerland European Region 64 DISABLEDS' EDUCATION AND SOLIDARITY FOUNDATION OF TURKEY DESF Turkey European Region 186   Institution Name Country   WHO region 65 UNITED KINGDOM’S DISABLED PEOPLE’S COUNCIL (UKDPC) UK European Region 66 DISABLED PEOPLES INTERNATIONAL KHARKOV-UKRAINE Ukraine European Region 67 ANTIGUA & BARBUDA ASSOCIATION OF PERSONS WITH DISABILITIES (ABAPD) Antigua and Barbuda Region of the Americas 68 ENTE NACIONAL COORDINADOR DE INSTITUCIONES DE DISCAPACITADOS (ENCIDIS) Argentina Region of the Americas 69 BARBADOS NATIONAL ORGANIZATION OF THE DISABLED (BARNOD) Barbados Region of the Americas 70 THE BELIZEAN ASSEMBLY OF AND FOR PERSONS WITH DISABLILITY Belize Region of the Americas 71 CONFEDERACIÓN BOLIVIANA DE LA PERSONA CON DISCAPACIDAD (COBOPDI) Bolivia Region of the Americas 72 ASOCIACIÓN NACIONAL DE PERSONAS DISCAPACITADAS (ANDDI - DPI CHILE) Chile Region of the Americas 73 ASOCIACIÓN COLOMBIANA DE PERSONAS CON LIMITACIÓN (ACOPIM) Colombia Region of the Americas 74 FEDERACIÓN COSTARRICENSE DE ORGANIZACIONES DE PERSONAS CON DISCAPACIDAD Costa Rica Region of the Americas 75 ASOCIACIÓN CUBANA DE LIMITADOS FÍSICOS MOTORES (ACLIFIM) Cuba Region of the Americas 76 DOMINICA ASSOCIATION OF DISABLED PEOPLE (DADP) Dominica Region of the Americas 77 FEDERACIÓN NACIONAL DE DISCAPACITADOS DOMINICANOS (FENADID) Dominican Republic Region of the Americas 78 FEDERACIÓN NACIONAL DE ECUATORIANOS CON DISCAPACIDAD FÍSICA (FENEDIF) Ecuador Region of the Americas 79 ASOCIACIÓN COOPERATIVA DEL GRUPO INDEPENDIENTE PRO REHABILITACIÓN INTEGRAL (ACOGIPRI DE R.L.)  El Salvador Region of the Americas 80 GRENADA NATIONAL COUNCIL OF THE DISABLED (GNCD Grenada Region of the Americas 81 COORDINADORA DE ORGANIZACIONES DE PERSONAS CON DISCAPACIDAD DE GUATEMALA (COPDIGUA) Guatemala Region of the Americas 187   Institution Name Country   WHO region 82 GUYANA COALITION OF CITIZENS WITH DISABILITY (GCCD) Guyana Region of the Americas 83 ASOCIACIÓN NACIONAL DE DISCAPACITADOS DE HONDURAS (ANADISH) Honduras Region of the Americas 84 COMBINED DISABILITIES ASSOCIATION Jamaica Region of the Americas 85 CONFEDERACIÓN MEXICANA DE LIMITADOS FÍSICOS Y REPRESENTANTES DE DEFICIENTES MENTALES A.C.  (COMELFIRDEM) Mexico Region of the Americas 86 ORGANIZACIÓN DE REVOLUCIONARIOS DISCAPACITADOS (ORD) Nicaragua Region of the Americas 87 ASOCIACIÓN NACIONAL DE PERSONAS CON DISCAPACIDAD (ANPEDI) Panama Region of the Americas 88 ASOCIACIÓN DE REHABILITACIÓN DE IMPEDIDOS FÍSICOS DE ASUNCIÓN (ARIFA) Paraguay Region of the Americas 89 CONFEDERACIÓN NACIONAL DE DISCAPACITADOS DEL PERÚ (CONFENADIP) Peru Region of the Americas 90 ST. KITTS/NEVIS ASSOCIATION OF DISABLED PERSONS Saint Kitts and Nevis Region of the Americas 91 NATIONAL COUNCIL OF & FOR PERSONS WITH DISABILITIES INC. Saint Lucia Region of the Americas 92 NATIONAL SOCIETY OF PERSONS WITH DISABILITIES Saint Vincent and the Grenadines Region of the Americas 93 TRINIDAD & TOBAGO CHAPTER OF DPI Trinidad and Tobago Region of the Americas 94 PLENARIO NACIONAL DE ORGANIZACIONES DE IMPEDIDOS (PLENADI) Uruguay Region of the Americas 95 BANGLADESH PROTIBANDHI KALLYAN SOMITY (BPKS) Bangladesh South-East Asian Region 96 DISABLED PEOPLES' INTERNATIONAL (INDIA) (DPII) India South-East Asian Region 97 PERSATUAN PENYANDANG CACAT INDONESIA (INDONESIAN DISABLED PEOPLE ASSOCIATION) Indonesia South-East Asian Region 98 MALDIVIAN ASSOCIATION OF THE HANDICAPPED(MATH) C/O DPI MALDIVES Maldives South-East Asian Region 188   Institution Name Country   WHO region 99 NATIONAL FEDERATION OF THE DISABLED NEPAL Nepal South-East Asian Region 100 SRI LANKA CONFEDERATION OF ORGANIZATIONS OF THE HANDICAPPED PEOPLE Sri Lanka South-East Asian Region 101 COUNCIL OF DISABLED PEOPLE OF THAILAND (DPIT) Thailand South-East Asian Region 102 CHINA DISABLED PERSONS FEDERATION (CDPF) China Western Pacific Region 103 AUSTRALIAN FEDERATION OF DISABILITY ORGANISATIONS Australia Western Pacific Region 104 AUSTRALIAN FEDERATION OF DISABILITY ORGANISATIONS Australia Western Pacific Region 105 CAMBODIAN DISABLED PEOPLE'S ORGANIZATION (CDPO) Cambodia  Western Pacific Region 106 COOK ISLANDS NATIONAL DISABILITY COUNCIL Cook Islands Western Pacific Region 107 FIJI DISABLED PEOPLES ASSOCIATION (FDPA) Fiji Western Pacific Region 108 JAPAN NATIONAL ASSEMBLY OF DISABLED PEOPLES' INTERNATIONAL (DPIJ) Japan Western Pacific Region 109 LAO DISABLED PEOPLE´S ASSOCIATION Laos Western Pacific Region 110 MALAYSIAN CONFEDERATION OF THE DISABLED (MCD) Malaysia Western Pacific Region 111 MONGOLIAN FEDERATION OF DISABLED PERSONS (MFDP) Mongolia Western Pacific Region 112 DISABLED PERSONS ASSEMBLY (NEW ZEALAND) INC. (DPANZ New Zealand Western Pacific Region 113 NATIONAL ASSEMBLY OF DISABLED PEOPLE (NADP) Papua New Guinea Western Pacific Region 114 NATIONAL FEDERATION OF PERSONS WITH DISABILITIES IN THE PHILIPPINES, INC. Philippines Western Pacific Region 115 DISABILITY COUNCIL OFFICE: RAINBOW OF LOVE NATIONAL COUNCIL OF PEOPLE WITH DISABILITIES IN SAMOA Samoa Western Pacific Region 189   Institution Name Country   WHO region 116 DISABLED PEOPLE'S ASSOCIATION (DPA) Singapore Western Pacific Region 117 DISABLED PERSONS REHABILITATION ASSOCIATION Solomon Islands Western Pacific Region 118 DISABLED PEOPLE'S INTERNATIONAL KOREA (DPIK) South Korea Western Pacific Region 119 DISABILITY PROMOTION & ADVOCACY (DPA) Vanuatu Western Pacific Region    CEREBRAL PALSY AND PEDIATRIC RELATED   1 AIC CURE INTERNATIONAL CHILDREN'S HOSPITAL Kenya African Region 2 EASTERN TRANSVAAL CEREBRAL PALSY ASSOCIATION (REPUBLIC OF SOUTH AFRICA) South Africa African Region 3 NELSON MANDELA CHILDREN’S HOSPITAL South Africa African Region 4 RED CROSS WAR MEMORIAL CHILDREN'S HOSPITAL South Africa African Region 5 SA NATIONAL ASSOCIATION SPECIAL EDUCATION (SANASE) South Africa African Region 6 SOUTH AFRICAN NEURODEVELOPMENTAL ASSOCIATION THERAPY (SANDTA) South Africa African Region 7 SOUTH AFRICAN ORTHOTIC AND PROSTHETIC ASSOCIATION South Africa African Region 8 SOUTH AFRICAN SPEECH-LANGUAGE-HEARING ASSOCIATION (SASLHA) SOUTH AFRICA South Africa African Region 9 TYGERBERG CHILDREN'S HOSPITAL South Africa African Region 10 CURE CHILDREN'S HOSPITAL OF UGANDA (CCHU) Uganda African Region 11 MANSOURA UNIVERSITY CHILDREN’S  HOSPITAL Egypt Eastern Mediterranean Region 190   Institution Name Country   WHO region 12 LEBANON ASSOCIATION OF PEDIATRICS Lebanon Eastern Mediterranean Region 13 ASSOTIATION FOR COMPLEX CARE OF PEOPLE WITH CEREBRAL PALSY Czech European Region 14 EUROPEAN ASSOCIATION OF SCHOOLS OF SOCIAL WORK AND SOCIAL WORK EDUCATORS Europe European Region 15 THE CEREBRAL PALSY ASSOCIATION OF UUSIMAA FINLAND Finland European Region 16 ICF GERMAN DISCUSSION LIST  Germany European Region 17 CEREBRAL PALSY GREECE Greece European Region 18 EUROPEAN ACADEMY OF CHILDHOOD DISABILITY (EACD) International European Region 19 IRISH ASSOCIATION OF TEACHERS IN SPECIAL EDUCATION Ireland European Region 20 LITHUANIAN CEREBRAL PALSY ASSOCIATION Lithuania European Region 21 ASSOCIACAO PORTUGUESA DE PARALISIA CEREBRAL Portugal European Region 22 SONCEK, CEREBRAL PALSY ASSOCIATION OF SLOVENIA Slovenia European Region 23 VEREINIGUNG CEREBRAL SCHWEIZ Switzerland European Region 24 BRITISH ASSOCIATION OF SOCIAL WORKERS UK European Region 25 CEREBRAL PALSY ASSOCIATION OF UK UK European Region 26 CENTER FOR INTERNATIONAL REHABILITATION RESEARCH INFORMATION AND EXCHANGE International International 27 CEREBRAL PALSY INTERNATIONAL SPORTS AND RECREATION ASSOCIATION International International 28 CONDUCTIVE WORLD International International 191   Institution Name Country   WHO region 29 CURE INTERNATIONAL International International 30 INTERNATIONAL ASSOCATION DISABILITY AND ORAL HEALTH International International 31 INTERNATIONAL ASSOCIATION OF SPECIAL EDUCATION International International 32 INTERNATIONAL CEREBRAL PALSY SOCIETY International International 33 INTERNATIONAL CHILD NEUROLOGY ASSOCIATION  International International 34 INTERNATIONAL PEDIATRIC ASSOCIATION International International 35 INTERNATIONAL SOCIETY FOR PROSTHETICS AND ORTHOTICS International International 36 INTERNATIONAL SOCIETY OF PHYSICAL AND REHABILITATION MEDICINE (ISPRM) International International 37 ARN ASSOCIATION OF REHABILITATION NURSES International International 38 INSTITUTO DE NEUROLOGIA DE BUENOS AIRES Argentina Region of the Americas 39 INSTITUTO MEDICO ARGENTINO DE REHABILITACION Argentina Region of the Americas 40 NEUROLOGY DEPARTMENT, HOSPITAL ITALIANO Argentina Region of the Americas 41 SOCIEDAD ARGENTINA DE PEDIATRIA (SAP) Argentina Region of the Americas 42 ALBERTA TEACHER'S ASSOCIATION Canada Region of the Americas 43 BC ASSOCIATION OF SOCIAL WORKERS Canada Region of the Americas 44 BC CHILDREN HOSPITAL_CP RELATED HEALTH PROFESSIONALS Canada Region of the Americas 45 BLOORVIEW Canada Region of the Americas 192   Institution Name Country   WHO region 46 CANADIAN ASSOCIATION OF SPEECH-LANGUAGE PATHOLOGISTS AND AUDIOLOGISTS (CASLPA) CANADA Canada Region of the Americas 47 CANADIAN PEDIATRIC SOCIETY_DEVELOPMENTAL AND BEHAVIOURAL SECTION Canada Region of the Americas 48 CANCHILD Canada Region of the Americas 49 CEREBRAL PALSY ASSOCIATION IN ALBERTA   Canada Region of the Americas 50 CEREBRAL PALSY ASSOCIATION OF  NEWFOUNDLAND Canada Region of the Americas 51 CEREBRAL PALSY ASSOCIATION OF BRITISH COLUMBIA Canada Region of the Americas 52 CEREBRAL PALSY ASSOCIATION OF MANITOBA   Canada Region of the Americas 53 CEREBRAL PALSY FOUNDATION (ST. JOHN) INC.   Canada Region of the Americas 54 HALIFAX REGIONAL CEREBRAL PALSY ASSOCIATION  Canada Region of the Americas 55 ICF MCMASTER DISCUSSION LIST  Canada Region of the Americas 56 ONTARIO FEDERATION OF CEREBRAL PALSY Canada Region of the Americas 57 PROVINCIAL THERAPY ADVISOR EMAIL DISTRIBUTION  Canada Region of the Americas 58 RESEARCH ALLIANCE FOR CHILDREN WITH SPECIAL NEEDS Canada Region of the Americas 59 SASKATCHEWAN CEREBRAL PALSY ASSOCIATION  Canada Region of the Americas 60 SPECIAL EDUCATION ASSOCIATION OF BRITISH COLUMBIA Canada Region of the Americas 61 SUNNY HILL  HEALTH CENTRE Canada Region of the Americas 62 THE TEACHER'S GUIDE Canada Region of the Americas 193   Institution Name Country   WHO region 63 REHABILITATION CENTER Colombia Region of the Americas 64 AMERICAN ACADEMY FOR CEREBRAL PALSY AND DEVELOPMENTAL MEDICINE (AACPDM) USA Region of the Americas 65 CALIFORNIA ASSOCIATION OF RESOURCE SPECIALISTS USA Region of the Americas 66 COUNCIL OF SOCIAL WORK EDUCATION USA Region of the Americas 67 JOURNAL OF PEDIATRIC REHABILITATION MEDICINE; CHILDREN'S HOSPITAL & RESEARCH CENTER OAKLAND  USA Region of the Americas 68 NATIONAL ASSOCIATION OF SPECIAL EDUCATION TEACHERS USA Region of the Americas 69 NATIONAL ASSOCIATIONS OF SOCIAL WORKERS USA Region of the Americas 70 NORTH CAROLINA SCHOOL SOCIAL WORKERS ASSOCIATION USA Region of the Americas 71 SOCIETY FOR SOCIAL WORK LEADERSHIP IN HEALTH CARE USA Region of the Americas 72 SPECIAL EDUCATION PARENT TEACHER ASSOCIATION USA Region of the Americas 73 UNITED CEREBRAL PALSY ASSOCIATION USA Region of the Americas 74 BANGLADESH PROTIBANDHI KALLYAN SOMITY (BPKS) AND NATIONAL ALLIANCE OF DISABLED PEOPLES’ ORGANIZATIONS (NADPO) Bangladesh South-East Asian Region 75 ACTION FOR ABILITIES DEVELOPMENT & INCLUSION(AADI) India South-East Asian Region 76 DISHA CENTRE FOR SPECIAL EDUCATION (JAIPUR) India South-East Asian Region 77 INDIAN ASSOCIATION OF CEREBRAL PALSY India South-East Asian Region 78 INDIAN INSTITUTE OF CEREBRAL PALSY India South-East Asian Region 79 INSTITUTE FOR CHILDHOOD DISABILITY India South-East Asian Region 194   Institution Name Country   WHO region 80 NATIONAL TRUST India South-East Asian Region 81 THE SPASTICS SOCIETY OF INDIA India South-East Asian Region 82 UDAAN FOR THE DISABLED India South-East Asian Region 83 VIDYA SAGAR India South-East Asian Region 84 AUSTRALASIAN ACADEMY OF CEREBRAL PALSY AND DEVELOPMENTAL MEDICINE (AUSACPDM) Australia Western Pacific Region 85 AUSTRALIAN ASSOCIATION OF SOCIAL WORKERS Australia Western Pacific Region 86 AUSTRALIAN ASSOCIATION OF SPECIAL EDUCATION INC. (AASE) Australia Western Pacific Region 87 CEREBRAL PALSY EDUCATION CENTRE Australia Western Pacific Region 88 THE CEREBRAL PALSY FOUNDATION Australia Western Pacific Region 89 THE HONG KONG ASSOCIATION OF SPEECH THERAPISTS PEOPLES REPUBLIC OF CHINA China Western Pacific Region 90 THE SPEECH-LANGUAGE-HEARING ASSOCIATION OF THE REPUBLIC OF CHINA TAIWAN China Western Pacific Region 91 ASIAN SOCIETY FOR COMPUTER ASSISTED ORTHOPAEDIC SURGERY (CAOS-ASIAN)  China Western Pacific Region 92 THE CHINESE UNIVERSITY OF HONG KONG-DEPARTMENT OF PEDIATRICS China Western Pacific Region 93 QUEEN MARY HOSPITAL- DEPARTMENT OF PEDIATRICS AND ADOLESCENT China Western Pacific Region 94 DEPARTMENT OF NEUROLOGY-THE CHINESE UNIVERSITY OF HONG KONG China Western Pacific Region 95 DEPARTMENT OF NEUROSURGERY-THE CHINESE UNIVERSITY OF HONG KONG China Western Pacific Region 96 JAPANESE SOCIETY OF CHILD NEUROLOGY Japan Western Pacific Region 195   Institution Name Country   WHO region 97 THE JAPANESE ASSOCIATION OF COMMUNICATION DISORDERS JAPAN  Japan Western Pacific Region 98 CEREBRAL PALSY SOCIETY OF NEW ZEALAND New Zealand Western Pacific Region 99 PHILIPPINE ASSOCIATION OF SPEECH PATHOLOGISTS (PASP) PHILIPPINES  Philippines Western Pacific Region 100 SPASTIC CHILDREN'S ASSOCIATION OF SINGAPORE Singapore Western Pacific Region                     196  Appendix C  Expert Survey Study– Questionnaire This appendix provides the questions that were included in the expert survey study. The questionnaire covered all ICF-CY components, a definition of each component was provided with the question. Questions were about children and youth with CP in general, including children and youth with all levels of functioning, anatomical distributions and types. Answers were organized by two age-groups: younger than 6 years of age, and 6 years of age and older.  For the component activities and participation, experts were asked to list areas where children and youth with CP excel and list areas of functional limitations or restrictions. For the component environmental factors, experts were asked to provide facilitators and barriers.   Body Structures are anatomical parts of the body such as organs, limbs and their components. If you think about the body of children and youth with Cerebral Palsy, which body structures are of greatest interest?  Body Functions are the physiological functions of body systems (including psychological functions). If you think about the body and mind of children and youth with Cerebral Palsy, what body functions are of greatest interest?   Activities and Participation: Activity is the execution of a task or action by an individual.  Participation is involvement in a life situation.  If you think about the daily life of children and youth with Cerebral Palsy, what functional areas are of greatest interest? 197   Environmental factors—Facilitators & Barriers  Environmental factors make up the physical, social and attitudinal environment in which people live and conduct their lives. If you think about the physical and social environment and the living conditions of children and youth with Cerebral Palsy, what about the environment is supportive or hindering for them?  Personal Factors are the particular background of an individual’s life and living, and comprise features of the individual that are not part of a health condition or health states.  If you think about children and youth with Cerebral Palsy as individuals, what personal characteristics are important about them?             198  Appendix D  Qualitative Study– Questionnaire This section provides the questions included in the qualitative study interviews. For the component activities and participation, the question included abilities and limitations. For the component environmental factors, the question included facilitators as well as barriers.   