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Preschool outcomes in infants born less than or equal to 25 weeks gestational age : an integrative review… Colby, Lindsay Bryant 2018-05

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 PRESCHOOL OUTCOMES IN INFANTS BORN LESS THAN OR EQUAL TO 25 WEEKS GESTATIONAL AGE: AN INTEGRATIVE REVIEW OF THE LITERATURE by Lindsay Bryant Colby  B.S.N., The University of British Columbia, 2001  A SPAR PROJECT SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF  MASTER OF APPLIED SCIENCE in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (Nursing)  THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver)  May 2018  © Lindsay Bryant Colby, 2018   ii  The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the thesis entitled: PRESCHOOL OUTCOMES IN INFANTS BORN LESS THEN OR EQUAL TO 25 WEEKS GESTATIONAL AGE: AN INTEGRATIVE REVIEW OF THE LITERATURE submitted by Lindsay B. Colby in partial fulfillment of the requirements for the degree of Master of Applied Science  in Nursing Examining Committee: Dr. Wendy Hall, UBC School of Nursing  Supervisor  Dr. Manon Ranger, UBC School of Nursing  Supervisory Committee Member iii  Abstract Aim: To conduct an integrative review of the outcome literature for preterm infants born £25 weeks gestation at preschool age and synthesize the findings with available outcome data from BC Women’s Hospital Neonatal Follow-Up Clinic with a critical lens for its utility to nurses speaking with parents. Methods: Whittemore and Knafl’s methodology for integrative reviews was used. An electronic search of four databases, MEDLINE (OVID), CINAHL, PsycINFO and EBM Reviews was conducted using 96 key words that acknowledged a wide scope of outcomes, including neurodevelopmental outcomes, physical and health outcomes, functional outcomes, and parent/teacher-reports of outcomes. The selection criteria were articles that: differentiated the reporting of outcomes of infants £25 weeks gestation from other groups; included a clear description of assessment protocols, impairment definitions, population characteristics, and medical treatments; and were published in English between January 2006 and August 2016. Of 1237 identified abstracts, 87 articles were selected and 78 were excluded. Nine studies were included in the data set. Articles were characterized using these variables: assessment age, assessment tools, impairment definition, and reporting for gestational ages. Individual study results were categorized using these headings: survival with or without impairment, impairment rates, developmental quotients, motor function, cognitive function, behaviour, sensory-communication function, growth, and health. Results: Integration of the study findings with results from the BC Women’s Hospital Neonatal Follow-Up Clinic was limited by the small article sample size and the heterogeneity of the sample set. Results were integrated for moderate-severe impairment, gestational age, overall development, and growth. Gaps were found in outcomes that included children’s cognition, iv  behaviour, and health, and parents’ perceptions. A thematic analysis produced four themes: correlates of outcomes, comorbidities, message framing, and factors that affect reporting outcomes and interpreting data. Conclusion: Findings from the integrative review revealed both positive and negative outcomes for EPT infants. The findings suggest that, in addition to published empirical results, interpreted unit-specific outcome data following reporting guidelines, be presented from a balanced perspective. Acknowledging infants’ potential for healthy development and recognizing parents’ need for hope underpins effective nurse-family communication regarding extremely premature infants’ developmental outcomes and selection of appropriate nursing interventions.  v  Lay Summary Parents of babies born prematurely often ask nurses about their children’s future development. Previous research has suggested that NICU nurses have limited knowledge of babies’ long-term outcomes. This project used a distinct type of literature review methodology that integrated multiple definitions of outcomes in order to determine how research studies may or may not be helpful for nurses when answering parents’ questions. This review found that many studies focus on a narrow meaning of outcome, specifically disabilities, and future work should determine what outcomes are meaningful to parents at preschool age. Study results would be easier to understand if researchers followed guidelines and it would be helpful for nurses and families to focus on the long-term outcomes of babies at their local NICU. vi  Preface This SPAR project, including the identification, design, performance and analysis, is original, unpublished, independent work by the author, Lindsay Bryant Colby. vii  Table of Contents Abstract ................................................................................................................................... iii Lay Summary ............................................................................................................................ v Preface ...................................................................................................................................... vi Table of Contents .................................................................................................................... vii List of Tables ........................................................................................................................... xii List of Figures ........................................................................................................................xiii List of Abbreviations.............................................................................................................. xiv Acknowledgements................................................................................................................. xvi Dedication .............................................................................................................................. xvii Chapter 1: Introduction ............................................................................................................ 1 1.1 Overview ..................................................................................................................... 1 1.2 Context ........................................................................................................................ 2 1.3 Significance for Nursing Practice ................................................................................. 2 1.4 Problem Statement and Purpose ................................................................................... 6 1.5 Summary ..................................................................................................................... 6 Chapter 2: Literature Review ................................................................................................... 8 2.1 Introduction ................................................................................................................. 8 2.2 Neonatal Outcomes...................................................................................................... 