Body Structures  Can you tell me what parts of your body/child’s body give you/him trouble, if any? Body Functions   Tell me about, what parts of your body/child's body make it hard to do the things you/your child want/s, if any?” Activities and Participation  Tell me about things you/your child do/es every day, What activities are you/your child able to do?” Tell me about things you/your child do/es every day, What activities are more difficult for you/your child to do?” Environmental Factors  Tell me about your/his family, school, and neighbourhood, What things help you/your child do the activities? Tell me about your/his family, school, and neighbourhood, What things make the activities hard or difficult?” Personal Factors - How would you describe yourself/your child?   199  Appendix E  Distribution of Single-Item Measures by ICF-CY Component This appendix provides the content of the single-item measures at the ICF-CY component level. The single-item measures identified in 4 or more papers included in the systematic review are shown.     ICF-CY components  Single-Item Measures Frequency of use in included papers B S AP EF PF Others 1 mobility of joints 54 +      2 spasticity 52 +      3 gait pattern 44 +      4 muscle tone 26 +      5 weight 24 +      6 muscle power 23 +      7 height 22 +      8 walking 15   +    9 energy cost, aerobic 14 +      10 adverse events, drugs 14    +   11 bone density, calcium metabolism 8 +      12 joint alignment 8 +      13 caregivers' opinion 8    +   14 drooling 5 +      15 pain 5 +      16 pubertal functions 5 +      17 mobility 5   +    18 muscle characteristics 5  +     19 metabolic rate 4 +      20 motor reflexes 4 +      21 arm use 4   +    22 feeding 4   +    23 Functioning (overall) 4   +    24 motor function 4   +    25 caregiver satisfaction 4    +   26 health care services (utilization) 4    +   27 muscle lower legs (characteristics) 4  +     B, body function; S, body structure; A&P, activity and participation; EF, environmental factors, PF, personal factors; ICF-CY, International Classification of Functioning, Disability and Health children and youth version. *Other=not definable plus not covered by the ICF-CY. 200  Appendix F  Multiple-Item Measures Multiple-Item measures: This section of Appendix F shows the content of the multiple-item measures at the ICF-CY component level. F.1 Distribution of Content of Multiple-Item Measures by ICF-CY Components, n=78 This sub-section shows the frequency multiple-item measures has been used and the distribution of unique concepts per ICF-CY component.  Distribution of Content of Multiple-Item Measures by ICF-CY Components, n=78                               (Continued)    Name (Abbreviation)* #  B N(%)  S N(%)  A&P N(%)  EF N(%)  PF N(%)  Others N(%) Total number of unique concepts¶  Linked  1 The Abbreviated Conners Rating Scale (ACRS) 1 9(47.4) 0 10(52.6) 0 0 0 19 Items 2 Assessment of Motor and Process Skills (AMPS) 1 5(50) 0 5(50) 0 0 0 10 Domains 3 Activities Scale for Kids  (ASK) 1 1(3.8) 0 25(96.2) 0 0 0 26 Items 4 Bimanual fine motor function (BFMF) 1 0 0 3(60) 2(40) 0 0 5 Items 5 Bruininks Oseretsky Test of Motor Proficiency  (BOTMP) 3 2(28.6) 0 5(71.4) 0 0 0 7 Items 6 Behaviour Rating Inventory of Executive Functioning  (BRIEF) 1 4(66.7) 0 1(16.7) 0 0 1(16.7) 6 Domains 7 The Bayley Scales of Infant Development (2nd edn;)  (BSID-II) 2 3(18.8) 0 13(81.3) 0 0 0 16 Domains 8 Children's Assessment of Participation and Enjoyment  (CAPE) 5 0 0 23(100) 0 0 0 23 Items 9 Cognitive Assessment System (CAS) 1 1(100) 0 0 0 0 0 1 Purpose 10 Child Behaviour Checklist  (CBCL) 3 32(68.1) 2(4.3) 11(23.4) 0 1(2.1) 1(2.1) 47 Items 11 The MacArthur Communicative Development Inventory (CDI) 1 0 0 2(100) 0 0 0 2 Domains  201  Distribution of Content of Multiple-Item Measures by ICF-CY Components, n=78                               (Continued)    Name (Abbreviation)* #  B N(%)  S N(%)  A&P N(%)  EF N(%)  PF N(%)  Others N(%) Total number of unique concepts¶  Linked  12 Child Health Questionnaire (CHQ) 19 21(35) 0 27(45) 4(6.7) 1(1.7) 7(11.7) 60 Items 13 Coping Inventory (CI) 1 1(33.3) 0 0 0 1(33.3) 1(33.3) 3 Domains 14 Columbia Mental Maturity Scale (CMMS) 1 1(100) 0 0 0 0 0 1 Purpose 15 Canadian Occupational Performance Measure  (COPM) 8 0 0 30(100) 0 0 0 30 Domains 16 Caregiver Priorities and Child Health Index of Life with Disabilities  (CPCHILD) 1 3(8.1) 0 28(75.7) 2(5.4) 0 4(10.8) 37 Items 17 Quality of life of children with CP (CPQOL) 1 8(17.8) 0 21(46.7) 10(22.2) 1(2.2) 5(11.1) 45 Items 18 Caregiver Questionnaire (CQ) 1 4(14.3) 0 17(60.7) 3(10.7) 1(3.6) 3(10.7) 28 Items 19 The Children's Report of Parental Behavior Inventory  (CRPBI) 1 0 0 1(100) 0 0 0 1 Domains 20 Coping with Stress Scale (CSS) 1 0 0 1(100) 0 0 0 1 Purpose 21 Drooling Impact Scale  (DIS) 1 3(37.5) 0 3(37.5) 1(12.5) 0 1(12.5) 8 Items 22 Dimension of Mastery Questionnaire (DMQ) 1 0 0 4(80) 0 1(20) 0 5 Domains 23 Developmental Test of Visual Perception 2nd ed (DTVP-2) 1 3(75) 0 1(25) 0 0 0 4 Domains 24 Functional Ambulatory Category (FAC) 1 0 0 1(33.3) 1(33.3) 0 1(33.3) 3 Domains 25 Gillette Functional Assessment Questionnaire (FAQ) 10 2(11.8) 0 15(88.2) 0 0 0 17 Items 26 Family Environment Scale (FES) 1 0 0 7(77.7) 0 1(11.1) 1(11.1) 9 Domains 27 Functional Independence Measure  (FIM) 1 7(24.1) 0 22(75.9) 0 0 0 29 Items 202  Distribution of Content of Multiple-Item Measures by ICF-CY Components, n=78                               (Continued)    Name (Abbreviation)* #  B N(%)  S N(%)  A&P N(%)  EF N(%)  PF N(%)  Others N(%) Total number of unique concepts¶  Linked  28 Face, Legs, Activity, Cry, Consolability  scale (FLACC) 1 1(100) 0 0 0 0 0 1 Purpose 29 Family Support Scale  (FSS) 1 0 0 0 0 0 1(100) 1 Purpose 30 Gillette Gait Index  (GGI) 1 2(100) 0 0 0 0 0 2 Purpose 31 General Health Questionnaire (GHQ) 1 11(78.6) 0 1(7.1) 0 1(7.1) 1(7.1) 14 Items 32 Global Measure of Change (GMC) 1 3(75) 0 1(25) 0 0 0 4 Domains 33 Griffiths Mental Development Scale (GMDS) 3 5(55.6) 0 4(44.4) 0 0 0 9 Domains 34 Gross Motor Function Measure (GMFM) 92 3(12) 0 22(88) 0 0 0 25 Items 35 Gross Motor Performance Measure  (GMPM) 2 3(100) 0 0 0 0 0 3 Domains 36 Harter-SPPC-CP (HSPPC-CP) 1 4(57.1) 0 3(42.9) 0 0 0 7 Domains 37 Health Utilities Index (HUI3) 2 13(56.5) 0 6(26.1) 4(17.4) 0 0 23 Items 38 Impact on family scale (IMPACTFS) 2 0 0 2(40) 1(20) 0 2(40) 5 Domains 39 Jebsen-Taylor Test of Hand Function (JTHF) 1 0 0 1(100) 0 0 0 1 Purpose 40 KIDSCREEN  (KSCREEN) 5 7(46.7) 0 3(20) 2(13.3) 1(6.7) 2(13.3) 15 Domains 41 Lifestyle Assessment Questionnaire-CP  (LAQ-CP) 1 0 0 15(46.9) 15(46.9) 0 2(6.3) 32 Items 42 Leiter International Performance Scale (LIPS) 1 1(100) 0 0 0 0 0 1 Purpose 43 Leiter International Performance Scale-Revised (LEITER-R) 2 1(100) 0 0 0 0 0 1 Purpose 203  Distribution of Content of Multiple-Item Measures by ICF-CY Components, n=78                               (Continued)    Name (Abbreviation)* #  B N(%)  S N(%)  A&P N(%)  EF N(%)  PF N(%)  Others N(%) Total number of unique concepts¶  Linked  44 Life-Habits questionnaire (LHQ) 2 0 0 24(96) 1(4) 0 0 25 Domains 45 LIVRE Landelijk informatiesysteem voor revalidatie (LIVRE) 1 0 0 5(100) 0 0 0 5 Domains 46 Locus of Control Scale (LOC) 1 1(100) 0 0 0 0 0 1 Purpose 47 Movement ABC (MABC) 1 2(50) 0 2(50) 0 0 0 4 Domains 48 Measurement of Activities of Daily Living questionnaire (MADL) 1 0 0 1(100) 0 0 0 1 Purpose 49 Melbourne Assessment of Upper Limb Function (MAULF) 5 0 0 4(100) 0 0 0 4 Domains 50 Mobility Questionnaire  (MobQues) 1 0 0 2(100) 0 0 0 2 Purpose 51 Ambulation Questionnaire  (MoVra) 1 0 0 2(100) 0 0 0 2 Purpose 52 Obstructive Sleep Apnea questionnaire (OSA) 1 10(90.9) 0 0 0 0 1(9.1) 11 Items 53 Physical Activity Questionnaire for Adolescents (PAQ-A) 1 0 0 1(100) 0 0 0 1 Purpose 54 Peabody Developmental Motor Scales (PDMS-2) 3 2(33.3) 0 4(66.7) 0 0 0 6 Domains 55 Pediatric Evaluation of Disability Inventory (PEDI) 35 13(17.8) 0 58(79.5) 2(2.7) 0 0 73 Items 56 The Pediatric Quality of Life Inventory  (PEDSQL) 9 6(30) 0 10(50) 3(15) 0 1(5) 20 Items 57 Portage Guide to Early Education (PGEE) 1 2(33.3) 0 4(66.7) 0 0 0 6 Domains 58 Pediatric Outcomes Data Collection Inventory 12 6(13) 0 32(69.6) 5(10.9) 1(2.2) 2(4.3) 46 Items 204  Distribution of Content of Multiple-Item Measures by ICF-CY Components, n=78                               (Continued)    Name (Abbreviation)* #  B N(%)  S N(%)  A&P N(%)  EF N(%)  PF N(%)  Others N(%) Total number of unique concepts¶  Linked  (PODCI) 59 Physician's rating scale (PRS) 9 1(100) 0 0 0 0 0 1 Items 60 Pediatric Volitional Questionnaire  (PVQ) 1 3(75) 0 1(25) 0 0 0 4 Domains 61 Quality of Life Instrument for People With Developmental Disabilities-children version (QOLDD) 1 0 0 2(16.7) 10(83.3) 0 0 12 Domains 62 Quality of Upper Extremity Skills Test  (QUEST) 13 5(71.4) 0 2(28.6) 0 0 0 7 Items 63 The Revised Children's Manifest Anxiety Scale  (RCMAS) 1 5(83.3) 0 0 0 1(16.7) 0 6 Domains 64 Reynell Developmental Language Scales (REYDLS) 1 0 0 3(100) 0 0 0 3 Domains 65 Stanford-Binet Intelligence Test (SBIQ) 1 1(12.5) 0 6(75) 0 0 1(12.5) 8 Domains 66 Strength and Difficulties Questionnaire (SDQ) 5 10(40) 0 12(48) 1(4) 1(4) 1(4) 25 Items 67 School Function Assessment  (SFA) 2 3(7.9) 0 27(71.1) 8(21.1) 0 0 38 Domains 68 Self-Perception Profile for College Students (SPPCS) 1 6(50) 0 5(41.7) 0 1(8.3) 0 12 Domains 69 TNO-AZL questionnaire for Children's HRQOL (TACQOL) 2 18(40.9) 0 22(50) 1(2.3) 1(2.3) 2(4.5) 44 Items 70 Toddler Infant Motor Evaluation  (TIME) 1 5(55.6) 0 3(33.3) 0 0 1(11.1) 9 Domains 71 Test of Nonverbal Intelligence, 2nd edition  (TONI-2) 1 3(100) 0 0 0 0 0 3 Domains 72 Test of Nonverbal Intelligence-3 (TONI-3) 1 4(100) 0 0 0 0 0 4 Domains 73 Test for Reception of Grammar (TRG) 1 0 0 1(100) 0 0 0 1 Purpose 205  Distribution of Content of Multiple-Item Measures by ICF-CY Components, n=78                               (Continued)    Name (Abbreviation)* #  B N(%)  S N(%)  A&P N(%)  EF N(%)  PF N(%)  Others N(%) Total number of unique concepts¶  Linked  74 Vineland Adaptive Behavior Scales (VABS) 8 7(13) 0 44(81.5) 1(1.9) 1(1.9) 1(1.9) 54 Items 75 WeeFIM (WEEFIM) 4 1(5.6) 0 17(94.4) 0 0 0 18 Domains 76 The Wechsler Intelligence Scale for Children-III (WISC-III) 1 8(66.7) 0 4(33.3) 0 0 0 12 Domains 77 Wechsler Preschool and Primary Scale of Intelligence (WPPSI) 2 2(25) 0 6(75) 0 0 0 8 Domains 78 Youth Quality of Life Instrument Research Version  (YQOL-R) 1 11(44) 0 8(32) 4(16) 1(4) 1(4) 25 Items  *Measures order by abbreviation alphabetical order #Number of citations where measure was used ¶Total number of meaningful concepts without duplications per measure. Abbreviations: B, body function; S, body structure; A&P, activity and participation; EF, environmental factors, PF, personal factors; ICF-CY, International Classification of Functioning, Disability and Health children and youth version. Other=not definable plus not covered by the ICF-CY. Propose combination of measures highlighted in bold Multiple-Item Measure references provided below: Name (Abbreviation)  Reference                                                 (Continued) The Abbreviated Conners Rating Scale (ACRS) Conners C.K. Conners' rating scales revised. (2001). Multi-Health Systems, Incorporated.  Assessment of Motor and Process Skills (AMPS)  Fisher A.G., Jones k.G. (2010). Assessment of Motor and Process Skills: Volume 1- Development, standardization and administration manual- 7th ed. Fort Collins, CO: Three Star Press.    206  Name (Abbreviation)  Reference                                                 (Continued) Activities Scale for Kids  (ASK)  Young N.L, Williams J.I, Yoshida K.K., Wright J.G. (2000). Measurement properties of the activities scale for kids. Journal of Clinical Epidemiology, 53:125-137. Bimanual fine motor function (BFMF) Beckung E., Hagberg G. (2002). Neuroimpairments, activity limitations,and participation restrictions in children with cerebral palsy.Developmental Medicine and Child Neurology;44(5):309-316.  Bruininks Oseretsky Test of Motor Proficiency  (BOTMP)  Flegel J, & Kolobe T. (2002). Predictive Validity of the Test of Infant Motor Performance as Measure by the Bruininks-Oseretsky Test of Motor Proficiency at School Age. Physical Therap;82:762-771. Behaviour Rating Inventory of Executive Functioning  (BRIEF)  Gioia, G., Isquith, P.K., Guy, S.C., and Kenworthy, L.; Reviewed by Baron, I.S. (2000). "Test Review: Behavior Rating Inventory of Executive Function". Child Neuropsychology 6 (3): 235–238.    The Bayley Scales of Infant Development (2nd edn;)  (BSID-II) Bayley N. (2006). Bayley scales of infant and toddler development–third edition: Technical manual. San Antonio, TX: Harcourt Assessment. Children's Assessment of Participation and Enjoyment  (CAPE)   King, G., Law, M., King, S., Hurley, P., Hanna, S., Kertoy, M., Rosenbaum, P., & Young, N. (2004). Children's Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities of Children (PAC). San Antonio, TX: Harcourt Assessment, Inc.   Cognitive Assessment System (CAS) Das J.P., Naglieri J.A (1995). The Das-Naglieri Cognitive Assessment System. Chicago, IL, Riverside Publishing. Child Behaviour Checklist  (CBCL) Achenbach, T.M., & Rescorla, L. A. (2001). Manual for the ASEBA School-Age Forms and Profiles. Burlington, VT: University of Vermont, Research Center for Children, Youth, and Families. The MacArthur Communicative Development Inventory (CDI) Feldman, H. M., Dollaghan, C. A., Campbell, T. F., Kurs- Lasky, M., Janosky, J. E., & Paradise, J. L. (2000). Measurement properties of the MacArthur Communicative Development Inventories at ages one and two years. Child Development, 71, 310–322.  207  Name (Abbreviation)  Reference                                                 (Continued) Child Health Questionnaire (CHQ)  Landgraf JM, Maunsell E, Speechley KN, Bullinger M, Campbell S, Abetz L, Ware JE. (1998). Canadian-french, german and UK versions of the child health questionnaire: Methodology and preliminary item scaling results. Qual Life Res;7(5):433-45. Coping Inventory (CI)  Zeitlin S. (1985). Coping Inventory: a measure of adaptive behavior. Bensenville: Scholastic Testing Service. Columbia Mental Maturity Scale (CMMS) Pelechano, V., & Massieu, M. P. (1975). Dimensional analysis of the Columbia Mental Maturity Scale (CMMS), 1959 version: Analisis y Modificacion de Conducta Vol 1(1), 111-137.  Canadian Occupational Performance Measure  (COPM) Law, M., Baptiste, S., Carswell, A., McColl, M. A., Polatajko, H., & Pollock, N. (1998).  Canadian Occupational Performance Measure (2nd ed.). Toronto: The Canadian Association of Occupational Therapists. Caregiver Priorities and Child Health Index of Life with Disabilities  (CPCHILD)  Narayanan U.G, Fehlings D, Weir S., Knights S,. Kiran S, & Campbell K. (2006). Initial development and validation of the caregiver priorities and child health index of life with disabilities (CPCHILD). Developmental Medicine and Child Neurology;48(10):804-12. Quality of life of children with CP (CPQOL)  Waters E., Maher E., Salmon L., Reddihough D., & Boyd R. (2005). Development of a condition-specific measure of quality of life for children with cerebral palsy: Empirical thematic data reported by parents and children. Child Care Health Dev ;31(2):127-35. Caregiver Questionnaire (CQ)   Schneider JW, Gurucharri LM, Gutierrez AL, Gaebler-Spira DJ. (2001). Health-related quality of life and functional outcome measures for children with cerebral palsy. Developmental Medicine and Child Neurology;43(9):601-8. The Children's Report of Parental Behavior Inventory  (CRPBI) Schaefer, E.S. (1965). Children’s reports of parental behavior: An inventory. Child Development, 36, 413–424.  Coping with Stress Scale (CSS) Türküm, A.S. (2002). Stresle Ba a Ç kma Ölçe inin Geli tirilmesi: Geçerlik ve Güvenilirlik Çal malar Türk Psiko. Dan. ve Reh. Derg., 2(18): 25-34. Drooling Impact Scale  (DIS)   Reid S.M., Johnson H.M., Reddihough D.S.(2010).The Drooling Impact Scale: a measure of the impact of drooling in children with developmental disabilities. Developmental Medicine and Child Neurology;52(2):e23-8. 