8 2.2.1 Neonatal Morbidity .............................................................................................. 8 2.2.2 Long-term Morbidities ......................................................................................... 9 2.2.2.1 Motor Function ................................................................................................ 9 2.2.2.2 Language Abilities ......................................................................................... 11 viii  2.2.2.3 Cognition and Cognitive Domains .................................................................. 12 2.2.2.3.1 Executive Function ................................................................................... 13 2.2.2.3.2 Visual Perceptual Difficulties ................................................................... 13 2.2.2.3.3 Memory ................................................................................................... 14 2.2.2.3.4 Processing Speed ...................................................................................... 14 2.2.2.3.5 Attention Difficulties ................................................................................ 14 2.2.2.3.6 Academic Achievement ............................................................................ 15 2.2.2.4 Social and Behavioural Development ............................................................. 16 2.2.2.4.1 Behaviour ................................................................................................. 17 2.2.2.4.2 Attention Deficit and Hyperactivity Disorder (ADHD) ............................. 18 2.2.2.4.3 Autism Spectrum Disorder (ASD) ............................................................ 19 2.2.2.5 Sensory-Communication ................................................................................ 19 2.2.2.5.1 Vision ...................................................................................................... 19 2.2.2.5.2 Hearing .................................................................................................... 21 2.2.3 Antecedents and Correlates ................................................................................ 21 2.3 Outcome Trends over Time ....................................................................................... 22 2.4 Summary ................................................................................................................... 25 Chapter 3: Methodology ......................................................................................................... 26 3.1 Introduction ............................................................................................................... 26 3.2 Review Question ....................................................................................................... 27 3.3 Population ................................................................................................................. 27 3.4 Design ....................................................................................................................... 27 3.5 Search Methods ......................................................................................................... 28 ix  3.6 Data Sources .............................................................................................................. 32 3.6.1 MEDLINE ......................................................................................................... 32 3.6.2 CINAHL ............................................................................................................ 32 3.6.3 PsycINFO .......................................................................................................... 32 3.6.4 Evidence-based Medicine Reviews (EBM) ........................................................ 32 3.7 Article Selection ........................................................................................................ 32 3.8 Methodological Appraisal .......................................................................................... 36 3.9 Analysis..................................................................................................................... 37 3.10 Integration of the Findings ......................................................................................... 47 3.11 Summary ................................................................................................................... 47 Chapter 4: Results ................................................................................................................... 48 4.1 Introduction ............................................................................................................... 48 4.2 Characteristics of the Data Set ................................................................................... 48 4.2.1 Study Sample ..................................................................................................... 48 4.2.2 Aims .................................................................................................................. 48 4.2.3 Secondary Aims ................................................................................................. 49 4.2.4 Study Design ..................................................................................................... 49 4.2.5 Quality Appraisal ............................................................................................... 50 4.2.6 Country of Origin............................................................................................... 50 4.2.7 Study Samples ................................................................................................... 51 4.2.8 Age at Assessments............................................................................................ 51 4.2.9 Types of Outcomes Described ............................................................................ 51 4.2.10 Measures............................................................................................................ 52 x  4.2.11 Assessors ........................................................................................................... 53 4.2.12 Control Group .................................................................................................... 53 4.2.13 Blinding ............................................................................................................. 54 4.3 Integrated Outcome Findings ..................................................................................... 54 4.3.1 Outcomes Stratified by Week of Gestation ......................................................... 59 4.3.2 Impairment Rates ............................................................................................... 60 4.3.3 Developmental Quotients ................................................................................... 65 4.3.4 Motor Function .................................................................................................. 66 4.3.5 Growth............................................................................................................... 66 4.3.6 Behaviour .......................................................................................................... 66 4.3.7 Health ................................................................................................................ 67 4.3.8 Sensory-Communication .................................................................................... 67 4.4 Findings from Thematic Analysis .............................................................................. 67 4.4.1 Correlates of Outcomes ...................................................................................... 67 4.4.2 Comorbidities .................................................................................................... 70 4.4.3 Message Framing ............................................................................................... 71 4.4.4 Factors that Affect Reporting Outcomes and Interpreting Data ........................... 73 4.5 Summary ................................................................................................................... 75 Chapter 5: Discussion and Implications ................................................................................. 77 5.1 Introduction ............................................................................................................... 77 5.2 Study Methods ........................................................................................................... 77 5.3 Study Results ............................................................................................................. 79 5.4 Thematic Analysis ..................................................................................................... 84 xi  5.4.1 Correlates of Outcomes ...................................................................................... 85 5.4.1.1 Antenatal Steroids .......................................................................................... 85 5.4.1.2 Gestational Age .............................................................................................. 86 5.4.1.3 Morbidities..................................................................................................... 87 5.4.1.4 Sex ................................................................................................................. 87 5.4.1.5 Birth weight ................................................................................................... 89 5.4.1.6 Multiples ........................................................................................................ 89 5.4.1.7 SES ................................................................................................................ 90 5.4.2 Comorbidities .................................................................................................... 90 5.4.3 Message Framing ............................................................................................... 92 5.4.4 Reporting and Interpreting Data ......................................................................... 95 5.5 Strengths and Limitations .......................................................................................... 99 5.6 Implications for Nursing Practice ............................................................................. 101 5.6.1 Gaps and Future Directions .............................................................................. 102 5.6.2 Nursing Interventions Aimed at Improving Outcomes ...................................... 104 5.6.3 Nursing Communication with Parents .............................................................. 109 5.6.4 Moral Distress.................................................................................................. 111 5.7 Summary ................................................................................................................. 112 5.8 Conclusion .............................................................................................................. 113 References ............................................................................................................................. 117 Appendices ............................................................................................................................ 144 Appendix A Gross Motor Function Classification System – Expanded and Revised ............ 144 Appendix B Protocol for Data Collection ............................................................................ 145 xii  List of Tables Table 1. Keyword Search Strategy with Boolean Operators ....................................................... 31 Table 2. Abridged Study Matrix ................................................................................................ 39 Table 3. Outcome Domains Assessed in Each Publication for Infants Born ≤25 Weeks Gestational Age......................................................................................................................... 45 Table 4. Major Publication Findings.......................................................................................... 55 Table 5. Impairment Definition by Publication .......................................................................... 61 Table 6. Variations in Outcome Terminology ............................................................................ 72  xiii  List of Figures Figure 1. Search Strategy and Article Selection Protocol ........................................................... 34  xiv  List of Abbreviations ADHD attention deficit hyperactivity disorder ASD autism spectrum disorder ASQ Ages and Stages Questionnaire BC British Columbia BPD bronchopulmonary dysplasia BSID-II Bayley Scales of Infant and Toddler Development Second edition BSID-III Bayley Scales of Infant and Toddler Development Third edition CP cerebral palsy  CBCL child behaviour checklist DAS-II Differential Abilities Scales Second edition DCD developmental coordination disorder DSM-V Diagnostic and Statistical Manual of Mental Disorders EPT extremely preterm GA gestational age GMFCS gross motor function classification system IVH intraventricular hemorrhage IQ intelligence quotient MiCare CIHR Team in Maternal and Infant Care NEC necrotizing enterocolitis NFUC Neonatal Follow-Up Clinic NICU neonatal intensive care unit PCMCH Provincial Council for Maternal and Child Health PDA patent ductus arteriosus PVL periventricular leukomalacia ROP retinopathy of prematurity xv  SD standard deviation SES socioeconomic status SDQ Strengths and Difficulties Questionnaire SGA small for gestational age SNI severe neurodevelopmental impairment SPAR scholarly practice advancement project UBC The University of British Columbia VMI the Beery-Buktenica developmental test of Visual Motor Integration VPT very preterm  xvi  Acknowledgements I would like to thank my supervisor, Dr. Wendy Hall, for her patience, guidance, and invaluable advice. Her unwavering support throughout this process has reminded me that there is nothing more important than family and health. I would like to thank my scholarly practice advancement research (SPAR) committee member, Dr. Manon Ranger, for her encouraging words, expertise, and dedication to my project. I would also like to thank Katherine