208  Name (Abbreviation)  Reference                                                 (Continued) Dimension of Mastery Questionnaire (DMQ)  Mann, L., P. Burnett, M. Radford and S. Ford, (1997).The Melbourne Decision-MakingQuestionnaire: An instrument for measuring patterns for coping with decisional conflict. J. of Beh. Dec. Making, 10: 1-19.  Developmental Test of Visual Perception 2nd ed (DTVP-2) Hammill, D. D., Pearson, N. A., & Voress, J. K. (1993). Developmental test of visual perception (2nd ed.). Austin, TX: Pro-Ed. Functional Ambulatory Category (FAC) Holden, M. K., Gill K.M., et al. (1984). "Clinical gait assessment in the neurologically impaired. Reliability and meaningfulness." Physical Therapy 64(1): 35-40. Gillette Functional Assessment Questionnaire (FAQ) Brown I., Raphael D., & Renwick R. (1997). Quality of Life Instrument for People With Developmental Disabilities-children version. Toronto, Canada: Centre for Health Promotion.  Family Environment Scale (FES) Moos R, Moos B. (2002).  A social climate scale: Family Environment Scale Manual—development, applications, research. 3rd ed. Palo Alto: Mindgarden Inc. Functional Independence Measure  (FIM)  Hamilton B B, Laughlin J A, Granger C V, Kayton R M. (1991). Interrater agreement of the seven level Functional Independence Measure. Arch Phys Med Rehabil 72, 790.  Face, Legs, Activity, Cry, Consolability  scale (FLACC) Merkel S., et al. (1997). The FLACC: A behavioral scale for scoring postoperative pain in young children. Pediatr Nurse 23(3), p. 293-297.  Family Support Scale  (FSS) Dunst, C. J., Jenkins, V., & Trivette, C. M. (2007). Family Support Scale Reliability and Validity. Asheville, NC. Winterberry Press, Gillette Gait Index  (GGI)    Novacheck T.F., Stout J.L., & Tervo R. (2000). Reliability and validity of the Gillette Functional Assessment Questionnaire as an outcome measure in children with walking disabilities. Journal of Pediatric Orthopedic; 20: 75–81  General Health Questionnaire (GHQ) Goldberg, D. P. & Williams, P. (1988). The User’s Guide to the General Health Questionnaire. NFER-Nelson: Windsor. Global Measure of Change (GMC)  Kutner, N. G., Mistretta, E. F., & Barnhart, H. X. (1999). Family members’ perceptions of quality of life change in dementia SCU residents. Journal of Applied Gerontology, 18(4), 423-439. Griffiths Mental Development Scale (GMDS)  Huntley M. (1996).The Griffiths Mental Development Scales: From birth to 2 years. 209  Name (Abbreviation)  Reference                                                 (Continued)  ARICD.  Gross Motor Function Measure (GMFM)  Russell, D., Rosembaum P. L., Avery L., Lane M. The Gross Motor Function Measure. GMFM-88 and GMFM-66 (Users’ Manual). Clinics in Developmental Medicine No. 159. London: Mac Keith Press. Gross Motor Performance Measure  (GMPM)   Boyce, W., Gowland, C., Rosenbaum, P., Hardy, S., Lane, C., Plews, N., Goldsmith, C., Russell, D., Wright, V., Potter, S., & Harding, D. (1998). Gross Motor Performance Measure Manual. Kingston, ON: Queen's University, School of Rehabilitation Therapy. Harter-SPPC-CP (HSPPC-CP) Harter S. (1982).The perceived competence scale for children. Child Dev;53:87-97. Health Utilities Index (HUI3) Horsman J, Furlong W, Feeny D, Torrance G. (2003).The health utilities index (HUI): Concepts, measurement properties and applications. Health Qual Life Outcomes16;1:54. Impact on family scale (IMPACTFS) Stein R.E, Riessman C.K. (1980).The development of an impact-on-family scale: preliminary findings. Medical Care;18(4):465-72. Jebsen-Taylor Test of Hand Function (JTHF) Stern E.B. (1992). Stability of the Jebsen-Taylor Hand Function Test across three test sessions.American Journal of Occupational Therapy;46(7):647-9.  KIDSCREEN (KSCREEN) The KIDSCREEN Group Europe. (2006). The KIDSCREEN Questionnaires - Quality of life questionnaires for children and adolescents. Handbook. Lengerich: Pabst Science Publishers.   Lifestyle Assessment Questionnaire-CP  (LAQ-CP)  Mackie, P.C., E.C. Jessen, and S.N. Jarvis. (1998).The Lifestyle Assessment Questionnaire: An instrument to measure the impact of disability on the lives of children with cerebral palsy and their families. Child: care, health and development 24(6): p. 473-486. Leiter International Performance Scale (LIPS) Leiter, R.G. (1980). Leiter International Performance Scale, instruction manual. Chicago: Stoelting.  Leiter International Performance Scale-Revised (LEITER-R) Roid, G.H. & Miller, L.J. (1995, 1997). Leiter International Performance Scale-Revised. Wood Dale, IL: Stoelting Col.  210  Name (Abbreviation)  Reference                                                 (Continued) Life-Habits questionnaire (LHQ) Lemmens J, I S M van Engelen E, Post MW, Beurskens AJ, Wolters PM, de Witte LP. (2008). Reproducibility and validity of the Dutch Life Habits Questionnaire (LIFE-H 3.0) in older adults. Clin Rehabil. LIVRE Landelijk informatiesysteem voor revalidatie (LIVRE)  Goor GHW, editor, Landelijk informatiesysteem voor revalidatie (LIVRE). (1995). Nedrelandse vereniging van artsen voor revalidatie en physische geneeskunde [Dutch society of physicans for rehabilitation medicine]. Instruction book. Utrecht: VRIN. Locus of Control Scale (LOC) Lumpkin, J.R. (1985). Validity of a brief locus of control scale for survey research. Psychological Reports, 57, 655-659.   Movement ABC (MABC)     Schoemaker MM, Smits-Engelsman BCM, Jongmans MJ. (2003). Psychometric properties of the movement ABC checklist as a screening instrument for children with Developmental Coordination Disorder. Br J Educ Psychol; 73: 425–41.  Measurement of Activities of Daily Living questionnaire (MADL) Blank R. (2007). Measurement of activities of daily living in children--standardisation of a screening questionnaire. Klin Padiatr.;219(1):32-6. Melbourne Assessment of Upper Limb Function (MAULF)  Bourke-Taylor, H. (2003). Melbourne Assessment of Unilateral Upper Limb Function: Construct validity and correlation with the Pediatric Evaluation of Disability Inventory. Developmental Medicine and Child Neurology, 45, 92-96.  Mobility Questionnaire  (MobQues)     Van Ravesteyn NT, Dallmeijer AJ, Scholtes VA, Roorda LD, Becher JG. (2010). Measuring mobility limitations in children with cerebral palsy: interrater and intrarater reliability of a mobility questionnaire (MobQues). Developmental Medicine and Child Neurology 52(2):194-9.   Ambulation Questionnaire  (MoVra) Scholtes V. MOVRA version 1.3. In press. 211  Name (Abbreviation)  Reference                                                 (Continued) Obstructive Sleep Apnea questionnaire (OSA)   Strocker AM, Carrer A, Shapiro NL. (2005). The validity of the OSA-18 among three groups of pediatric patients. International Journal of Pediatric Otorhinolaryngology;69(2):241–247.   Physical Activity Questionnaire for Adolescents (PAQ-A)   Kowalski, K., Crocker, P., & Donen, R. The Physical Activity Questionnaire for Older Children (PAQ-C) and Adolescents (PAQ-A) Manual. College of Kinesiology, University of Saskatchewan. Peabody Developmental Motor Scales (PDMS-2) Folio, M. R., & Fewell, R. R. (2000). Peabody DevelopmentalMotor Scales 2nd edition. Austin, Texas: PRO-ED.  Pediatric Evaluation of Disability Inventory (PEDI)  Hayley, S.,Coster W. J., Ludlow L. H., Haltiwanger J. T., Andrellos P. J. (1992). Pediatric Evaluation of Disability Inventory (PEDI) development, standardization and administration manual. Boston: PEDI Research Group, New England Medical Center Hospitals.  The Pediatric Quality of Life Inventory  (PEDSQL)   Varni JW, Burwinkle TM, Berrin SJ, Sherman SA, Artavia K, Malcarne VL, & Chambers HG. (2006). The PedsQL in pediatric cerebral palsy: Reliability, validity, and sensitivity of the generic core scales and cerebral palsy module. Developmental Medicine and Child Neurology48(6):442-9. Portage Guide to Early Education (PGEE) Portage Guide to Early Education. (1967). CESA 5, Wisconsin.  Pediatric Outcomes Data Collection Inventory (PODCI)  Daltroy, L. H., Liang, M. H., Fossel, A. H., & Goldberg, M. J. (1998). The POSNA pediatric musculoskeletal functional health questionnaire: Report on reliability, validity, and sensitivity to change. Journal of Pediatric Orthopaedics, 18(5), 561-571.  Physician's rating scale (PRS)   Maathuis K.G., van der Schans C.P., van Iperen A., Rietman H.S., Geertzen J.H. (2005).Gait in children with cerebral palsy: observer reliability of Physician Rating Scale and Edinburgh Visual Gait Analysis Interval Testing scale.  Journal of Pediatric Orthopedic.;25(3):268-72.  Pediatric Volitional Questionnaire  (PVQ)  Basu, S., Kafkes, A., Geist, R., & Kielhofner, G. (2002). Pediatric Volitional Questionnaire. Chicago: Model of Human Occupation Clearinghouse 212  Name (Abbreviation)  Reference                                                 (Continued) Quality of Life Instrument for People With Developmental Disabilities-children version (QOLDD) Brown I. , Raphael D., & Renwick R. (1997). Quality of Life Instrument for People With Developmental Disabilities-children version Toronto, Canada: Centre for Health Promotion.   Quality of Upper Extremity Skills Test  (QUEST) Horsman J, Furlong W, Feeny D, Torrance G. (2003).The health utilities index (HUI): Concepts, measurement properties and applications. Health Qual Life Outcomes 16;1:54.  The Revised Children's Manifest Anxiety Scale  (RCMAS) Lee S. W. "The validity of the revised children's manifest anxiety scale for children and adolescents". (1986). ETD collection for University of Nebraska - Lincoln. Reynell Developmental Language Scales (REYDLS) Edwards et al. (1997). Reynell Developmental Language Scales. The University of Reading Edition. Stanford-Binet Intelligence Test (SBIQ) Roid, G. & Barram, R. (2004). Essentials of Stanford-Binet Intelligence Scales (SB5) Assessment. Hoboken, New Jersey: John Wiley & Sons, Inc. Strength and Difficulties Questionnaire (SDQ) Goodman R. (1997). The Strengths and Difficulties Questionnaire: A Research Note. Journal of Child Psychology and Psychiatry, 38, 581-586 School Function Assessment  (SFA) Coster W, Deeney TA, Haltiwanger J, Haley SM. (1998) School Function Assessment user’s manual. San Antonia,TX: Therapy Skill Builders.  Self-Perception Profile for College Students (SPPCS)  Neemann J & Harter S (1986) Manual for the Self-perception Profile for College Students. Unpublished manuscript, University of Denver, CO: University of Denver. TNO-AZL questionnaire for Children's HRQOL (TACQOL)  Verrips GH, Vogels AGC, Verloove-Vanhorick SP, Fekkes M, Koopman HM, Kamphuis RP, Theunissen NCM, Wit JM. (1998)Health-Related Quality of Life Measure for Children - the TACQOL. Journal of Applied Therapeutics; 1/4: 357-360 Toddler Infant Motor Evaluation  (TIME)  Bolen LM. Review of the Toddler and Infant Motor Evaluation. In Plake B, Impara J, eds. The Fourteenth Mental Measurements Yearbook. Lincoln, Nebraska: The University of Nebraska Press; 2001:1278-1280. Test of Nonverbal Intelligence, 2nd edition  (TONI-2) Brown, L., Sherbenou, R.J., & Johnsen, S.K. (1990). Test of Nonverbal Intelligence, Second Edition Examiner’s Manual. Austin, TX: Pro-Ed. Test of Nonverbal Intelligence-3 (TONI-3) Brown, L., Sherbenou, R.J., & Johnsen, S.K. (1997). Test of Nonverbal Intelligence, Third Edition Examiner’s Manual. Austin, TX: Pro-Ed. 213  Name (Abbreviation)  Reference                                                 (Continued) Test for Reception of Grammar (TRG) Bishop D. V. M. 2003. Test for reception of grammar: TROG. Pearson Assessment Vineland Adaptive Behavior Scales (VABS) Sparrow, S.S., Balla, D., and Cicchetti, D.V. 1984. Vineland adaptive behavior scales–Survey Edition. Circle Pines, MN: American Guidance Service.  WeeFIM (WEEFIM)   Guide for the Functional Independence Measure for Children (WeeFIM) of the Uniform Data Set for Medical Rehabilitation. Buffalo, NY: State University of New York at Buffalo, 1993.   The Wechsler Intelligence Scale for Children-III (WISC-III)   Wechsler, D. (1991). The Wechsler intelligence scale for children—third edition. San Antonio, TX: The Psychological Corporation.  Wechsler Preschool and Primary Scale of Intelligence (WPPSI) Wechsler, D. (1989). Wechsler Preschool and Primary Scale of Intelligence – Revised. San Antonio, TX: The Psychological Corporation.  Youth Quality of Life Instrument Research Version  (YQOL-R) Edwards TC, Huebner CE, Connell FA, & Patrick DL. (2002). Adolescent quality of life, part I: conceptual and measurement model. Journal of Adolescense, 25(3), 275-286.          214  F.2 Distribution of Content of Multiple-Item Measures at the Chapter Level, n=78 This section of Appendix F shows the distribution of unique concepts included in multiple-item measures at the chapter level by ICF-CY components, including body functions, activities and participation and environmental factors.   Distribution of Content of Multiple-Item Measures                                   (Continued) at the Chapter Level, n=78  ICF-CY Body Functions chapters   Measures* b1 b2 b3 b4 b5 b6 b7 b8 ACRS 9 0 0 0 0 0 0 0 AMPS 4 0 0 1 0 0 0 0 ASK 0 0 0 1 0 0 0 0 BFMF 0 0 0 0 0 0 0 0 BOTMP 0 0 0 0 0 0 2 0 BRIEF 4 0 0 0 0 0 0 0 BSID-II 3 0 0 0 0 0 0 0 CAPE 0 0 0 0 0 0 0 0 CAS 1 0 0 0 0 0 0 0 CBCL 23 4 0 0 3 0 1 0 CDI 0 0 0 0 0 0 0 0 CHQ 11 5 2 0 1 1 1 0 CI 1 0 0 0 0 0 0 0 CMMS 1 0 0 0 0 0 0 0 COPM 0 0 0 0 0 0 0 0 CPCHILD 1 2 0 0 0 0 0 0 CPQOL 5 2 0 0 0 0 1 0  215   Distribution of Content of Multiple-Item Measures                                   (Continued) at the Chapter Level, n=78  ICF-CY Body Functions chapters   Measures* b1 b2 b3 b4 b5 b6 b7 b8 CQ 1 2 1 0 0 0 0 0 CRPBI 0 0 0 0 0 0 0 0 CSS 0 0 0 0 0 0 0 0 DIS 1 0 0 0 1 0 0 1 DMQ 0 0 0 0 0 0 0 0 DTVP2 3 0 0 0 0 0 0 0 FAC 0 0 0 0 0 0 0 0 FAQ 0 0 0 1 0 0 1 0 FES 0 0 0 0 0 0 0 0 FIM 5 0 1 0 1 0 0 0 FLACC 0 1 0 0 0 0 0 0 FSS 0 0 0 0 0 0 0 0 GGI 1 0 0 0 0 0 1 0 GHQ 10 1 0 0 0 0 1 0 GMC 3 0 0 0 0 0 0 0 GMDS 2 1 1 0 0 0 1 0 GMFM 0 0 0 0 0 0 3 0 GMPM 0 0 0 0 0 0 3 0 HSPPC-CP 3 0 0 1 0 0 0 0 HUI3 5 7 1 0 0 0 0 0 IMPACTFS 0 0 0 0 0 0 0 0 JTHF 0 0 0 0 0 0 0 0 216   Distribution of Content of Multiple-Item Measures                                   (Continued) at the Chapter Level, n=78  ICF-CY Body Functions chapters   Measures* b1 b2 b3 b4 b5 b6 b7 b8 KSCREEN 6 0 0 1 0 0 0 0 LAQ-CP 0 0 0 0 0 0 0 0 LEITER-LIPS 1 0 0 0 0 0 0 0 LEITER-R 1 0 0 0 0 0 0 0 LHQ 0 0 0 0 0 0 0 0 LIVRE 0 0 0 0 0 0 0 0 LOC 1 0 0 0 0 0 0 0 MABC 1 1 0 0 0 0 0 0 MADL 0 0 0 0 0 0 0 0 MAULF 0 0 0 0 0 0 0 0 MobQues 0 0 0 0 0 0 0 0 MoVra 0 0 0 0 0 0 0 0 OSA-18 6 1 0 1 2 1 0 0 PAQ-A 0 0 0 0 0 0 0 0 PDMS-2 0 0 0 0 0 0 2 0 PEDI 12 1 0 0 0 0 0 0 PEDSQL 4 1 0 1 0 0 0 0 PGEE 1 1 0 0 0 0 0 0 PODCI 5 1 0 0 0 0 0 0 PRS 0 0 0 0 0 0 1 0 PVQ 3 0 0 0 0 0 0 0 QOLDD 0 0 0 0 0 0 0 0 217   Distribution of Content of Multiple-Item Measures                                   (Continued) at the Chapter Level, n=78  ICF-CY Body Functions chapters   Measures* b1 b2 b3 b4 b5 b6 b7 b8 QUEST 1 0 0 0 0 0 4 0 RCMAS 5 0 0 0 0 0 0 0 REYDLS 0 0 0 0 0 0 0 0 SBIQ 1 0 0 0 0 0 0 0 SDQ 10 0 0 0 0 0 0 0 SFA 3 0 0 0 0 0 0 0 SPPCS 5 0 0 1 0 0 0 0 TACQOL 12 5 0 0 1 0 0 0 TIME 3 1 0 0 0 0 1 0 TONI-2 3 0 0 0 0 0 0 0 TONI-3 4 0 0 0 0 0 0 0 TRG 0 0 0 0 0 0 0 0 VABS 7 0 0 0 0 0 0 0 WEEFIM 1 0 0 0 0 0 0 0 WISC-III 8 0 0 0 0 0 0 0 WPPSI 2 0 0 0 0 0 0 0 YQOL-R 11 0 0 0 0 0 0 0 Total  214 37 6 8 9 2 23 1 *Full names provided in Appendix F. Section F1. Complete list of references provided in Appendix F Section 1 ICF-CY; International Classification of Functioning children and youth version b1; Mental functions,  b2; Sensory functions and pain, b3; Voice and speech functions, b4; Functions of the cardiorespiratory, haematological, immunological systems, b5; Functions of the digestive, metabolic, endocrine 218  systems, b6; Genitourinary reproductive functions, b7; Neuromusculoskeletal movement-related functions, b8; Functions of skin and related structures    Distribution of Content of Multiple-Item Measures                                   (Continued) at the Chapter Level, n=78  ICF-CY