Miller, UBC Librarian for her guidance developing my literature search. I have been extremely fortunate to work with the most devoted, gifted, and caring group of health care providers at BC Women’s Hospital, specifically the Neonatal Follow-Up Clinic allied health team, Julie de Salaberry, and my mentors Philippa Hubber-Richard, Dr. Anne Synnes, Dr. Michael Whitfield, Dr. Ruth Grunau, Dr. Liisa Holsti, and Debbie Johannesen, who have helped pave the path to this point in my career. I am indebted to them for their balanced support, understanding, and guidance. Finally, a huge thank you to Arsalan Butt for his support and technical expertise formatting my tables and figures. Thank you to Alana, Clea and Aliki, who have yet to stop believing in me, supporting me, and making me a better clinician; my whole hearted thank you to my husband Stuart, for his love, partnership raising our children, and encouragement to keep achieving my personal and professional goals; and thank you to my mother Diana, without her emotional support and practical support as my first editor and babysitter, this project would not have been completed. xvii  Dedication This project and Master’s degree is dedicated to my grandparents who first instilled in me the value of helping people and being of service to my community; to my parents, Charles and Diana, for their love, support, and continued encouragement and example to pursue my academic dreams; to my brother, Charles, who has shown me not only that everything is possible in life but also not to be afraid to create the life you want to live; to my children, Lauren and Harrison, who are my ultimate dream come true. May you both come to know that you can achieve and create anything you set your mind to. This project is also dedicated to the families with whom I work, without whom this project would not be possible and who continuously show me the resilience of the human spirit. 1  Chapter 1: Introduction 1.1 Overview The uncertain outcomes for preterm infants are stressors for parents (Green, Darbyshire, Adams & Jackson, 2015; Holditch-Davis & Miles, 2000; Miles & Carter, 1983). Parents often turn to their infants’ nurses and other Neonatal Intensive Care Unit (NICU) team members for reassurance and answers regarding their infants’ potential developmental outcomes. For extremely preterm (EPT) infants born at 25 weeks gestational age or less, the uncertainty surrounding their prognosis and outcomes is even more pronounced. Nurses often struggle with how best to address parents’ specific questions, concerns, and hopes (Green et al., 2015). Many NICU nurses have limited knowledge of EPT infants’ outcomes and often underestimate the likelihood of positive long-term outcomes (Blanco, Suresh, Howard & Stroll, 2005; Janvier, Nadeau, Dêschenes, Couture & Barrington, 2007). NICU nurses require regular opportunities to access current evidence-informed information about long-term developmental outcomes of EPT infants. To my knowledge, the literature about outcomes for EPT infants has not been analyzed from the perspective of its utility for nurses when addressing parents’ questions and concerns about long-term outcomes. My Scholarly Practice Advancement Research Project (SPAR) aims to critically analyze the available literature on the overall outcomes of preterm infants born £ 25 weeks gestational age, and to synthesize the literature about this population of infants’ outcomes with available outcome data from British Columbia (BC) Women’s Hospital Neonatal Follow-Up Clinic. Strategies for knowledge translation to NICU nurses will be proposed and implications for nursing will be discussed. 2  1.2 Context In Canada, between 2005 and 2014, the rate of preterm birth (birth at <37 weeks gestational age) ranged from 8% (95% CI: 7.9%-8.1%) to 8.3% (95% CI: 8.2%-8.4%), (Public Health Agency of Canada, 2017).  In the province of BC, between 2005 and 2014, the rate of preterm birth ranged from 7.1% to 7.6% (Statistics Canada, 2018). Improvements in obstetrical and neonatal care and advancements in reproduction technology have increased the rate of preterm birth over the past 50 years, especially for EPT infants (Jarjour, 2015). In 2014 in Canada, 1,748 infants were born extremely preterm, (£27 weeks gestational age), 0.5% of the annual birthrate. In 2014 in BC, 169 infants were born extremely preterm, 0.4% of the annual birthrate (Statistics Canada, 2018). Mortality and morbidity from preterm birth is highest amongst infants born EPT (Goldberg, Culhane, Lams & Romero, 2008). Two-year survival is estimated at 56% for EPT births (Johnson, Gooch, Korol, Vo, Eyawo, Brant & Levy, 2014). Preterm births place immense demands on health, education, and social services; Johnson et al. (2014) estimated the collective cost to families and society of the first 10 years of life for preterm children in Canada to be 123.3 million dollars. 1.3 Significance for Nursing Practice NICU nurses are focused on the acute care issues of EPT infants; however, parents often ask questions about their infant’s prognosis and are looking for guidance and reassurance (Jones & McMurray, 2001). Nurses are uniquely positioned to answer parents’ questions, address their concerns, and provide support and reassurance, using current evidence-informed knowledge. Yet consistently, like other health care providers, NICU nurses have been found to have limited knowledge regarding the survival rates, disability rates, and long-term outcomes of EPT infants (Blanco et al., 2005; Janvier et al., 2007; Shoo, Penner & Cox, 1991). Physicians, NICU nurses, 3  and nurse practitioners were all found to overestimate mortality and disability rates for EPT infants (Blanco et al., 2005). Nurses have described how difficult it is to tolerate the unpredictability of how preterm babies will fare through their NICU course and beyond. Green et al. (2015) found that nurses contemplated the unpredictable courses and outcomes of premature infants and equated the outcomes to a lottery. This belief that both short and long-term outcomes are random emphasizes the need for nurses to be apprised of information on outcomes, including antecedents and correlates of outcomes that are associated with both adverse and favorable outcomes. Parents of EPT infants face many challenges. Charchuk and Simpson (2005) found one of the biggest challenges that parents reported was access to information regarding the prognosis of their infants. One study found that nurses more accurately estimated the kind and amount of information parents needed compared to physicians (Koh et al., 2000). Therefore, it is imperative that nurses have up-to-date knowledge and understanding of the longer-term outcomes of EPT infants. There is potential for NICU nurses to provide parents with outdated and incomplete information if there is no formal mechanism in place to acquaint NICU nurse with the highest quality and most up-to-date evidence regarding outcomes for EPT infants. Nurses may risk basing their knowledge on their experience with worst-case scenarios, a single research study, biased information from colleagues, or outdated literature. While parents may expect nurses to validate or interpret information that is available through