Activities and Participation chapters Measures* d1 d2 d3 d4 d5 d6 d7 d8 d9 ACRS 2 2 0 0 0 0 2 3 1 AMPS 0 0 0 5 0 0 0 0 0 ASK 1 0 0 14 7 2 0 0 1 BFMF 0 0 0 3 0 0 0 0 0 BOTMP 0 0 0 5 0 0 0 0 0 BRIEF 1 0 0 0 0 0 0 0 0 BSID-II 0 0 3 2 3 1 1 1 2 CAPE 2 0 0 3 0 5 0 4 9 CAS 0 0 0 0 0 0 0 0 0 CBCL 0 1 2 0 1 2 5 0 1 CDI 2 0 0 0 0 0 0 0 0 CHQ 1 4 2 7 4 1 3 2 3 CI 0 0 0 0 0 0 0 0 0 CMMS 0 0 0 0 0 0 0 0 0 COPM 0 0 0 5 5 4 0 9 7 CPCHILD 0 0 2 7 13 0 0 2 4 CPQOL 1 0 1 2 4 0 5 4 4 CQ 0 0 1 5 6 0 1 3 1  219   Distribution of Content of Multiple-Item Measures                                   (Continued) at the Chapter Level, n=78  ICF-CY Activities and Participation chapters Measures* d1 d2 d3 d4 d5 d6 d7 d8 d9 CRPBI 0 0 0 0 0 0 1 0 0 CSS 0 1 0 0 0 0 0 0 0 DIS 0 0 0 0 1 2 0 0 0 DMQ 2 0 0 0 0 0 2 0 0 DTVP2 1 0 0 0 0 0 0 0 0 FAC 0 0 0 1 0 0 0 0 0 FAQ 0 0 0 15 0 0 0 0 0 FES 1 2 1 0 0 0 0 1 2 FIM 3 0 4 5 8 0 1 1 0 FLACC 0 0 0 0 0 0 0 0 0 FSS 0 0 0 0 0 0 0 0 0 GGI 0 0 0 0 0 0 0 0 0 GHQ 0 0 0 0 0 0 0 0 0 GMC 0 0 0 1 0 0 0 0 0 GMDS 0 0 0 2 1 0 0 1 0 GMFM 0 0 0 22 0 0 0 0 0 GMPM 0 0 0 0 0 0 0 0 0 HSPPC-CP 0 0 0 1 0 0 1 1 0 HUI3 2 0 0 4 0 0 0 0 0 IMPACTFS 1 0 0 0 0 0 1 0 0 JTHF 0 0 0 1 0 0 0 0 0 KSCREEN 0 0 0 0 0 0 3 0 0 220   Distribution of Content of Multiple-Item Measures                                   (Continued) at the Chapter Level, n=78  ICF-CY Activities and Participation chapters Measures* d1 d2 d3 d4 d5 d6 d7 d8 d9 LAQ-CP 0 0 0 8 4 0 1 1 1 LEITER-LIPS 0 0 0 0 0 0 0 0 0 LEITER-R 0 0 0 0 0 0 0 0 0 LHQ 0 0 4 3 5 3 2 3 4 LIVRE 1 0 1 1 1 0 0 0 1 LOC 0 0 0 0 0 0 0 0 0 MABC 0 0 0 2 0 0 0 0 0 MADL 0 0 0 0 1 0 0 0 0 MAULF 0 0 0 4 0 0 0 0 0 MobQues 0 0 0 2 0 0 0 0 0 MoVra 0 0 0 2 0 0 0 0 0 OSA-18 0 0 0 0 0 0 0 0 0 PAQ-A 0 0 0 0 0 0 0 0 0 PDMS-2 0 0 0 4 0 0 0 0 0 PEDI 3 3 4 24 16 2 1 4 1 PEDSQL 1 0 0 3 1 1 1 1 1 PGEE 1 0 1 1 0 0 1 0 0 PODCI 0 0 0 21 3 1 1 1 4 PRS 0 0 0 0 0 0 0 0 0 PVQ 0 0 0 0 0 0 0 1 0 QOLDD 0 0 1 0 0 0 1 0 0 QUEST 0 0 0 2 0 0 0 0 0 221   Distribution of Content of Multiple-Item Measures                                   (Continued) at the Chapter Level, n=78  ICF-CY Activities and Participation chapters Measures* d1 d2 d3 d4 d5 d6 d7 d8 d9 RCMAS 0 0 0 0 0 0 0 0 0 REYDLS 0 0 3 0 0 0 0 0 0 SBIQ 5 0 0 1 0 0 0 0 0 SDQ 0 1 0 0 0 2 5 2 1 SFA 1 6 1 7 7 0 3 1 1 SPPCS 0 0 0 0 0 0 4 1 0 TACQOL 3 0 0 6 5 0 2 3 2 TIME 0 0 0 1 0 0 1 0 0 TONI-2 0 0 0 0 0 0 0 0 0 TONI-3 0 0 0 0 0 0 0 0 0 TRG 1 0 0 0 0 0 0 0 0 VABS 5 2 7 9 9 1 5 4 2 WEEFIM 1 0 3 5 7 0 1 0 0 WISC-III 4 0 0 0 0 0 0 0 0 WPPSI 5 0 1 0 0 0 0 0 0 YQOL-R 1 2 0 0 0 0 2 1 1 Total 52 24 42 216 112 27 57 55 54 *Full names provided in Appendix F. Section F1. Complete list of references provided in Appendix F Section 1 d1; Learning and applying knowledge, d2;General tasks and demands, d3. Communication, d4; Mobility, d5; Self-care, d6; Domestic life, d7; Interpersonal interactions and relationships, d8; Major life areas, d9; Community, social and civic life    222   Distribution of Content of Multiple-Item Measures                                   (Continued) at the Chapter Level, n=78  ICF-CY Environmental Factors chapters Measures* e1   e2 e3 e4 e5 ACRS 0 0 0 0 0 AMPS 0 0 0 0 0 ASK 0 0 0 0 0 BFMF 1 0 1 0 0 BOTMP 0 0 0 0 0 BRIEF 0 0 0 0 0 BSID-II 0 0 0 0 0 CAPE 0 0 0 0 0 CAS 0 0 0 0 0 CBCL 0 0 0 0 0 CDI 0 0 0 0 0 CHQ 0 0 2 1 1 CI 0 0 0 0 0 CMMS 0 0 0 0 0 COPM 0 0 0 0 0 CPCHILD 1 0 1 0 0 CPQOL 5 0 1 3 1 CQ 1 0 2 0 0 CRPBI 0 0 0 0 0 CSS 0 0 0 0 0 DIS 0 0 0 1 0 DMQ 0 0 0 0 0 223   Distribution of Content of Multiple-Item Measures                                   (Continued) at the Chapter Level, n=78  ICF-CY Environmental Factors chapters Measures* e1   e2 e3 e4 e5 DTVP2 0 0 0 0 0 FAC 0 0 1 0 0 FAQ 0 0 0 0 0 FES 0 0 0 0 0 FIM 0 0 0 0 0 FLACC 0 0 0 0 0 FSS 0 0 0 0 0 GGI 0 0 0 0 0 GHQ 0 0 0 0 0 GMC 0 0 0 0 0 GMDS 0 0 0 0 0 GMFM 0 0 0 0 0 GMPM 0 0 0 0 0 HSPPC-CP 0 0 0 0 0 HUI3 3 0 1 0 0 IMPACTFS 0 0 0 0 1 JTHF 0 0 0 0 0 KSCREEN 1 0 0 1 0 LAQ-CP 6 0 4 1 4 LEITER-LIPS 0 0 0 0 0 LEITER-R 0 0 0 0 0 LHQ 1 0 0 0 0 224   Distribution of Content of Multiple-Item Measures                                   (Continued) at the Chapter Level, n=78  ICF-CY Environmental Factors chapters Measures* e1   e2 e3 e4 e5 LIVRE 0 0 0 0 0 LOC 0 0 0 0 0 MABC 0 0 0 0 0 MADL 0 0 0 0 0 MAULF 0 0 0 0 0 MobQues 0 0 0 0 0 MoVra 0 0 0 0 0 OSA-18 0 0 0 0 0 PAQ-A 0 0 0 0 0 PDMS-2 0 0 0 0 0 PEDI 1 0 1 0 0 PEDSQL 0 0 1 1 1 PGEE 0 0 0 0 0 PODCI 1 1 2 1 0 PRS 0 0 0 0 0 PVQ 0 0 0 0 0 QOLDD 3 0 4 1 2 QUEST 0 0 0 0 0 RCMAS 0 0 0 0 0 REYDLS 0 0 0 0 0 SBIQ 0 0 0 0 0 SDQ 0 0 0 1 0 225   Distribution of Content of Multiple-Item Measures                                   (Continued) at the Chapter Level, n=78  ICF-CY Environmental Factors chapters Measures* e1   e2 e3 e4 e5 SFA 5 0 0 0 2 SPPCS 0 0 0 0 0 TACQOL 0 0 0 1 0 TIME 0 0 0 0 0 TONI-2 0 0 0 0 0 TONI-3 0 0 0 0 0 TRG 0 0 0 0 0 VABS 0 0 0 0 1 WEEFIM 0 0 0 0 0 WISC-III 0 0 0 0 0 WPPSI 0 0 0 0 0 YQOL-R 1 0 1 2 0  Total 30 1 22 14 13 *Full names provided in Appendix F. Section F1. Complete list of references provided in Appendix F Section 1  e1; Products and technology, e2; Natural environment and human-made changes to environment,  e3; Support and relationships, e4; Attitudes, e5; Services, systems and policies      226  Appendix G  ICF-CY Categories Included in Each Multiple-Item Measure, n=78 This appendix includes the detailed ICF-CY content of each multiple-item measure, the list of all ICF-CY categories identified in each measure is provided in the tables.  Summary table for The Abbreviated Conners Rating Scale (ACRS) Codes Category name Frequency of appearance in the measure b125 Dispositions and intra-personal functions 1 b1261 Agreeableness 2 b1263 Psychic stability 1 b1304 Impulse control 3 b140 Attention functions 4 b1400 Sustaining attention 1 b144 Memory functions 1 b1470 Psychomotor control 7 b1721 Complex calculation 1 d145 Learning to write 1 d166 Reading 1 d250 Managing one’s own behaviour 1 d2501 Responding to demands 1 d7202 Regulating behaviours within interactions 1 d7601 Child-parent relationships 1 d820 School education 1 d8201 Maintaining educational program 1 d880 Engagement in play 1 d920 Recreation and leisure 1 Total   31   227  Summary table for Assessment of Motor and Process Skills (AMPS) Codes Category name Frequency of appearance in the measure b1 Mental functions 1 b1641 Organization and planning 2 b1642 Time management 1 b1643 Cognitive flexibility 1 b4550 General physical endurance 1 d415 Maintaining a body position 1 d430 Lifting and carrying objects 1 d440 Fine hand use 1 d4401 Grasping 1 d455 Moving around 1 Total   11   Summary table for Activities Scale for Kids  (ASK)                                                                        (Continued)                                                                  Codes Category name Frequency of appearance in the measure b4550 General physical endurance 1 d170 Writing 1 d4100 Lying down 2 d4103 Sitting 4 d4104 Standing 1 d4154 Maintaining a standing position 1 d420 Transferring oneself 2 d4301 Carrying in the hands 2 d4452 Reaching 1 d450 Walking 1 228  Summary table for Activities Scale for Kids  (ASK)                                                                        (Continued)                                                                  Codes Category name Frequency of appearance in the measure d4502 Walking on different surfaces 2 d4503 Walking around obstacles 1 d4551 Climbing 2 d460 Moving around in different locations 1 d4600 Moving around within the home 1 d4602 Moving around outside the home and other buildings 1 d5101 Washing whole body 1 d5201 Caring for teeth 1 d530 Toileting 1 d540 Dressing 1 d5400 Putting on clothes 2 d5402 Putting on footwear 1 d570 Looking after one’s health 1 d6300 Preparing simple meals 1 d640 Doing housework 1 d9201 Sports 2 Total   36        229  Summary table for Bimanual fine motor function (BFMF) Codes Category name Frequency of appearance in the measure d440 Fine hand use 5 d4401 Grasping 7 d445 Hand and arm use 3 e115 Products and technology for personal use in daily living 1 e3 Support and relationships 2 Total   18   Summary table for Bruininks Oseretsky Test of Motor Proficiency  (BOTMP) Codes Category name Frequency of appearance in the measure b730 Muscle power functions 1 b760 Control of voluntary movement functions 1 d415 Maintaining a body position 1 d440 Fine hand use 2 d4402 Manipulating 1 d445 Hand and arm use 1 d4552 Running 1 Total   8       230  Summary table for Behaviour Rating Inventory of Executive Functioning  (BRIEF) Codes Category name Frequency of appearance in the measure b1401 Shifting attention 1 b144 Memory functions 1 b1521 Regulation of emotion 2 b1641 Organization and planning 2 d155 Acquiring skills 1 nc not covered 1 Total   8   Summary table for The Bayley Scales of Infant Development (2nd edn;)  (BSID-II) Codes Category name Frequency of appearance in the measure b117 Intellectual functions 1 b1301 Motivation 1 b152 Emotional functions 1 d3 Communication 1 d310 Communicating with - receiving - spoken messages 1 d330 Speaking 1 d4 Mobility 2 d440 Fine hand use 1 d5 Self-care 1 d570 Looking after one’s health 1 d571 Looking after one’s safety 1 d6 Domestic life 1 d7 Interpersonal interactions and relationships 1 d815 Preschool education 1 d9 Community, social and civic life 1 d920 Recreation and leisure 1 Total   17   231  Summary table for Children's Assessment of Participation and Enjoyment  (CAPE) Codes Category name Frequency of appearance in the measure d1630 Pretending 1 d170 Writing 2 d440 Fine hand use 1 d4402 Manipulating 1 d480 Riding animals for transportation 1 d6200 Shopping 1 d630 Preparing meals 1 d640 Doing housework 1 d6505 Taking care of plants, indoors and outdoors 1 d6506 Taking care of animals 2 d820 School education 1 d8201 Maintaining educational programme 1 d850 Remunerative employment 1 d855 Non-remunerative employment 1 d9100 Informal associations 2 d920 Recreation and leisure 6 d9200 Play 5 d9201 Sports 11 d9202 Arts and culture 9 d9203 Crafts 1 d9204 Hobbies 1 d9205 Socializing 5 d9300 Organized religion 1 Total   57  232   Summary table for Cognitive Assessment System (CAS) Codes Category name Frequency of appearance in the measure b163 Basic cognitive functions 1 Total   1   Summary table for Child Behaviour Checklist  (CBCL)                                                                        (Continued) Codes Category name Frequency of appearance in the measure b122 Global psychosocial functions 3 b125 Dispositions and intra-personal functions 4 b1250 Adaptability 2 b1255 Approachability 1 b126 Temperament and personality functions 10 b1260 Extraversion 1 b1261 Agreeableness 2 b1263 Psychic stability 2 b1264 Openness to experience 3 b1266 Confidence 2 b130 Energy and drive functions 1 b1300 Energy level 1 b134 Sleep functions 4 b1340 Amount of sleep 1 b1342 Maintenance of sleep 1 b1400 Sustaining attention 1 b147 Psychomotor functions 1 b1470 Psychomotor control 1 233  Summary table for Child Behaviour Checklist  (CBCL)                                                                        (Continued) Codes Category name Frequency of appearance in the measure b1471 Quality of psychomotor functions 1 b152 Emotional functions 7 b1520 Appropriateness of emotion 3 b1521 Regulation of emotion 6 b1522 Range of emotion 3 b2800 Generalized pain 1 b2801 Pain in body part 1 b28010 Pain in head and neck 1 b28012 Pain in stomach or abdomen 1 b3 Voice and speech functions 1 b5106 Vomiting 1 b525 Defecation functions 2 b5350 Sensation of nausea 1 b760 Control of voluntary movement functions 1 d250 Managing one’s own behaviour 5 d3501 Sustaining a conversation 1 d550 Eating 2 d650 Caring for household objects 2 d6506 Taking care of animals 1 d7104 Social cues in relationships 1 d7105 Physical contact in relationships 1 d7202 Regulating behaviours within interactions 3 d7203 Interacting according to social rules 3 d7504 Informal relationships with peers 1 d920 Recreation and leisure 1 234  Summary table for Child Behaviour Checklist  (CBCL)                                                                        (Continued) Codes Category name Frequency of appearance in the measure nc not covered 2 pf Personal Factors 2 s220 Structure of eyeball 1 s810 Structure of areas of skin 1 Total   98  Summary table for The MacArthur Communicative Development Inventory (CDI) Codes Category name Frequency of appearance in the measure d133 Acquiring language 1 d145 Learning to write 1 Total   2  Summary table for Child Health Questionnaire (CHQ)                                                                      (Continued) Codes Category name Frequency of appearance in the measure b122 Global psychosocial functions 1 b1300 Energy level 1 b1302 Appetite 1 b134 Sleep functions 3 b1341 Onset of sleep 1 b1400 Sustaining attention 1 b1470 Psychomotor control 1 b152 Emotional functions 14 b1521 Regulation of emotion 2 b1800 Experience of self 3 b1801 Body image 1 235  Summary table for Child Health Questionnaire (CHQ)                                                                      (Continued) Codes Category name Frequency of appearance in the measure b2 Sensory functions and pain 2 b280 Sensation of pain 2 b28010 Pain in head and neck 2 b28011 Pain in chest 1 b28012 Pain in stomach or abdomen 1 b320 Articulation functions 1 b3300 Fluency of speech 1 b525 Defecation functions 2 b6202 Urinary continence 1 b760 Control of voluntary movement functions 1 d110 Watching 1 d2 General tasks and demands 2 d220 Undertaking multiple tasks 3 d240 Handling stress and other psychological demands 2 d250 Managing one’s own behaviour 1 d350 Conversation 1 d355 Discussion 1 d4105 Bending 2 d420 Transferring oneself 2 d4300 Lifting 1 d4500 Walking short distances 2 d4551 Climbing 2 d4552 Running 1 d460 Moving around in different locations 2 d510 Washing oneself 1 236  Summary table for Child Health Questionnaire (CHQ)                                                                      (Continued) Codes Category name Frequency of appearance in the measure d530 Toileting 1 d540 Dressing 1 d550 Eating 2 d640 Doing housework 1 d710 Basic interpersonal interactions 1 d750 Informal social relationships 2 d760 Family relationships 2 d820 School education 3 d8201 Maintaining educational programme 9 d920 Recreation and leisure 2 d9201 Sports 4 d9205 Socializing 8 e310 Immediate family 3 e320 Friends 3 e4 Attitudes 1 e5800 Health services 3 nc not covered 14 nd-a&p not definable-activity and participation 2 nd-bf not definable-body functions 1 nd-gh not definable-general health 15 nd-hc not definable-health condition 1 nd-ph not definable-physical health 2 nd-qol not definable quality of life 1 pf Personal Factors 4 Total   153 237   Summary table for Coping Inventory (CI)  Codes Category name Frequency of appearance in the measure b1250 Adaptability 1 nc not covered 1 pf Personal Factors 1 Total   3     Summary table for Columbia Mental Maturity Scale (CMMS) Codes Category name Frequency of appearance in the measure b117 Intellectual functions 1 Total   1  Summary table for Canadian Occupational Performance Measure  (COPM)                                          (Continued) Codes Category name Frequency of appearance in the measure d4 Mobility 1 d420 Transferring oneself 1 d4600 Moving around within the home 1 d4602 Moving around outside the home and other buildings 1 d470 Using transportation 1 d5 Self-care 1 d510 Washing oneself 1 d520 Caring for body parts 1 d540 Dressing 1 d550 Eating 1 238  Summary table for Canadian Occupational Performance Measure  (COPM)                                          (Continued) Codes Category name Frequency of appearance in the measure d6200 Shopping 1 d630 Preparing meals 1 d640 Doing housework 2 d6400 Washing and drying clothes and garments 1 d8 Major life areas 1 d820 School education 1 d8201 Maintaining educational programme 1 d8202 Progressing in educational programme 1 d8450 Seeking employment 1 d8451 Maintaining a job 1 d855 Non-remunerative