the Internet or other sources, arguably NICU nurses should be supplementing such information with evidence from studies and unit-specific outcomes. Despite the importance for nurses to understand key factors that affect long-term outcomes of EPT infants, minimal 4  attention has been paid to methods by which nurses can be made aware of this important evidence. Another major challenge and source of stress for parents of premature infants is communication, specifically, the lack of consistent and realistic information and advice from health care professionals (Koh, et al., 2000). Koh et al. (2000) found that the failure of health care providers to communicate clearly had the greatest negative effect on parents of preterm infants. Lack of communication with parents, unprofessional communication between health care professionals, and inconsistencies in the information communicated to parents were all sources of stress for mothers, which undermined mothers’ perceptions of the competency of health care professionals (Holditch-Davis & Miles, 2000). In one study, Charchuk and Simpson (2003) found that lapses in communication had the risk of damaging a parent’s hope and argued that all moments of communication with parents are an opportunity to acknowledge hope. Hope has been identified as one of the highest needs of parents of acutely ill children (Kirschbaum, 1990). Discenza (2014) asserted that nurses require sensitivity when addressing parents’ questions and concerns by offering a balanced picture and maintaining hope. Therefore, information presented to parents must offer more than impairment rates and worst-case scenarios. A nurse’s effort to educate parents near an infant’s discharge has far-reaching implications for that infant’s future development because mother-infant dyadic relations and parenting abilities are significant predictors of premature infants’ neurodevelopmental outcomes (Grunau, et al. 2009). In other words, it can be expected that mothers and fathers with low expectations for their children, or who might have depression, anxiety, or high levels of stress 5  might have difficulty promoting their children’s positive neurodevelopmental outcomes (Fields, 2010). Nurses would be better prepared to adequately address parents’ questions and concerns if they were armed with evidence-informed outcome knowledge, as well as suggesting interventions that are known to improve neurodevelopmental outcomes, with the intention of providing opportunities for hope. Koh et al. (2000) suggested that one way to promote effective communication is by relying on evidence-based knowledge to develop tools that guide practitioners, which family members could consult. NICU nurses would benefit from formal opportunities to learn about audits and research conducted through neonatal follow-up clinics (NFUCs), as well as research studies and data registries that are established to help guide clinical policies and practice, specific to their institutions. The Canadian Nurses Association Position Statement on evidence-informed nursing practice and decision-making emphasized the importance of professional clinical judgment, as well as the consideration of client preferences and available resources to influence decision making, in addition to empirical evidence (Canadian Nurses Association, 2010). Thus, NICU nurses developing clinical policies must use their clinical judgment and integrate parents’ perspectives with available empirical evidence. This project is also significant because increasing a nurse’s knowledge of neurodevelopmental outcomes of EPT infants may have the potential to reduce nurses’ moral distress (Janvier et al., 2007) and to reduce care burdens exhibited by NICU nurses by representing potentially positive outcomes for their patients (Green et al., 2015). 6  1.4 Problem Statement and Purpose NFUCs are mandated to follow EPT infants and to report their outcomes to health care workers in NICUs, obstetrics and family medicine, and parents anticipating the birth of an EPT infant. This audit is carried out with the intent of improving NICU care and outcomes (Sauve & Lee, 2006). In order to properly address the needs of parents of EPT infants in the NICU, NICU nurses need access to integrated evidence-informed outcome data from NFUCs, registries, and literature that is meaningfully synthesized to be conveyed to parents. The combination of synthesized information, and balanced communication to parents, could more effectively meet parents’ needs. Researchers have suggested that nurses are poorly informed regarding long-term outcomes of EPT infants and have limited opportunities to access synthesized evidence-informed knowledge and outcome data (Blanco et al., 2005; Janvier et al., 2007; Shoo et al., 1991). Aligning with the Canadian Nurses Association Position Statement on evidence-informed nursing practice and decision-making (Canadian Nurses Association, 2010), the aims of my paper were: 1) to synthesize the available evidence about the outcomes of EPT infants (defined as infants born ≤25 weeks gestational age) at preschool age (defined as 3 to 5 years old, prior to school entry); 2) to integrate the literature with analysis of the outcomes of EPT infants specific to the NICU at BC Women’s Hospital, Vancouver, British Columbia, Canada; and 3) to critically analyze the available literature for its usefulness for nurses working with families in NICUs. Potential mechanisms for knowledge translation within BC Women’s Hospital NICU are also described. 1.5 Summary This chapter introduced my SPAR project and provided relevant background information, including the wider context of preterm and EPT birth in Canada and British Columbia. The 7  rationale for this project is provided, through situating the project’s relevance for nursing and parents, and the three aims of the project are stated. In the next chapter I present a review of the literature pertaining to short and longer-term outcomes reported for the EPT and VPT infant population.  8  Chapter 2: Literature Review 2.1 Introduction This chapter provides a brief overview of the literature pertaining to potential outcomes associated with the EPT infant population. The chapter begins with a description of longer-term morbidity indicators, as well as critical antecedents and correlates associated with morbidity in the EPT and VPT infant population. Finally, changes in the rates of key outcomes over the past 20 years are described.2.2 Neonatal Outcomes 2.2.1 Neonatal Morbidity Infants born at 25 weeks gestational age or less are at the highest risk for neonatal morbidity including bronchopulmonary dysplasia (BPD), retinopathy of prematurity (ROP), intraventricular hemorrhage (IVH) and periventricular leukomalacia (PVL) (Jarjour, 2015). In addition to these four problems, other neonatal morbidities associated with extreme prematurity are patent ductus arteriosus (PDA), necrotizing enterocolitis (NEC) and sepsis (Austeng et al., 2010; Wilson-Costello et al., 2007). Neonatal morbidities are associated with poor short and long-term neurodevelopmental outcomes (Laughon et al., 2009; Mitha et al., 2013). Having one of BPD, ROP, or brain injury doubled infants’ risk for adverse outcomes and having two morbidities tripled the risk for adverse outcomes, with sepsis being a weaker predictor of poor outcomes in EPT infants (Schlapbach et al., 2011; Schmidt et al., 2003). Specific neonatal outcomes have also been found to have unique risk factors; for example, hearing loss in preterm infants has been associated with prolonged ventilation, PDA ligations, treatment for hypotension, antenatal and postnatal infections, craniofacial abnormalities, and family history (Robertson, Watt & Dinu, 2009). 9  2.2.2 Long-term Morbidities General developmental delays and a range of minor to severe impairments in motor, cognitive, language, and sensory-communication domains, as well as in children’s social and behavioural development are characteristically found in children born EPT. Other areas that have been studied are children’s growth, health, and quality of life. 2.2.2.1 Motor Function There is a range of motor difficulties reported for preterm infants from mild delays in crawling to the most severe motor disability, which is cerebral palsy (CP) (Spittle & Orton, 2014). In a meta-analysis of motor outcomes for very preterm (VPT) infants born at <32 weeks gestation, de Kieviet et al. (2009) found VPT children between 6 months and 3 years old scored almost 15 points or one standard deviation (SD) lower than term children, and they continued to perform more poorly than term children on standardized motor tests through school. It is increasingly recognized that all children born preterm have a different motor developmental trajectory compared to children born at term (Van Haastert, de Vries, Helders, & Jongmans, 2006).  CP is an umbrella term used “to describe a group of disorders of the development and posture, causing activity limitations, which are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain” (Bax et al., 2005, p.572). The diagnosis of CP is based on clinical assessment of neurological abnormalities and function rather than on laboratory test or neuroimaging. Spittle and Orton (2014) indicated that a diagnosis of CP is generally not given until 2 years of age, and requires ongoing evaluation, as there are cases in the literature describing the disappearance of CP. CP is classified based on the motor type (related to spasticity) and topography (related to the region of the body affected) as well as describing the 10  functional outcomes (Spittle & Orton, 2014). See Appendix A for the classification of the functional outcomes related to CP in the Gross Motor Functional Classification System. The prevalence of CP rates in the general population was reported between 0.1% and 0.2% compared to 14.6% for EPT infants born ≤27 weeks, and 6.2% for VPT infants born between 28 and 31 weeks gestational age (Himpens, Van den Broeck, Oostra, Calders & Vanhaesebrouck, 2008). Preterm children without CP may also have difficulty with balance, coordination, motor control, and visual motor integration (Edwards et al., 2011). These children may be diagnosed with Developmental Coordination Disorder (DCD) at school age if they meet four criteria set out in the Diagnostic and Statistical Manual of Mental Disorders (DSM-V). In the general population the rate of DCD has been reported as between 5% and 6%, compared to between 9.5% and 51% in VPT or EPT cohorts (Ferrari et al., 2012). The diagnosis of DCD is based on the standardized test scores of motor function at school age where “performance in daily activities that require motor coordination is substantially below that expected, given the person’s chronological age and measured intelligence” (Ferrari et al., 2012, p.2157); it also includes an assessment of activities of daily living and intelligence. Most investigators that studied DCD in preterm children agreed that DCD could be diagnosed between 5 years and 8 years of age, (Davis, Ford, Anderson, & Doyle, 2007; Edwards et al., 2011; Goyen & Lui, 2008; Roberts et al., 2010). In children with non-CP motor impairment, mild motor impairment is defined as scoring between the fifth and fifteenth percentile or 1 SD below the mean on standardized motor testing tools, whereas moderate impairment is defined as scoring below the fifth percentile or 2 SDs below the mean. In a meta-analysis, Edwards et al. (2011) found that children born VPT (≤31 11  weeks gestation) were greater than six times more likely to have a moderate motor impairment, and almost nine times more likely to have a mild motor impairment than term infants. The prevalence of moderate and severe motor impairments in children born EPT and VPT make CP an important neurodevelopmental outcome to study. However, equally as important, are the lesser studied, milder impairments that have a large impact on academic function and daily lives. These outcomes are a crucial area of investigation and awareness for nurses, parents, community therapists, and educators. In a geographically defined population of term and preterm school age children, Lingam et al. found that attention problems, social communication problems, reading and spelling difficulty, self-reported depression, and parent reported mental health difficulties were associated with DCD and milder motor impairments (Lingam, Jongmans, Hunt, Golding, & Edmonds, 2012). 2.2.2.2 Language Abilities Language functions can be divided into simple and complex functions that differentiate between vocabulary and the acquisition of short phrases and the integration across the five different language components (semantics, phonology, morphology, syntax, and pragmatics) (Aylward, 2005). Speech and language is measured in infants and children using age-appropriate standardized tests that assess expressive and receptive language. The most common types of delays in preterm children are expressive language delays, receptive language processing, articulation, and deficits in phonological and short-term memory (Barre, Morgan, Doyle, & Anderson, 2011; Foster-Cohen, Friesen, Champion, Woodward, 2010; van Noort-van der Spek, Franken, & Weisglas-Kuperus, 2012). In EPT born children, more complex processes, including understanding syntax, abstract verbal skills, verb production, mean length of utterance, auditory discrimination, imitations of articulatory patterns, difficulty following complex instructions, poor 12  organization, and language processes and reasoning were all found to be more difficult than for term born controls (Barre et al., 2011; Wolke & Meyer, 1999). This is significant for children’s future understanding and learning because these complex language functions are critical for communication, joint attention academic pursuits, and social interaction (Wolke & Meyer, 1999). In a systematic review and meta-analysis of children born preterm at <37 weeks gestation, significantly lower scores were found on both simple and complex language function tests, with significantly increased group differences in complex language functions from 3 years to 12 years of age (slope = -0.05; p = .03) (van Noort-van der Spek et al., 2012). In a meta-analysis of VPT born children, expressive and receptive language problems were found to persist into school age which suggested ongoing language difficulties in this population (Barre et al., 2011). Factors that have been associated with language impairments and delays are: lower gestational age, higher illness severity at birth, duration of hospitalization, neonatal morbidities including IVH and PVL, hearing status, gender, age at assessment, and lower parental socioeconomic status (SES) and impoverished environments, as well as pre-existing impairment such as hearing loss and CP (Marston, Peacock, Calvert, Greenough & Marlow, 2007; van Noort-van der Spek et al., 2012). 