employment 1 d860 Basic economic transactions 1 d880 Engagement in play 1 d920 Recreation and leisure 4 d9200 Play 1 d9201 Sports 1 d9202 Arts and culture 1 d9203 Crafts 1 d9204 Hobbies 1 d9205 Socializing 4 Total   37     239   Summary table for Caregiver Priorities and Child Health Index of                                                     (Continued) Life with Disabilities   (CPCHILD)                                                                                                                                      Codes Category name Frequency of appearance in the measure b152 Emotional functions 5 b2 Sensory functions and pain 1 b280 Sensation of pain 1 d3 Communication 2 d310 Communicating with - receiving - spoken messages 1 d4100 Lying down 2 d4104 Standing 1 d4153 Maintaining a sitting position 1 d420 Transferring oneself 3 d4200 Transferring oneself while sitting 2 d4600 Moving around within the home 1 d4602 Moving around outside the home and other buildings 1 d510 Washing oneself 2 d5100 Washing body parts 1 d5201 Caring for teeth 2 d5202 Caring for hair 2 d530 Toileting 4 d540 Dressing 1 d5400 Putting on clothes 2 d5401 Taking off clothes 2 d5402 Putting on footwear 1 d550 Eating 2 240  Summary table for Caregiver Priorities and Child Health Index of                                                     (Continued) Life with Disabilities   (CPCHILD)                                                                                                                                      Codes Category name Frequency of appearance in the measure d560 Drinking 1 d5702 Maintaining one’s health 2 d820 School education 1 d8800 Solitary play 1 d8803 Shared cooperative play 1 d920 Recreation and leisure 3 d9201 Sports 1 d9202 Arts and culture 1 d9205 Socializing 2 e1101 Drugs 1 e3 Support and relationships 1 nc not covered 1 nd-a&p not definable-activity and participation 1 nd-gh not definable-general health 2 nd-qol not definable quality of life 2 Total   61        241   Summary table for Quality of life of children with CP (CPQOL)                                             (Continued) Codes Category name Frequency of appearance in the measure b126 Temperament and personality functions 1 b134 Sleep functions 1 b152 Emotional functions 6 b180 Experience of self and time functions 1 b1801 Body image 1 b2 Sensory functions and pain 1 b280 Sensation of pain 2 b761 Spontaneous movements 1 d1 Learning and applying knowledge 1 d3 Communication 3 d4 Mobility 1 d445 Hand and arm use 2 d530 Toileting 1 d540 Dressing 1 d550 Eating 1 d560 Drinking 1 d710 Basic interpersonal interactions 1 d720 Complex interpersonal interactions 1 d7400 Relating with persons in authority 2 d7504 Informal relationships with peers 2 d7602 Sibling relationships 1 d820 School education 1 d8201 Maintaining educational programme 1 242  Summary table for Quality of life of children with CP (CPQOL)                                             (Continued) Codes Category name Frequency of appearance in the measure d8800 Solitary play 1 d8803 Shared cooperative play 1 d910 Community life 1 d920 Recreation and leisure 2 d9201 Sports 1 d9205 Socializing 1 e115 Products and technology for personal use in daily living 5 e1201 Assistive products and technology for personal indoor and outdoor mobility and transportation 4 e130 Products and technology for education 1 e150 Design, construction and building products and technology of buildings for public use 1 e1500 Design, construction and building products and technology for entering and exiting buildings for public use 3 e3 Support and relationships 2 e410 Individual attitudes of immediate family members 1 e425 Individual attitudes of acquaintances, peers, colleagues, neighbours and community members 3 e430 Individual attitudes of people in positions of authority 1 e5800 Health services 1 nc not covered 3 nd-bf not definable-body functions 1 nd-hc not definable-health condition 1 nd-ph not definable-physical health 1 243  Summary table for Quality of life of children with CP (CPQOL)                                             (Continued) Codes Category name Frequency of appearance in the measure nd-qol not definable quality of life 1 pf Personal Factors 4 Total   74  Summary table for Caregiver Questionnaire (CQ)                                                                                (Continued) Codes Category name Frequency of appearance in the measure b130 Energy and drive functions 1 b2 Sensory functions and pain 3 b280 Sensation of pain 3 b320 Articulation functions 2 d3 Communication 1 d410 Changing basic body position 4 d4100 Lying down 2 d415 Maintaining a body position 1 d4153 Maintaining a sitting position 1 d420 Transferring oneself 1 d5 Self-care 1 d510 Washing oneself 2 d530 Toileting 3 d5400 Putting on clothes 2 d5401 Taking off clothes 1 d550 Eating 1 d710 Basic interpersonal interactions 1 244  Summary table for Caregiver Questionnaire (CQ)                                                                                (Continued) Codes Category name Frequency of appearance in the measure d820 School education 1 d8800 Solitary play 1 d8803 Shared cooperative play 2 d920 Recreation and leisure 2 e1101 Drugs 1 e3 Support and relationships 2 e325 Acquaintances, peers, colleagues, neighbours and community members 1 nc not covered 4 nd-gh not definable-general health 1 nd-qol not definable quality of life 1 pf Personal Factors 1 Total   47  Summary table for The Children's Report of Parental Behavior Inventory  (CRPBI) Codes Category name Frequency of appearance in the measure d7600 Parent-child relationships 4 Total   4    Summary table for Coping with Stress Scale (CSS)  Codes     d2402 Handling crisis 1 Total   1 245     Summary table for Drooling Impact Scale  (DIS)  Codes Category name Frequency of appearance in the measure b152 Emotional functions 1 b510 Ingestion functions 4 b840 Sensation related to the skin 1 d520 Caring for body parts 1 d6400 Washing and drying clothes and garments 1 d650 Caring for household objects 4 e410 Individual attitudes of immediate family members 2 nd-hc not definable-health condition 1 Total   15  Summary table for Dimension of Mastery Questionnaire (DMQ)  Codes Category name Frequency of appearance in the measure d131 Learning through actions with objects 1 d155 Acquiring skills 2 d740 Formal relationships 1 d7504 Informal relationships with peers 1 pf Personal Factors 1 Total   6       246   Summary table for Developmental Test of Visual Perception 2nd ed (DTVP-2) Codes Category name Frequency of appearance in the measure b1470 Psychomotor control 1 b1471 Quality of psychomotor functions 1 b1565 Visuospatial perception 5 d130 Copying 1 Total   8    Summary table for Functional Ambulatory Category (FAC) Codes Category name Frequency of appearance in the measure d450 Walking 6 e340 Personal care providers and personal assistants 2 nc not covered 1 Total   9  Summary table for Gillette Functional Assessment Questionnaire (FAQ)                                              (Continued) Codes Category name Frequency of appearance in the measure b4550 General physical endurance 2 b7603 Supportive functions of arm or leg 1 d4106 Shifting the body’s centre of gravity 2 d430 Lifting and carrying objects 1 d4301 Carrying in the hands 1 d4351 Kicking 2 d450 Walking 6 247  Summary table for Gillette Functional Assessment Questionnaire (FAQ)                                              (Continued) Codes Category name Frequency of appearance in the measure d4500 Walking short distances 4 d4501 Walking long distances 1 d4502 Walking on different surfaces 3 d4503 Walking around obstacles 1 d4551 Climbing 7 d4552 Running 4 d4553 Jumping 4 d465 Moving around using equipment 1 d470 Using transportation 1 d4750 Driving human-powered transportation 2 Total   43               248  Summary table for Family Environment Scale (FES) Codes Category name Frequency of appearance in the measure d163 Thinking 1 d2 General tasks and demands 1 d240 Handling stress and other psychological demands 1 d3 Communication 1 d8 Major life areas 1 d920 Recreation and leisure 1 d930 Religion and spirituality 1 nc not covered 5 pf Personal Factors 1 Total   13  Summary table for Functional Independence Measure  (FIM)                                                            (Continued) Codes Category name Frequency of appearance in the measure b114 Orientation functions 1 b1250 Adaptability 1 b140 Attention functions 1 b144 Memory functions 1 b152 Emotional functions 1 b320 Articulation functions 1 b5105 Swallowing 1 d166 Reading 1 d170 Writing 1 d175 Solving problems 1 d310 Communicating with - receiving - spoken messages 1 d315 Communicating with - receiving - nonverbal  1 249  Summary table for Functional Independence Measure  (FIM)                                                            (Continued) Codes Category name Frequency of appearance in the measure d330 Speaking 1 d335 Producing nonverbal messages 1 d420 Transferring oneself 4 d450 Walking 1 d4551 Climbing 1 d4602 Moving around outside the home and other buildings 1 d465 Moving around using equipment 1 d5101 Washing whole body 1 d520 Caring for body parts 1 d530 Toileting 1 d5300 Regulating urination 1 d5301 Regulating defecation 1 d5400 Putting on clothes 2 d550 Eating 1 d571 Looking after one’s safety 1 d7 Interpersonal interactions and relationships 1 d845 Acquiring, keeping and terminating a job 1 Total   33   Summary table for Face, Legs, Activity, Cry, Consolability scale (FLACC) Codes Category name Frequency of appearance in the measure b280 Sensation of pain 1 Total   1    250   Summary table for Family Support Scale  (FSS) Codes Category name Frequency of appearance in the measure nc not covered 1 Total   1  Summary table for Gillette Gait Index  (GGI)  Codes Category name Frequency of appearance in the measure b1471 Quality of psychomotor functions 1 b770 Gait pattern functions 1 Total   2    Summary table for General Health Questionnaire (GHQ) Codes Category name Frequency of appearance in the measure b1252 Activity level 1 b126 Temperament and personality functions 1 b1263 Psychic stability 6 b1265 Optimism 2 b130 Energy and drive functions 2 b1340 Amount of sleep 2 b152 Emotional functions 3 b1522 Range of emotion 1 b164 Higher-level cognitive functions 1 b28010 Pain in head and neck 1 b735 Muscle tone functions 1 d240 Handling stress and other psychological demands 1 nd-gh not definable-general health 3 pf Personal Factors 3 Total   28   251  Summary table for Global Measure of Change (GMC) Codes Category name Frequency of appearance in the measure b1 Mental functions 2 b122 Global psychosocial functions 1 b152 Emotional functions 1 d4 Mobility 1 Total   5  Summary table for Griffiths Mental Development Scale (GMDS) Codes Category name Frequency of appearance in the measure b1670 Reception of language 1 b1671 Expression of language 1 b230 Hearing functions 1 b3 Voice and speech functions 1 b760 Control of voluntary movement functions 1 d4 Mobility 1 d440 Fine hand use 1 d5 Self-care 1 d880 Engagement in play 1 Total   9        252  Summary table for Gross Motor Function Measure (GMFM) Codes Category name Frequency of appearance in the measure b7101 Mobility of several joints 2 b760 Control of voluntary movement functions 4 b7611 Specific spontaneous movements 1 d410 Changing basic body position 5 d4100 Lying down 1 d4101 Squatting 1 d4102 Kneeling 1 d4103 Sitting 9 d4104 Standing 7 d4105 Bending 1 d4106 Shifting the body’s centre of gravity 2 d4107 Rolling over 5 d415 Maintaining a body position 1 d4152 Maintaining a kneeling position 4 d4153 Maintaining a sitting position 10 d4154 Maintaining a standing position 6 d4155 Maintaining head position 2 d4351 Kicking 2 d4452 Reaching 6 d450 Walking 3 d4500 Walking short distances 8 d4550 Crawling 5 d4551 Climbing 4 d4552 Running 2 d4553 Jumping 5 Total   97      253  Summary table for Gross Motor Performance Measure  (GMPM) Codes Category name Frequency of appearance in the measure b760 Control of voluntary movement functions 1 b765 Involuntary movement functions 1 b770 Gait pattern functions 3 Total   5   Summary table for Harter-SPPC-CP (HSPPC-CP) Codes Category name Frequency of appearance in the measure b125 Dispositions and intra-personal functions 1 b1266 Confidence 1 b180 Experience of self and time functions 1 b455 Exercise tolerance functions 1 d4 Mobility 1 d7 Interpersonal interactions and relationships 1 d820 School education 1 Total   7            254  Summary table for Health Utilities Index (HUI3) Codes Category name Frequency of appearance in the measure b1301 Motivation 1 b144 Memory functions 6 b152 Emotional functions 5 b163 Basic cognitive functions 1 b1646 Problem-solving 6 b2 Sensory functions and pain 1 b210 Seeing functions 1 b21000 Binocular acuity of distant vision 5 b21002 Binocular acuity of near vision 9 b230 Hearing functions 5 b2304 Speech discrimination 5 b280 Sensation of pain 5 b320 Articulation functions 4 d166 Reading 5 d175 Solving problems 6 d440 Fine hand use 6 d450 Walking 2 d4500 Walking short distances 2 d465 Moving around using equipment 4 e1150 General products and technology for personal use in daily living 1 e1201 Assistive products and technology for personal indoor and outdoor mobility and transportation 4 e1251 Assistive products and technology for communication 8 e3 Support and relationships 3 Total   95      255  Summary table for Impact on Family Scale (IMPACTFS) Codes Category name Frequency of appearance in the measure d130 Copying 1 d7 Interpersonal interactions and relationships 1 e5650 Economic services 1 nc not covered 1 nd-hc not definable-health condition 1 Total   5    Summary table for Jebsen-Taylor Test of Hand Function (JTHF) Codes Category name Frequency of appearance in the measure d445 Hand and arm use 1 Total   1                 256  Summary table for KIDSCREEN (KSCREEN) Codes Category name Frequency of appearance in the measure b126 Temperament and personality functions 1 b1265 Optimism 1 b130 Energy and drive functions 1 b140 Attention functions 1 b152 Emotional functions 3 b1801 Body image 1 b455 Exercise tolerance functions 1 d7200 Forming relationships 1 d740 Formal relationships 1 d7601 Child-parent relationships 1 e1650 Financial assets 1 e425 Individual attitudes of acquaintances, peers, colleagues, neighbours and community members 1 nc not covered 1 nd-gh not definable-general health 1 pf Personal Factors 1 Total   17          257   Summary table for Lifestyle Assessment Questionnaire-CP  (LAQ-CP)                                            (Continued)  Codes Category name Frequency of appearance in the measure d420 Transferring oneself 3 d4301 Carrying in the hands 1 d4400 Picking up 1 d4401 Grasping 1 d4402 Manipulating 1 d4551 Climbing 1 d4600 Moving around within the home 2 d4602 Moving around outside the home and other buildings 3 d5100 Washing body parts 1 d530 Toileting 1 d5400 Putting on clothes 1 d550 Eating 1 d7500 Informal relationships with friends 1 d820 School education 1 d920 Recreation and leisure 1 e1100 Food 1 e1101 Drugs 1 e115 Products and technology for personal use in daily living 3 e1151 Assistive products and technology for personal use in daily living 1 e155 Design, construction and building products and technology of buildings for private use 3 e165 Assets 2 e3 Support and relationships 2 e310 Immediate family 5 e320 Friends 1 e325 Acquaintances, peers, colleagues, neighbours and community members 1 e410 Individual attitudes of immediate family 2 258  Summary table for Lifestyle Assessment Questionnaire-CP  (LAQ-CP)                                            (Continued)  Codes Category name Frequency of appearance in the measure members e5700 Social security services 2 e5750 General social support services 3 e5800 Health services 8 e585 Education and training services, systems and policies 1 nc not covered 5 nd-hc not definable-health condition 1 Total   62                    259    Summary table for Leiter International Performance Scale (LIPS)  Codes Category name Frequency of appearance in the measure b117 Intellectual functions 1 Total   1       Summary table for Leiter International Performance Scale-Revised (LEITER-R)  Codes Category name Frequency of appearance in the measure b117 Intellectual functions 1 Total   1              260    Summary table for Life-Habits Questionnaire (LHQ)  Codes Category name Frequency of appearance in the measure d330 Speaking 1 d340 Producing messages in formal sign language 1 d345 Writing messages 1 d3600 Using telecommunication devices 1 d420 Transferring oneself 1 d4602 Moving around outside the home and other buildings 1 d470 Using transportation 1 d5 Self-care 1 d530 Toileting 1 d540 Dressing 1 d550 Eating 1 d570 Looking after one’s health 2 d6 Domestic life 1 d630 Preparing meals 2 d640 Doing housework 1 d710 Basic interpersonal interactions 1 d750 Informal social relationships 1 d820 School education 1 d840-d855 Work and employment 1 d870 Economic self-sufficiency 1 d910 Community life 2 d920 Recreation and leisure 1 d9201 Sports 1 d9202 Arts and culture 1 e1 Products and technology 1 Total   28    261    Summary table for Locus of Control Scale (LOC) Codes Category name Frequency of appearance in the measure b1266 Confidence 1 Total   1    Summary table for Movement ABC (MABC) Codes Category name Frequency of appearance in the measure b1471 Quality of psychomotor functions 1 b2351 Vestibular function of balance 1 d440 Fine hand use 1 d4455 Catching 1 Total   4    Summary table for Measurement of Activities of Daily Living questionnaire (MADL) Codes Category name Frequency of appearance in the measure d5 Self-care 1 Total   1    Summary table for Melbourne Assessment of Upper Limb Function (MAULF) Codes Category name Frequency of appearance in the measure d4401 Grasping 1 d4402 Manipulating 1 d4403 Releasing 1 d4452 Reaching 1 Total   4 262      Summary table for Mobility Questionnaire  (MobQues)  Codes Category name Frequency of appearance in the measure d4600 Moving around within the home 1 d4602 Moving around outside the home and other buildings 1 Total   2      Summary table for Ambulation Questionnaire  (MoVra)  Codes Category name Frequency of appearance in the measure d4600 Moving around within the home 1 d4602 Moving around outside the home and other buildings 1 Total   2         263  Summary table for Obstructive Sleep Apnea questionnaire (OSA) Codes Category name Frequency of appearance in the measure b1300 Energy level 3 b1304 Impulse control 1 b1341 Onset of sleep 1 b140 Attention functions 3 b1470 Psychomotor control 2 b1641 Organization and planning 1 b28010 Pain in head and neck 1 b440 Respiration functions 3 b530 Weight maintenance functions 2 b6202 Urinary continence 1 nc not covered 1 Total   19    Summary table for Physical Activity Questionnaire for Adolescents (PAQ-A) Codes Category name Frequency of appearance in the measure a&p Activity and participation 1 Total   1    Summary table for Peabody Developmental Motor Scales (PDMS-2) Codes Category name Frequency of appearance in the measure b750 Motor reflex functions 1 b760 Control of voluntary movement functions 1 d4 Mobility 1 d415 Maintaining a body position 1 d4401 Grasping 1 d4402 Manipulating 1 Total   6  264   Summary table for Pediatric Evaluation of Disability Inventory (PEDI)                                (Continued) Codes Category name Frequency of appearance in the measure b1 Mental functions 5 b114 Orientation functions 1 b1140 Orientation to time 1 b1141 Orientation to place 2 b1142 Orientation to person 1 b11420 Orientation to self 2 b11421 Orientation to others 1 b1521 Regulation of emotion 1 b1646 Problem-solving 2 b167 Mental functions of language 1 b1670 Reception of language 3 b16700 Reception of spoken language 5 b230 Hearing functions 1 d1314 Learning through pretend play 1 d133 Acquiring language 2 d1630 Pretending 2 d2103 Undertaking a single task in a group 1 d2105 Completing a complex task 1 d2502 Approaching persons or situations 1 d3 Communication 1 d330 Speaking 6 d335 Producing nonverbal messages 2 d3500 Starting a conversation 1 d410 Changing basic body position 3 265  Summary table for Pediatric Evaluation of Disability Inventory (PEDI)                                (Continued) Codes Category name Frequency of appearance in the measure d4103 Sitting 15 d4104 Standing 1 d4153 Maintaining a sitting position 6 d4155 Maintaining head position 1 d420 Transferring oneself 5 d4200 Transferring oneself while sitting 6 d4300 Lifting 3 d4301 Carrying in the hands 2 d4302 Carrying in the arms 1 d435 Moving objects with lower extremities 1 d4401 Grasping 3 d4402 Manipulating 7 d445 Hand and arm use 3 d4452 Reaching 1 d450 Walking 2 d455 Moving around 1 d4550 Crawling 5 d4551 Climbing 11 d4555 Scooting and rolling 6 d460 Moving around in different locations 1 d4600 Moving around within the home 5 d4602 Moving around outside the home and other buildings 10 d465 Moving around using equipment 1 d5100 Washing body parts 4 266  Summary table for Pediatric Evaluation of Disability Inventory (PEDI)                                (Continued) Codes Category name Frequency of appearance in the measure d5101 Washing whole body 2 d5102 Drying oneself 3 d5201 Caring for teeth 4 d5202 Caring for hair 3 d5205 Caring for nose 4 d530 Toileting 4 d5300 Regulating urination 5 d5301 Regulating defecation 6 d5400 Putting on clothes 7 d5401 Taking off clothes 5 d5402 Putting on footwear 3 d5403 Taking off footwear 1 d550 Eating 9 d560 Drinking 2 d571 Looking after one’s safety 5 d6 Domestic life 2 d640 Doing housework 3 d710 Basic interpersonal interactions 2 d820 School education 1 d860 Basic economic transactions 1 d880 Engagement in play 5 d8803 Shared cooperative play 2 d9 Community, social and civic life 2 e1 Products and technology 3 e3 Support and relationships 1 267  Summary table for Pediatric Evaluation of Disability Inventory (PEDI)                                (Continued) Codes Category name Frequency of appearance in the measure Total   233  Summary table for The Pediatric Quality of Life Inventory  (PEDSQL)  Codes Category name Frequency of appearance in the measure a&p Activity and participation 1 b1300 Energy level 1 b134 Sleep functions 1 b144 Memory functions 1 b152 Emotional functions 4 b280 Sensation of pain 1 b4550 General physical endurance 1 d160 Focusing attention 1 d4300 Lifting 1 d4500 Walking short distances 1 d4552 Running 1 d5101 Washing whole body 1 d640 Doing housework 1 d7504 Informal relationships with peers 1 d820 School education 3 d9201 Sports 1 e325 Acquaintances, peers, colleagues, neighbours and community members 1 e425 Individual attitudes of acquaintances, peers, colleagues, neighbours and community members 1 e5800 Health services 1 nd-gh not definable-general health 1  Total   25     268   Summary table for Portage Guide to Early Education (PGEE) Codes Category name Frequency of appearance in the measure b152 Emotional functions 1 b2 Sensory functions and pain 1 d1 Learning and applying knowledge 1 d3 Communication 1 d4 Mobility 1 d7 Interpersonal interactions and relationships 1 Total   6   Summary table for Pediatric Outcomes Data Collection Inventory (PODCI)                            (Continued) Codes Category name Frequency of appearance in the measure a&p Activity and participation 2 b1261 Agreeableness 3 b1266 Confidence 4 b1300 Energy level 1 b134 Sleep functions 1 b152 Emotional functions 4 b280 Sensation of pain 9 d4103 Sitting 2 d4104 Standing 2 d4105 Bending 1 d4153 Maintaining a sitting position 1 d4154 Maintaining a standing position 1 d420 Transferring oneself 1 d4200 Transferring oneself while sitting 1 d4300 Lifting 1 269  Summary table for Pediatric Outcomes Data Collection Inventory (PODCI)                            (Continued) Codes Category name Frequency of appearance in the measure d440 Fine hand use 2 d4402 Manipulating 2 d4453 Turning or twisting the hands or arms 2 d450 Walking 2 d4500 Walking short distances 2 d4501 Walking long distances 1 d455 Moving around 1 d4551 Climbing 3 d4552 Running 2 d4554 Swimming 1 d465 Moving around using equipment 2 d470 Using transportation 1 d4750 Driving human-powered transportation 4 d5100 Washing body parts 1 d5202 Caring for hair 1 d5400 Putting on clothes 1 d6 Domestic life 1 d7500 Informal relationships with friends 1 d820 School education 4 d920 Recreation and leisure 2 d9201 Sports 20 d9202 Arts and culture 1 d9205 Socializing 2 e115 Products and technology for personal use in daily living 2 270  Summary table for Pediatric Outcomes Data Collection Inventory (PODCI)                            (Continued) Codes Category name Frequency of appearance in the measure e225 Climate 1 e3 Support and relationships 4 e320 Friends 1 e410 Individual attitudes of immediate family members 2 nc not covered 11 nd-gh not definable-general health 8 pf Personal Factors 7 Total   129  Summary table for Physician's rating scale (PRS) Codes Category name Frequency of appearance in the measure b770 Gait pattern functions 6 Total   6     Summary table for Pediatric Volitional Questionnaire  (PVQ) Codes Category name Frequency of appearance in the measure b125 Dispositions and intra-personal functions 1 b1264 Openness to experience 1 b1301 Motivation 1 d820 School education 1 Total   4     271  Summary table for Quality of Life Instrument for People With Developmental Disabilities-children version (QOLDD) Codes Category name Frequency of appearance in the measure d330 Speaking 1 d7 Interpersonal interactions and relationships 1 e115 Products and technology for personal use in daily living 1 e120 Products and technology for personal indoor and outdoor mobility and transportation 1 e150 Design, construction and building products and technology of buildings for public use 2 e3 Support and relationships 1 e310 Immediate family 1 e330 People in positions of authority 1 e355 Health professionals 2 e4 Attitudes 1 e555 Associations and organizational services, systems and policies 1 e5550 Associations and organizational services 1 Total   14        272  Summary table for Quality of Upper Extremity Skills Test  (QUEST) Codes Category name Frequency of appearance in the measure b1261 Agreeableness 1 b735 Muscle tone functions 1 b755 Involuntary movement reaction functions 1 b760 Control of voluntary movement functions 1 b7603 Supportive functions of arm or leg 1 d440 Fine hand use 1 d4401 Grasping 1 Total   7     Summary table for The Revised Children's Manifest Anxiety Scale  (RCMAS) Codes Category name Frequency of appearance in the measure b122 Global psychosocial functions 1 b1263 Psychic stability 1 b1266 Confidence 1 b140 Attention functions 1 b1522 Range of emotion 2 pf-behaviour   1 Total   7     Summary table for Reynell Developmental Language Scales (REYDLS) Codes Category name Frequency of appearance in the measure d310 Communicating with - receiving - spoken messages 1 d330 Speaking 1 d331 Pre-talking 1 Total   3  273  Summary table for Stanford-Binet Intelligence Test (SBIQ) Codes Category name Frequency of appearance in the measure b144 Memory functions 4 d130 Copying 1 d145 Learning to write 1 d163 Thinking 1 d172 Calculating 3 d175 Solving problems 2 d4402 Manipulating 2 nc not covered 1 Total   15                   274  Summary table for Strength and Difficulties Questionnaire (SDQ) Codes Category name Frequency of appearance in the measure a&p Activity and participation 1 b126 Temperament and personality functions 3 b1260 Extraversion 1 b1266 Confidence 1 b140 Attention functions 2 b1400 Sustaining attention 1 b1470 Psychomotor control 2 b152 Emotional functions 4 b1521 Regulation of emotion 1 b1522 Range of emotion 1 b1645 Judgement 1 d250 Managing one’s own behaviour 1 d6 Domestic life 1 d640 Doing housework 1 d710 Basic interpersonal interactions 1 d7202 Regulating behaviours within interactions 1 d740 Formal relationships 1 d750 Informal social relationships 1 d7500 Informal relationships with friends 2 d820 School education 1 d8201 Maintaining educational programme 1 d920 Recreation and leisure 1 e420 Individual attitudes of friends 1 nc not covered 4 pf Personal Factors 4 Total   39       275   Summary table for School Function Assessment  (SFA)                                                       (Continued) Codes Category name Frequency of appearance in the measure b117 Intellectual functions 2 b144 Memory functions 2 b163 Basic cognitive functions 1 d170 Writing 2 d210 Undertaking a single task 2 d2100 Undertaking a simple task 2 d2104 Completing a simple task 1 d2105 Completing a complex task 1 d2304 Managing changes in daily routine 1 d250 Managing one’s own behaviour 3 d3 Communication 2 d4 Mobility 3 d410 Changing basic body position 2 d415 Maintaining a body position 2 d440 Fine hand use 3 d4402 Manipulating 1 d4551 Climbing 2 d470 Using transportation 1 d510 Washing oneself 2 d530 Toileting 1 d540 Dressing 2 d550 Eating 3 d560 Drinking 2 d570 Looking after one’s health 2 276  Summary table for School Function Assessment  (SFA)                                                       (Continued) Codes Category name Frequency of appearance in the measure d571 Looking after one’s safety 2 d710 Basic interpersonal interactions 2 d7203 Interacting according to social rules 2 d7400 Relating with persons in authority 3 d820 School education 4 d920 Recreation and leisure 2 e Environmental Factors 1 e115 Products and technology for personal use in daily living 1 e120 Products and technology for personal indoor and outdoor mobility and transportation 3 e125 Products and technology for communication 1 e130 Products and technology for education 6 e150 Design, construction and building products and technology of buildings for public use 1 e585 Education and training services, systems and policies 1 e5853 Special education and training services 1 Total   75       277   Summary table for Self-Perception Profile for College Students (SPPCS) Codes Category name Frequency of appearance in the measure b117 Intellectual functions 1 b1264 Openness to experience 1 b1265 Optimism 1 b1266 Confidence 1 b180 Experience of self and time functions 1 b455 Exercise tolerance functions 1 d7 Interpersonal interactions and relationships 1 d7500 Informal relationships with friends 1 d7600 Parent-child relationships 1 d7700 Romantic relationships 1 d820 School education 1 pf Personal Factors 1 Total   12            278    Summary table for TNO-AZL questionnaire for Children's HRQOL (TACQOL)                                (Continued) Codes Category name Frequency of appearance in the measure a&p Activity and participation 1 b117 Intellectual functions 1 b1261 Agreeableness 1 b1264 Openness to experience 1 b1265 Optimism 2 b1300 Energy level 2 b140 Attention functions 1 b1470 Psychomotor control 1 b152 Emotional functions 2 b1522 Range of emotion 2 b16700 Reception of spoken language 1 b1671 Expression of language 1 b1721 Complex calculation 1 b2351 Vestibular function of balance 1 b2401 Dizziness 1 b280 Sensation of pain 2 b28010 Pain in head and neck 2 b28012 Pain in stomach or abdomen 1 b5350 Sensation of nausea 1 d137 Acquiring concepts 1 d166 Reading 1 d170 Writing 1 d4104 Standing 1 279  Summary table for TNO-AZL questionnaire for Children's HRQOL (TACQOL)                                (Continued) Codes Category name Frequency of appearance in the measure d450 Walking 1 d4501 Walking long distances 1 d4551 Climbing 1 d4552 Running 2 d4750 Driving human-powered transportation 1 d510 Washing oneself 1 d530 Toileting 1 d540 Dressing 1 d550 Eating 1 d560 Drinking 1 d7402 Relating with equals 1 d7601 Child-parent relationships 2 d820 School education 1 d880 Engagement in play 1 d8803 Shared cooperative play 2 d9201 Sports 1 d9204 Hobbies 1 e425 Individual attitudes of acquaintances, peers, colleagues, neighbours and community members 1 nc not covered 1 nd-hc not definable-health condition 6 pf Personal Factors 1 Total   58  280   Summary table for Toddler Infant Motor Evaluation  (TIME) Codes Category name Frequency of appearance