2.2.2.3 Cognition and Cognitive Domains Cognitive abilities include intelligence and a complex collection of cognitive domains, (executive function, processing speed, visual-spatial abilities, language, attention, memory, and learning) that affect academic performance (Anderson & Doyle, 2014). Several differences have been found in the cognitive abilities and academic performance of preterm born children compared to term born children. Generally, VPT born children are reported to be less school 13  ready, more likely to repeat a school grade, and more likely to attend a school for children with special needs and require special education interventions (Johnson et al., 2009). The basis of a neuropsychological assessment is an assessment for intelligence (IQ) (Anderson, 2014). Intelligence cannot be measured before 3 years old; therefore, in studies that assess children at younger ages, overall developmental tests are used. Nonetheless, these developmental tests are influenced by learning opportunities in a child’s environment and have limited predictive value (Synnes, 2015). 2.2.2.3.1 Executive Function Executive function refers to an organized set of high level cognitive skills required for purposeful, goal-directed behaviour (Anderson, 2014). Children that have difficulties with executive function have problems with initiating activities, organizing, generating ideas, problem solving, working memory, inhibition, and attention. Executive function affects IQ and knowledge acquisition and is linked to cognition, everyday behaviour, social interaction, and academic success (Aylward, 2005). In a systematic review of executive function, preterm born children performed significantly lower on measures than term controls (Aarnoudse-Moens, Weisglas-Kuperus, van Goudoever, & Oosterlaan, 2009), and in a meta-analysis researchers found a significant positive correlation between executive function and gestational age (Mulder, Pitchford, Hagger, & Marlow, 2009). 2.2.2.3.2 Visual Perceptual Difficulties Visual perceptual difficulties have been reported in EPT and VPT born populations. Molloy et al. (2013) found that EPT born adolescents performed significantly below term controls and were three times more likely to have a visual perceptual impairment. The Beery test of Visual Motor Integration (VMI) is a widely used tool that assesses visual processing from 2 14  years old and above. VPT children were found to have significantly lower visual perceptual abilities than term controls using the VMI in school age children and adolescents (Anderson, 2014; Torrioli et al., 2000). 2.2.2.3.3 Memory EPT and VPT born children have been reported to have deficits in all memory domains. In a large cohort study of VPT born 7-year-olds, Omizzolo et al. (2013) reported significantly lower scores on immediate memory, working memory, and learning ability for the preterm group than for term controls, and the preterm group was 2.1 to 3.5 times more likely to have memory impairment than the control group. 2.2.2.3.4 Processing Speed Processing speed is described as the time required to decipher and to respond to incoming information and serves as the basis for abilities in other cognitive domains (Anderson, 2014). VPT born children, including those ETP, have been shown to have slower processing speed at all stages of development, up to adulthood; researchers have speculated that while capable of exhibiting age-appropriate response times, preterm born children have more difficulty with efficiency as task complexity increases (Strang-Karlsson et al., 2010). 2.2.2.3.5 Attention Difficulties Attention difficulties are arguably one of the most common issues for preterm born children. Attention is a core cognitive construct that includes capacity to focus, sustain, shift, and divide attention, and is used to acquire new skills and knowledge (Anderson et al., 2011). In a large Australian cohort of 8-year-olds, EPT born children performed significantly below term peers in selective, sustained, encoding, shifting, and divided attention. EPT born children were 15  2.4 times more likely to have impairments in selective and sustained attention, and 3 times more likely to have impairments in shifting and divided attention (Anderson et al., 2011) 2.2.2.3.6 Academic Achievement Studies of VPT born children have consistently reported poorer levels of academic achievement than term controls, particularly in reading, spelling, and mathematics (Hutchinson, De Luca, Doyle, Roberts & Anderson, 2013). In the largest longitudinal cohort study of EPT infants, born £25 weeks gestation in England and Ireland, children at 11 years old performed 1 SD below term born classmates for reading, and 1.7 SD for mathematics (after excluding children with severe cognitive impairment) (Johnson et al., 2009). Johnson et al. (2009) found that 52% of the preterm born 11-year-olds had reading impairments, and 70% had mathematics impairments, compared to less than 15% of the control group. From a historical standpoint, cohorts of preschool-aged children born preterm in the early 1990s were found to have cognitive scores 15 to 18 points lower than term born controls, with weaker performance in language, motor, memory, visual motor, and perceptual tasks (Anderson & Doyle, 2004). In a Canadian sample of extremely and VPT infants born <800g, Whitfield et al. (1997) found that, at adolescence, 41% had a learning disability in more than one area, compared to age matched term born controls. In the most recent meta-analysis of school age outcomes, including publications up to 2009, researchers found a mean difference of 11.9 points (95 % CI: 10.5, 13.4) between preterm born children and term controls, representing a 0.8 SD difference on standard measures of IQ (Kerr-Wilson, Mackay, Smith & Pell, 2012). In this analysis, a greater difference was found (13.9 points, 95% CI: 11.5, 16.2) for infants born <28 weeks, and Kerr-Wilson et al. (2012) documented no improvement in IQ for the preterm infants over the 25-year period of data collection. 16  In the EPICure cohort of English and Irish infants born £25 weeks gestational age in 1995, 21% of the infants born EPT had severe intellectual impairment and 25% had a mild intellectual impairment at 6 years old. When these impairment rates were adjusted to their classmate controls, the rates of impairment increased to 41% and 31% respectively (Marlow, Wolke, Bracewell & Samara, 2005). Greater variation in severe cognitive impairment rates have been reported and are estimated to fall between 10% and 35%, depending on the IQ measure (Anderson & Doyle, 2008). While there is conflicting evidence about whether cognitive function improves over time (Johnson, 2007), academic function is consistently lower for 10-year-old children born VPT preterm than expected based on the children’s IQ scores. Anderson (2014) suggested that these inherent differences in cognition of children born VPT represent a possible cognitive phenotype. The cognitive profile of preterm infants and academic achievement are likely affected by biological risk, genetics, environment, and sex, and researchers have associated academic underachievement with decreasing gestational age (Aarnoudse-Moens, et al., 2009). 