in the measure a&p Activity and participation 1 b1471 Quality of psychomotor functions 1 b1472 Organization of psychomotor functions 1 b152 Emotional functions 1 b2351 Vestibular function of balance 1 b765 Involuntary movement functions 1 d4 Mobility 1 d7 Interpersonal interactions and relationships 1 nc not covered 1 Total   9   Summary table for Test of Nonverbal Intelligence, 2nd edition  (TONI-2) Codes Category name Frequency of appearance in the measure b140 Attention functions 2 b144 Memory functions 2 b1561 Visual perception 6 Total   10   Summary table for Test of Nonverbal Intelligence-3 (TONI-3) Codes Category name Frequency of appearance in the measure b117 Intellectual functions 1 b125 Dispositions and intra-personal functions 1 b1640 Abstraction 1 b1646 Problem-solving 1 Total   4    281  Summary table for Test for Reception of Grammar (TRG) Codes Category name Frequency of appearance in the measure d145 Learning to write 1 Total   1   Summary table for Vineland Adaptive Behavior Scales (VABS)                                                          (Continued) Codes Category name Frequency of appearance in the measure b1140 Orientation to time 2 b117 Intellectual functions 1 b1250 Adaptability 1 b126 Temperament and personality functions 1 b1304 Impulse control 1 b140 Attention functions 1 b1671 Expression of language 1 d115 Listening 1 d130 Copying 1 d140 Learning to read 1 d166 Reading 1 d170 Writing 1 d2400 Handling responsibilities 1 d2501 Responding to demands 1 d3 Communication 1 d330 Speaking 2 d331 Pre-talking 1 d3352 Producing drawings and photographs 1 d350 Conversation 2 282  Summary table for Vineland Adaptive Behavior Scales (VABS)                                                          (Continued) Codes Category name Frequency of appearance in the measure d3600 Using telecommunication devices 2 d3601 Using writing machines 1 d4 Mobility 1 d4103 Sitting 1 d4104 Standing 1 d4402 Manipulating 2 d450 Walking 1 d455 Moving around 1 d4550 Crawling 1 d4552 Running 1 d4602 Moving around outside the home and other buildings 1 d5 Self-care 1 d5101 Washing whole body 1 d520 Caring for body parts 1 d530 Toileting 1 d540 Dressing 1 d550 Eating 1 d560 Drinking 1 d570 Looking after one’s health 1 d571 Looking after one’s safety 2 d640 Doing housework 2 d710 Basic interpersonal interactions 1 d7104 Social cues in relationships 2 d7203 Interacting according to social rules 1 283  Summary table for Vineland Adaptive Behavior Scales (VABS)                                                          (Continued) Codes Category name Frequency of appearance in the measure d7500 Informal relationships with friends 1 d7700 Romantic relationships 1 d850 Remunerative employment 1 d860 Basic economic transactions 1 d880 Engagement in play 1 d8803 Shared cooperative play 1 d9200 Play 2 d9205 Socializing 2 e5600 Media services 1 nc not covered 3 pf Personal Factors 2 Total   67              284   Summary table for WeeFIM (WEEFIM) Codes Cateegory name Frequency of appearance in the measure b144 Memory functions 1 d175 Solving problems 1 d310 Communicating with - receiving - spoken messages 1 d330 Speaking 1 d331 Pre-talking 1 d420 Transferring oneself 3 d450 Walking 1 d4550 Crawling 1 d4551 Climbing 1 d465 Moving around using equipment 1 d5101 Washing whole body 1 d520 Caring for body parts 1 d530 Toileting 1 d5300 Regulating urination 1 d5301 Regulating defecation 1 d5400 Putting on clothes 2 d550 Eating 1 d710 Basic interpersonal interactions 1 Total   21       285   Summary table for The Wechsler Intelligence Scale for Children-III (WISC-III) Codes Category name Frequency of appearance in the measure b140 Attention functions 4 b144 Memory functions 3 b1561 Visual perception 3 b1565 Visuospatial perception 2 b1600 Pace of thought 1 b164 Higher-level cognitive functions 2 b1670 Reception of language 1 b172 Calculation functions 1 d132 Acquiring information 1 d133 Acquiring language 1 d137 Acquiring concepts 1 d160 Focusing attention 1 Total  21   Summary table for Wechsler Preschool and Primary Scale of Intelligence (WPPSI) Codes Category name Frequency of appearance in the measure b1565 Visuospatial perception 1 b1672 Integrative language functions 2 d130 Copying 1 d133 Acquiring language 1 d137 Acquiring concepts 2 d1551 Acquiring complex skills 1 d163 Thinking 5 d310 Communicating with - receiving - spoken messages 1 Total   14       286   Summary table for Youth Quality of Life Instrument Research Version  (YQOL-R) Codes Category name Frequency of appearance in the measure a&p Activity and participation 2 b125 Dispositions and intra-personal functions 2 b1254 Persistence 1 b126 Temperament and personality functions 3 b1260 Extraversion 1 b1264 Openness to experience 2 b1265 Optimism 3 b1266 Confidence 1 b1300 Energy level 1 b152 Emotional functions 2 b1800 Experience of self 2 b1801 Body image 1 d132 Acquiring information 1 d240 Handling stress and other psychological demands 1 d2401 Handling stress 1 d760 Family relationships 1 d7600 Parent-child relationships 2 d820 School education 1 d930 Religion and spirituality 1 e1650 Financial assets 1 e310 Immediate family 1 e410 Individual attitudes of immediate family members 3 e425 Individual attitudes of acquaintances, peers, colleagues, neighbours and community members 2 nd-qol not definable quality of life 1 pf Personal Factors 9 Total   46  Complete list of references provided in Appendix F Section 1 287  Appendix H  ICF-CY Categories Identified in the Four Preparatory Studies  This appendix shows all unique ICF-CY categories identified in the systematic review of the literature, the expert survey study, the qualitative study and the clinical study. The total number of unique ICF-CY categories was 497. The categories are organized by ICF-CY component and study.  ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study   BODY FUNCTIONS     1 b110 Consciousness functions 0 1 0 1 2 b114 Orientation functions 1 1 0 0 3 b1140 Orientation to time 1 0 0 0 4 b1141 Orientation to place 1 0 0 0 5 b1142 Orientation to person 1 0 0 0 6 b11420 Orientation to self 1 1 0 0 7 b11421 Orientation to others 1 0 0 0 8 b1144 Orientation to space 0 1 0 0 9 b117 Intellectual functions 1 1 1 1 10 b122 Global psychosocial functions 1 1 0 0 11 b125 Dispositions and intra-personal functions 1 1 0 1 12 b1250 Adaptability 1 1 0 0 13 b1252 Activity level 1 0 0 0 14 b1254 Persistence 1 0 0 0 15 b1255 Approachability 1 0 0 0 16 b126 Temperament and personality functions 1 1 0 0  288   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 17 b1260 Extraversion 1 1 0 0 18 b1261 Agreeableness 1 0 0 0 19 b1263 Psychic stability 1 0 0 0 20 b1264 Openness to experience 1 1 0 0 21 b1265 Optimism 1 0 0 0 22 b1266 Confidence 1 0 0 0 23 b130 Energy and drive functions 1 1 0 1 24 b1300 Energy level 1 0 0 0 25 b1301 Motivation 1 1 0 0 26 b1302 Appetite 1 0 0 0 27 b1304 Impulse control 1 0 0 0 28 b134 Sleep functions 1 1 1 1 29 b1340 Amount of sleep 1 0 0 0 30 b1341 Onset of sleep 1 0 0 0 31 b1342 Maintenance of sleep 1 0 0 0 32 b140 Attention functions 1 1 1 0 33 b1400 Sustaining attention 1 0 0 0 34 b1401 Shifting attention 1 0 0 0 35 b144 Memory functions 1 1 1 1 36 b147 Psychomotor functions 1 1 0 0 37 b1470 Psychomotor control 1 0 0 1 38 b1471 Quality of psychomotor functions 1 0 0 0 289   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 39 b1472 Organization of psychomotor functions 1 0 0 0 40 b1473 Manual dominance 0 0 0 1 41 b152 Emotional functions 1 1 0 1 42 b1520 Appropriateness of emotion 1 0 0 0 43 b1521 Regulation of emotion 1 0 0 0 44 b1522  1 0 0 0 45 b156 Perceptual functions 0 1 0 0 46 b1561 Visual perception 1 0 0 0 47 b1564 Tactile perception 1 1 0 0 48 b1565 Visuospatial perception 1 0 0 0 49 b1600 Pace of thought 1 0 0 0 50 b163 Basic cognitive functions 1 0 0 1 51 b164 Higher-level cognitive functions 1 1 1 0 52 b1640 Abstraction 1 1 0 0 53 b1641 Organization and planning 1 0 0 0 54 b1642 Time management 1 0 0 0 55 b1643 Cognitive flexibility 1 1 0 0 56 b1645 Judgement 1 0 0 0 57 b1646 Problem-solving 1 1 0 0 58 b167 Mental functions of language 1 1 0 1 59 b1670 Reception of language 1 1 0 0 60 b16700 Reception of spoken language 1 0 0 0 290   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 61 b1671 Expression of language 1 1 1 0 62 b16710 Expression of spoken language 0 1 0 0 63 b1672 Integrative language functions 1 0 0 0 64 b172 Calculation functions 1 1 1 0 65 b1721 Complex calculation 1 0 0 0 66 b180 Experience of self and time functions 1 0 0 0 67 b1800 Experience of self 1 0 0 0 68 b1801 Body image 1 1 0 0 69 b210 Seeing functions 1 1 1 1 70 b21000 Binocular acuity of distant vision 1 0 0 0 71 b21002 Binocular acuity of near vision 1 0 0 0 72 b2101 Visual field functions 1 0 0 0 73 b215 Functions of structures adjoining the eye 0 0 0 1 74 b2152 Functions of external muscles of the eye 0 1 0 0 75 b230 Hearing functions 1 1 1 1 76 b2304 Speech discrimination 1 0 0 0 77 b2351 Vestibular function of balance 1 0 0 0 78 b2401 Dizziness 1 0 0 0 79 b260 Proprioceptive function 0 1 0 0 80 b280 Sensation of pain 1 1 1 1 81 b2800 Generalized pain 1 0 0 0 82 b2801 Pain in body part 1 0 0 0 291   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 83 b28010 Pain in head and neck 1 0 0 0 84 b28011 Pain in chest 1 0 0 0 85 b28012 Pain in stomach or abdomen 1 0 0 0 86 b310 Voice functions 0 1 0 0 87 b3100 Production of voice 0 1 0 0 88 b3101 Quality of voice 1 0 0 0 89 b320 Articulation functions 1 1 1 1 90 b3300 Fluency of speech 1 0 0 0 91 b410 Heart functions 0 1 0 0 92 b4100 Heart rate 1 0 0 0 93 b420 Blood pressure functions 1 0 0 0 94 b4301 Oxygen-carrying functions of the blood 1 0 0 0 95 b4350 Immune response 1 0 0 0 96 b440 Respiration functions 1 1 1 1 97 b4400 Respiration rate 1 0 0 0 98 b4501 Transportation of airways mucus 0 0 1 1 99 b455 Exercise tolerance functions 1 0 0 1 100 b4550 General physical endurance 1 1 1 0 101 b4551 Aerobic capacity 1 0 0 0 102 b510 Ingestion functions 1 1 1 1 103 b5100 Sucking 0 1 0 0 104 b5102 Chewing 0 1 1 0 292   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 105 b5104 Salivation 0 1 1 1 106 b5105 Swallowing 1 1 1 1 107 b51050 Oral swallowing 0 1 0 0 108 b5106 Vomiting 1 1 0 1 109 b51060 Regurgitating 1 0 0 0 110 b515 Digestive functions 0 1 1 1 111 b525 Defecation functions 1 1 1 1 112 b5250 Elimination of faeces 0 1 0 0 113 b5253 Faecal continence 0 1 0 0 114 b530 Weight maintenance functions 1 0 0 1 115 b5350 Sensation of nausea 1 0 0 0 116 b540 General metabolic functions 1 0 0 0 117 b5400 Basal metabolic rate 1 0 0 0 118 b545 Water, mineral and electrolyte balance functions 1 0 0 0 119 b5451 Mineral balance 1 1 0 0 120 b555 Endocrine gland functions 0 1 0 0 121 b5550 Pubertal functions 1 0 1 1 122 b560 Growth maintenance functions 1 1 1 1 123 b610 Urinary excretory functions 0 1 0 0 124 b620 Urination functions 0 1 1 0 125 b6202 Urinary continence 1 0 0 0 126 b640 Sexual functions 1 1 0 0 293   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 127 b650 Menstruation functions 0 0 0 1 128 b710 Mobility of joint functions 1 1 0 1 129 b7100 Mobility of a single joint 1 1 0 0 130 b7101 Mobility of several joints 1 0 0 0 131 b715 Stability of joint functions 1 1 0 1 132 b7150 Stability of a single joint 1 0 0 0 133 b720 Mobility of bone functions 0 1 0 1 134 b7201 Mobility of pelvis 0 1 0 0 135 b730 Muscle power functions 1 1 1 0 136 b7303 Power of muscles in lower half of the body 1 0 0 0 137 b735 Muscle tone functions 1 1 1 1 138 b740 Muscle endurance functions 0 0 0 1 139 b750 Motor reflex functions 1 1 1 1 140 b7500 Stretch motor reflex 1 0 0 0 141 b755 Involuntary movement reaction functions 1 1 1 1 142 b760 Control of voluntary movement functions 1 1 1 1 143 b7602 Coordination of voluntary movements 0 1 1 1 144 b7603 Supportive functions of arm or leg 1 1 0 0 145 b761 Spontaneous movements 1 1 0 1 146 b7611 Specific spontaneous movements 1 0 0 1 147 b765 Involuntary movement functions 1 1 0 1 148 b7653 Stereotypies and motor perseveration 1 0 0 0 294   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 149 b770 Gait pattern functions 1 1 1 1 150 b780 Sensations related to muscles and movement functions 0 1 0 0 151 b840 Sensation related to the skin 1 0 0 0    TOTAL BODY FUNCTIONS 123 74 30 42        Count Code Category name Systematc Review Expert Survey Qualitative study Clinical Study   ACTIVITY AND PARTICIPATION     152 d110 Watching 1 1 0 0 153 d115 Listening 1 1 0 0 154 d120 Other purposeful sensing 0 1 0 0 155 d1201 Touching 0 1 0 0 156 d129 Purposeful sensory experiences, other specified and unspecified 0 1 0 0 157 d130 Copying 1 0 0 0 158 d131 Learning through actions with objects 1 1 0 0 159 d1314 Learning through pretend play 1 0 0 0 160 d132 Acquiring information 1 1 0 0 161 d133 Acquiring language 1 0 0 0 162 d137 Acquiring concepts 1 1 1 1 163 d140 Learning to read 1 0 0 0 164 d145 Learning to write 1 1 1 0 165 d155 Acquiring skills 1 1 0 0 295   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 166 d1551 Acquiring complex skills 1 0 0 0 167 d160 Focusing attention 1 1 0 1 168 d163 Thinking 1 1 1 0 169 d1630 Pretending 1 0 0 0 170 d166 Reading 1 1 1 1 171 d170 Writing 1 1 1 0 172 d172 Calculating 1 1 1 0 173 d175 Solving problems 1 1 1 0 174 d177 Making decisions 0 1 1 0 175 d210 Undertaking a single task 1 1 0 1 176 d2100 Undertaking a simple task 1 0 0 0 177 d2103 Undertaking a single task in a group 1 0 0 0 178 d2104 Completing a simple task 1 0 0 0 179 d2105 Completing a complex task 1 0 1 0 180 d220 Undertaking multiple tasks 1 0 1 1 181 d230 Carrying out daily routine 0 1 0 1 182 d2300 Following routines 0 0 0 1 183 d2304 Managing changes in daily routine 1 0 0 0 184 d240 Handling stress and other psychological demands 1 1 0 0 185 d2400 Handling responsibilities 1 0 0 0 186 d2401 Handling stress 1 0 0 0 187 d2402 Handling crisis 1 0 0 0 296   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 188 d250 Managing one’s own behaviour 1 1 0 0 189 d2501 Responding to demands 1 0 0 0 190 d2502 Approaching persons or situations 1 0 0 0 191 d310 Communicating with - receiving - spoken messages 1 1 0 0 192 d3101 Comprehending simple spoken messages 0 1 1 0 193 d315 Communicating with - receiving - nonverbal messages 1 1 0 1 194 d325 Communicating with - receiving - written messages 0 1 0 0 195 d330 Speaking 1 1 1 1 196 d331 Pre-talking 1 1 1 1 197 d332 Singing 0 1 0 0 198 d335 Producing nonverbal messages 1 1 0 1 199 d3350 Producing body language 0 1 1 1 200 d3351 Producing signs and symbols 0 0 1 1 201 d3352 Producing drawings and photographs 1 1 0 0 202 d340 Producing messages in formal sign language 1 0 0 0 203 d345 Writing messages 1 0 0 0 204 d350 Conversation 1 1 0 0 205 d3500 Starting a conversation 1 0 0 0 206 d3501 Sustaining a conversation 1 0 0 0 207 d355 Discussion 1 1 0 0 208 d360 Using communication devices and techniques 0 1 1 1 297   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 209 d3600 Using telecommunication devices 1 1 1 0 210 d3601 Using writing machines 1 0 0 0 211 d410 Changing basic body position 1 1 1 1 212 d4100 Lying down 1 0 1 0 213 d4101 Squatting 1 0 0 0 214 d4102 Kneeling 1 0 0 0 215 d4103 Sitting 1 1 1 1 216 d4104 Standing 1 1 1 1 217 d4105 Bending 1 0 0 0 218 d4106 Shifting the body’s centre of gravity 1 0 0 0 219 d4107 Rolling over 1 1 0 1 220 d415 Maintaining a body position 1 1 1 0 221 d4152 Maintaining a kneeling position 1 0 0 0 222 d4153 Maintaining a sitting position 1 0 0 0 223 d4154 Maintaining a standing position 1 0 0 0 224 d4155 Maintaining head position 1 0 0 0 225 d420 Transferring oneself 1 1 1 1 226 d4200 Transferring oneself while sitting 1 0 0 0 227 d430 Lifting and carrying objects 1 1 1 0 228 d4300 Lifting 1 0 0 0 229 d4301 Carrying in the hands 1 0 0 0 230 d4302 Carrying in the arms 1 0 0 0 298   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 231 d435 Moving objects with lower extremities 1 0 1 0 232 d4351 Kicking 1 0 0 0 233 d440 Fine hand use 1 1 1 1 234 d4400 Picking up 1 0 1 0 235 d4401 Grasping 1 1 0 0 236 d4402 Manipulating 1 1 1 0 237 d4403 Releasing 1 1 0 0 238 d445 Hand and arm use 1 1 1 1 239 d4452 Reaching 1 1 1 1 240 d4453 Turning or twisting the hands or arms 1 0 0 0 241 d4455 Catching 1 1 0 0 242 d449 Carrying, moving and handling objects, other specified and unspecified 0 0 1 0 243 d450 Walking 1 1 1 1 244 d4500 Walking short distances 1 0 1 0 245 d4501 Walking long distances 1 0 1 1 246 d4502 Walking on different surfaces 1 1 1 1 247 d4503 Walking around obstacles 1 0 0 0 248 d455 Moving around 1 1 1 0 249 d4550 Crawling 1 1 1 1 250 d4551 Climbing 1 1 1 1 251 d4552 Running 1 1 1 1 252 d4553 Jumping 1 1 1 1 299   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 253 d4554 Swimming 1 1 0 1 254 d4555 Scooting and rolling 1 1 0 0 255 d460 Moving around in different locations 1 0 1 0 256 d4600 Moving around within the home 1 0 0 0 257 d4602 Moving around outside the home and other buildings 1 1 0 0 258 d465 Moving around using equipment 1 1 1 1 259 d470 Using transportation 1 1 1 0 260 d475 Driving 0 1 0 0 261 d4750 Driving human-powered transportation 1 1 1 1 262 d480 Riding animals for transportation 1 1 0 0 263 d510 Washing oneself 1 1 1 1 264 d5100 Washing body parts 1 1 0 0 265 d5101 Washing whole body 1 0 0 0 266 d5102 Drying oneself 1 0 0 0 267 d520 Caring for body parts 1 1 1 0 268 d5201 Caring for teeth 1 0 1 0 269 d5202 Caring for hair 1 1 0 0 270 d5205 Caring for nose 1 0 0 0 271 d530 Toileting 1 1 1 1 272 d5300 Regulating urination 1 1 0 0 273 d5301 Regulating defecation 1 1 0 0 274 d540 Dressing 1 1 1 1 300   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 275 d5400 Putting on clothes 1 0 1 0 276 d5401 Taking off clothes 1 0 1 0 277 d5402 Putting on footwear 1 0 1 0 278 d5403 Taking off footwear 1 0 0 0 279 d550 Eating 1 1 1 1 280 d560 Drinking 1 1 1 0 281 d570 Looking after one’s health 1 1 0 0 282 d5701 Managing diet and fitness 0 1 0 0 283 d5702 Maintaining one’s health 1 0 0 0 284 d571 Looking after one’s safety 1 1 1 0 285 d620 Acquisition of goods and services 0 1 1 0 286 d6200 Shopping 1 1 0 0 287 d630 Preparing meals 1 1 1 0 288 d6300 Preparing simple meals 1 0 0 0 289 d640 Doing housework 1 1 1 0 290 d6400 Washing and drying clothes and garments 1 0 0 0 291 d650 Caring for household objects 1 0 0 0 292 d6505 Taking care of plants, indoors and outdoors 1 0 0 0 293 d6506 Taking care of animals 1 0 0 0 294 d710 Basic interpersonal interactions 1 1 0 0 295 d7100 Respect and warmth in relationships 0 1 0 0 296 d7104 Social cues in relationships 1 0 0 0 301   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 297 d7105 Physical contact in relationships 1 0 0 0 298 d720 Complex interpersonal interactions 1 1 0 0 299 d7200 Forming relationships 1 0 0 0 300 d7202 Regulating behaviours within interactions 1 0 0 0 301 d7203 Interacting according to social rules 1 1 0 0 302 d730 Relating with strangers 0 1 1 0 303 d740 Formal relationships 1 0 0 0 304 d7400 Relating with persons in authority 1 1 0 0 305 d7402 Relating with equals 1 0 0 0 306 d750 Informal social relationships 1 1 1 1 307 d7500 Informal relationships with friends 1 1 0 0 308 d7504 Informal relationships with peers 1 1 0 0 309 d760 Family relationships 1 1 1 0 310 d7600 Parent-child relationships 1 0 0 0 311 d7601 Child-parent relationships 1 1 0 0 312 d7602 Sibling relationships 1 0 1 0 313 d770 Intimate relationships 0 1 0 0 314 d7700 Romantic relationships 1 0 0 0 315 d810 Informal education 0 0 0 1 316 d815 Preschool education 1 1 0 1 317 d820 School education 1 1 1 1 318 d8201 Maintaining educational programme 1 0 1 1 302   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 319 d8202 Progressing in educational programme 1 0 0 0 320 d845 Acquiring, keeping and terminating a job 1 0 0 0 321 d8450 Seeking employment 1 0 0 0 322 d8451 Maintaining a job 1 0 0 0 323 d850 Remunerative employment 1 1 0 0 324 d855 Non-remunerative employment 1 0 0 0 325 d860 Basic economic transactions 1 0 0 0 326 d870 Economic self-sufficiency 1 0 0 0 327 d8700 Personal economic resources 0 1 0 0 328 d880 Engagement in play 1 1 1 1 329 d8800 Solitary play 1 0 0 0 330 d8803 Shared cooperative play 1 1 0 0 331 d910 Community life 1 1 1 0 332 d9100 Informal associations 1 0 0 0 333 d920 Recreation and leisure 1 1 1 1 334 d9200 Play 1 1 1 1 335 d9201 Sports 1 1 1 1 336 d9202 Arts and culture 1 1 1 1 337 d9203 Crafts 1 0 1 0 338 d9204 Hobbies 1 0 0 1 339 d9205 Socializing 1 1 1 1 340 d930 Religion and spirituality 1 0 0 0 303   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 341 d9300 Organized religion 1 0 0 0   TOTAL  ACTIVITIES AND PARTICIPATION 169 105 72 48 Count Code Category name Systematc Review Expert Survey Qualitative study Clinical Study   ENVIRONMENTAL FACTORS     342 e1100 Food 1 1 0 0 343 e1101 Drugs 1 1 1 1 344 e115 Products and technology for personal use in daily living 1 1 1 1 345 e1150 General products and technology for personal use in daily living 1 0 1 0 346 e1151 Assistive products and technology for personal use in daily living 1 1 1 1 347 e1152 Products and technology used for play 0 1 1 0 348 e11521 Adapted products and technology for play 0 1 1 0 349 e120 Products and technology for personal indoor and outdoor mobility and transportation 1 1 1 1 350 e1200 General products and technology for personal indoor and outdoor mobility and transportation 0 0 1 0 351 e1201 Assistive products and technology for personal indoor and outdoor mobility and transportation 1 1 1 1 352 e125 Products and technology for communication 1 1 1 0 353 e1250 General products and technology for communication 0 0 0 1 354 e1251 Assistive products and technology for communication 1 1 1 1 355 e130 Products and technology for education 1 1 1 0 356 e1300 General products and technology for education 0 0 1 0 304   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 357 e1301 Assistive products and technology for education 0 0 1 1 358 e140 Products and technology for culture, recreation and sport 0 1 1 0 359 e1401 Assistive products and technology for culture, recreation and sport 0 0 1 0 360 e150 Design, construction and building products and technology of buildings for public use 1 1 1 0 361 e1500 Design, construction and building products and technology for entering and exiting buildings for public use 1 0 1 0 362 e1501 Design, construction and building products and technology for gaining access to facilities inside buildings for public use 0 1 1 1 363 e1502 Design, construction and building products and technology for way finding, path routing and designation of locations in buildings for public use 0 1 0 0 364 e155 Design, construction and building products and technology of buildings for private use 1 1 1 0 365 e1550 Design, construction and building products and technology for entering and exiting of buildings for private use 0 0 1 1 366 e1551 Design, construction and building products and technology for gaining access to facilities in buildings for private use 0 0 1 1 367 e1553 Design, construction and building products and technology for physical safety of persons in buildings for private use 0 1 0 0 368 e160 Products and technology of land development 0 1 0 0 369 e1600 Products and technology of rural land development 0 1 0 0 370 e1601 Products and technology of suburban land development 0 1 0 0 305   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 371 e1603 Products and technology of parks, conservation and wildlife areas 0 1 0 0 372 e165 Assets 1 0 0 0 373 e1650 Financial assets 1 1 1 1 374 e225 Climate 1 0 1 0 375 e245 Time-related changes 0 1 0 0 376 e250 Sound 0 0 1 1 377 e310 Immediate family 1 1 1 1 378 e315 Extended family 0 1 1 1 379 e320 Friends 1 1 1 0 380 e325 Acquaintances, peers, colleagues, neighbours and community members 1 1 1 0 381 e330 People in positions of authority 1 1 1 0 382 e340 Personal care providers and personal assistants 1 1 1 0 383 e345 Strangers 0 0 1 1 384 e350 Domesticated animals 0 1 1 0 385 e355 Health professionals 1 1 1 0 386 e360 Other professionals 0 1 1 1 387 e410 Individual attitudes of immediate family members 1 1 1 0 388 e415 Individual attitudes of extended family members 0 1 0 0 389 e420 Individual attitudes of friends 1 1 1 0 390 e425 Individual attitudes of acquaintances, peers, colleagues, neighbours and community members 1 1 1 1 391 e430 Individual attitudes of people in positions of authority 1 1 1 0 306   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 392 e440 Individual attitudes of personal care providers and personal assistants 0 0 1 0 393 e445 Individual attitudes of strangers 0 1 1 0 394 e450 Individual attitudes of health professionals 0 1 1 0 395 e455 Individual attitudes of other professionals 0 1 0 0 396 e460 Societal attitudes 0 1 1 0 397 e465 Social norms, practices and ideologies 0 1 0 0 398 e525 Housing services, systems and policies 0 0 1 1 399 e5250 Housing services 0 1 0 0 400 e540 Transportation services, systems and policies 0 1 1 0 401 e5400 Transportation services 0 1 0 0 402 e545 Civil protection services, systems and policies 0 0 1 0 403 e550 Legal services, systems and policies 0 1 0 0 404 e5501 Legal systems 0 1 0 0 405 e5502 Legal policies 0 1 1 0 406 e555 Associations and organizational services, systems and policies 1 1 1 0 407 e5550 Associations and organizational services 1 1 0 0 408 e560 Media services, systems and policies 0 1 1 1 409 e5600 Media services 1 1 0 0 410 e5650 Economic services 1 1 0 0 411 e570 Social security services, systems and policies 0 1 1 1 412 e5700 Social security services 1 1 0 0 413 e5702 Social security policies 0 1 0 0 307   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 414 e575 General social support services, systems and policies 0 1 1 1 415 e5750 General social support services 1 1 0 0 416 e5752 General social support policies 0 1 0 0 417 e580 Health services, systems and policies 1 1 1 0 418 e5800 Health services 1 1 1 1 419 e5801 Health systems 0 1 0 0 420 e5802 Health policies 0 1 0 0 421 e585 Education and training services, systems and policies 1 1 1 1 422 e5850 Education and training services 0 1 0 0 423 e5852 Education and training policies 0 1 0 0 424 e5853 Special education and training services 1 1 1 1 425 e5855 Special education and training policies 0 1 1 0 426 e5900 Labour and employment services 0 1 0 0 427 e5902 Labour and employment policies 0 1 0 0   TOTAL ENVIRONMENTAL FACTORS 36 70 56 25 Count Code Category name Systematc Review Expert Survey Qualitative study Clinical Study   BODY STRUCTURES     428 s110 Structure of brain 1 1 1 1 429 s1100 Structure of cortical lobes 0 1 0 0 430 s11000 Frontal lobe 0 1 0 0 431 s11002 Parietal lobe 0 1 0 0 308   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 432 s11003 Occipital lobe 0 1 0 0 433 s1103 Basal ganglia and related structures 0 1 0 0 434 s1104 Structure of cerebellum 0 1 0 0 435 s1105 Structure of brain stem 0 1 0 0 436 s1106 Structure of cranial nerves 0 1 0 0 437 s1107 Structure of white matter 0 1 0 0 438 s11070 Corpus callosum 1 0 0 0 439 s120 Spinal cord and related structures 0 1 0 0 440 s12000 Cervical spinal cord 0 1 0 0 441 s1201 Spinal nerves 0 1 0 0 442 s220 Structure of eyeball 1 1 1 1 443 s2303 External ocular muscles 0 1 0 0 444 s260 Structure of inner ear 0 1 0 0 445 s320 Structure of mouth 0 1 0 0 446 s3203 Tongue 0 1 0 0 447 s3204 Structure of lips 0 1 0 0 448 s3301 Oral pharynx 0 1 0 0 449 s340 Structure of larynx 0 1 0 1 450 s3400 Vocal folds 0 1 0 0 451 s410 Structure of cardiovascular system 0 1 0 0 452 s4100 Heart 0 1 0 0 453 s430 Structure of respiratory system 0 1 1 0 309   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 454 s4301 Lungs 0 1 0 0 455 s4302 Thoracic cage 0 1 0 0 456 s43039 Muscles of respiration, unspecified 0 1 0 0 457 s510 Structure of salivary glands 0 1 0 0 458 s520 Structure of oesophagus 0 1 0 1 459 s530 Structure of stomach 0 1 0 0 460 s540 Structure of intestine 0 1 1 1 461 s6102 Urinary bladder 0 1 0 0 462 s630 Structure of reproductive system 0 1 0 0 463 s710 Structure of head and neck region 0 1 0 0 464 s7100 Bones of cranium 1 1 0 0 465 s7103 Joints of head and neck region 0 1 0 0 466 s7104 Muscles of head and neck region 0 1 0 0 467 s720 Structure of shoulder region 0 1 0 0 468 s7201 Joints of shoulder region 0 1 0 0 469 s7202 Muscles of shoulder region 0 1 0 0 470 s730 Structure of upper extremity 0 1 1 0 471 s7301 Structure of forearm 0 1 0 0 472 s73011 Wrist joint 0 1 0 0 473 s7302 Structure of hand 0 1 1 1 474 s73022 Muscles of hand 0 1 0 0 475 s740 Structure of pelvic region 0 1 0 1 310   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 476 s7402 Muscles of pelvic region 0 1 0 0 477 s750 Structure of lower extremity 0 1 1 1 478 s7500 Structure of thigh 0 0 1 0 479 s75000 Bones of thigh 1 0 0 0 480 s75001 Hip joint 0 1 1 1 481 s75002 Muscles of thigh 0 1 1 0 482 s7501 Structure of lower leg 0 0 1 0 483 s75010 Bones of lower leg 0 1 0 0 484 s75011 Knee joint 0 1 1 1 485 s75012 Muscles of lower leg 0 1 0 0 486 s75013 Ligaments and fasciae of lower leg 0 1 0 0 487 s7502 Structure of ankle and foot 0 1 1 1 488 s760 Structure of trunk 1 1 1 1 489 s7600 Structure of vertebral column 0 1 0 0 490 s7601 Muscles of trunk 0 1 0 0 491 s770 Additional musculoskeletal structures related to movement 0 1 0 0 492 s7700 Bones 0 1 1 0 493 s7701 Joints 0 1 1 0 494 s7702 Muscles 1 1 1 1 495 s7703 Extra-articular ligaments, fasciae, extramuscular aponeuroses, retinacula, septa, bursae, unspecified 0 1 0 0 496 s810 Structure of areas of skin 1 1 0 0 311   ICF-CY Categories Identified in the Four Preparatory Studies, N=497                       (Continued)                     Code  Category name Systematic  Review Expert  Survey Qualitative  study Clinical Study 497 s820 Structure of skin glands 0 0 0 1    TOTAL BODY STRUCTURES 8 65 17 14          TOTAL ALL COMPONENTS 336 314 175 129                  312  Appendix I  Consensus Meeting–Characteristics of Participants This section shows the professional background of the consensus meeting participants.   I.1 Professional Background ICF Consensus Meeting Participants, N=26  Professional Background  Count  %  Developmental Pediatrician 3 11.5  Developmental Pediatrician and Physiatrist 1 3.8  Epidemiologist  1 3.8  Occupational Therapist 5 19.2  Occupational and Physical Therapist 1 3.8  Parent young woman with CP 1 3.8  Pediatric Neurologist 2 7.7  Pediatric Orthopedic Surgeon 1 3.8  Pediatric Physiatrist 1 3.8  Pediatrician 1 3.8  Physiatrist 1 3.8  Physical therapist 6 23.1  Physical therapy teacher 1 3.8  Special Education teacher 1 3.8  Total 26 100     313  I.2 Country of Origin of the ICF Consensus Meeting Participants, N=26 This section shows the country of origin of the consensus meeting participants.   Country  Count  %  Argentina 1 3.8  Australia 1 3.8  Brazil 1 3.8  Canada 13 50.0  India 2 7.7  Israel 1 3.8  Pakistan 1 3.8  South Africa 1 3.8  Spain 1 3.8  Sweden 1 3.8  Taiwan 1 3.8  UK 1 3.8  US 1 3.8  Total 26 100    

Cite

Citation Scheme:

        

Citations by CSL (citeproc-js)

Usage Statistics

Share

Embed

Customize your widget with the following options, then copy and paste the code below into the HTML of your page to embed this item in your website.
                        
                            <div id="ubcOpenCollectionsWidgetDisplay">
                            <script id="ubcOpenCollectionsWidget"
                            src="{[{embed.src}]}"
                            data-item="{[{embed.item}]}"
                            data-collection="{[{embed.collection}]}"
                            data-metadata="{[{embed.showMetadata}]}"
                            data-width="{[{embed.width}]}"
                            async >
                            </script>
                            </div>
                        
                    
IIIF logo Our image viewer uses the IIIF 2.0 standard. To load this item in other compatible viewers, use this url:
http://iiif.library.ubc.ca/presentation/dsp.24.1-0167250/manifest

Comment

Related Items