2.2.2.4 Social and Behavioural Development In addition to intellectual functioning, behaviour, emotional status (temperament and ability to self-regulate), social functioning (ability to form and maintain relationships with peers and adults), and adaptive functioning (independence and ability to handle common demands in life) all contribute to understanding the developmental outcomes for EPT infants and preterm infants (Msall & Park, 2008). Overall, VPT and EPT born children at school age were at higher risk for a range of behavioural, social, and adaptive problems compared with term born classmates. In the largest meta-analysis of behaviour in preterm born children between age 5 and 14 years, Bhutta et al. 17  (2002) cited the prevalence of both internalizing behaviours (anxiety and social withdrawal) and externalizing behaviours (attention problems, hyperactivity, oppositional and disruptive behaviour) in this population. Several parent report questionnaires are available to describe early social, emotional, behavioural, and adaptive abilities; the most commonly used questionnaire for preschoolers is the Child Behaviour Checklist (CBCL) (Samara, Marlow, & Wolke, 2008). A similar type of tool is the Strengths and Difficulties Questionnaire (SDQ) that is validated for use in school age children, and also uses standardized norms and cut-offs for behaviours that are considered in the clinically significant range (Msall & Park, 2008). Similarly to cognitive outcomes, the impact and incidence of behavioural problems may not be evident until school age.  Many problems that are diagnosed using the DSM-V, including attention deficit and hyperactivity disorder (ADHD) and autism spectrum disorder (ASD), cannot be assessed until children reach a certain level of maturity at school age. Those diagnostic tools are recommended as they have the greatest sensitivity to sub-type differentiation and increasingly support identification of a preterm born behavioural phenotype (Johnson et al., 2010). 2.2.2.4.1 Behaviour Behavioural problems are estimated to occur in 19% to 32% of children born EPT (Johnson & Marlow, 2011). In the English national cohort EPICure Study of EPT born children, assessed at 6 years of age, 19.4% of EPT children (23.2% of boys and 15.6% of girls) compared to 3.4% of classroom peer controls (boys 4.6% and girls 2.5%) had total behavioural scores in the clinical range (defined as a score >90 percentile) on the parent and teacher report for the SDQ (Samara et al., 2008). Emotional disorders (anxiety more than depressive disorders) were 18  reported in 9% of the EPT children compared to 2% of term born controls (Johnson et al., 2010). In a further analysis of this cohort, Johnson et al. (2010) found that externalizing behaviours could be accounted for by cognitive deficits, but attention and emotional problems were not. Overall, the prevalence of behavioural problems has been reported at greater frequency at lower gestational ages (Anderson & Doyle, 2003; Johnson & Marlow, 2011). In their analysis of psychiatric disorders of EPT and VPT born children, including very low birth weight infants, Johnson and Marlow (2011) found consistencies among study results that confirm the “preterm behavioural phenotype”, characterized by inattention and hyperactivity, social and emotional problems, and a greater risk for internalizing rather than externalizing problems. 2.2.2.4.2 Attention Deficit and Hyperactivity Disorder (ADHD) According to Johnson and Marlow (2011), ADHD is the most prevalent and frequently studied psychiatric disorder in the preterm born population. In 2000, the prevalence estimates of ADHD were 17% to 20% for children from the EPT population with a higher prevalence for children born at lower gestational ages (Taylor, Klein, Minich, & Hack, 2000). In the most commonly cited meta-analysis of behavioural outcomes in children born VPT, Bhutta et al. (2002) found that the preterm born cohort had a 2.65-fold higher chance of developing ADHD during school age compared to term controls, as well as a higher risk for externalizing behaviours such as aggression and disruptive behaviours. Some features of ADHD that are seen in preterm born children indicate a different phenotype than term-born children (Johnson et al., 2010). Johnson et al. (2010) described a lack of male prevalence, a lack of association with comorbid conduct disorders, and a weaker association with sociodemographic and family risk, all factors seen in the term born population. In addition, VPT born children, including EPT children, were found to have a greater risk for 19  symptoms of inattention over hyperactivity with increased risk for ADHD subtype inattention, which is inattention characterized by social difficulties related to shyness, withdrawal, internalizing problems, an absence of aggression/delinquent behaviour, and academic difficulties with primary deficits in working memory and processing speed (Johnson et al., 2010). 2.2.2.4.3 Autism Spectrum Disorder (ASD) The prevalence of ASD was estimated at approximately 0.6% in the general population (Fombonne, 2009). EPT born children have been noted to screen at rates of 12% to 25% higher for autistic features than term born controls, with the rates of confirmed diagnosis later in childhood at 3.6% to 8% higher in EPT children than term born children (Limperopoulos at al., 2008). Although researchers have shown an increased risk for autistic-like features in children born preterm, the difference in screening rates and confirmed diagnoses led some to suggest that problems with socialization may be qualitatively different and mediated by inattention and distractibility (Hille et al., 2001), and lower IQ (Johnson et al., 2010). Other studies have explored social functioning in relation to parent-child interaction. Wolke et al. (2010) linked problems with early feeding, respiratory organization, and state organization to difficulties maintaining positive social relationships with caregivers, and proposed that these early relationship disruptions could be related to the development of behavioural and socio-emotional disorders in EPT born children. 2.2.2.5 Sensory-Communication Vision and hearing problems are characterized under sensory-communication. 2.2.2.5.1 Vision Retinopathy of prematurity (ROP), cerebral visual impairment, impaired visual acuity, contrast sensitivity, myopia, strabismus, visual field defects, and colour vision deficits are more 20  common in preterm born infants than in the term born population (O’Connor, et al., 2007). Some vision problems can be identified in infancy such as ROP, myopia, and strabismus, while others can be identified in early childhood, such as colour vision deficits. Others, such as visual acuity, require development to be complete in later childhood (O’Connor, et al., 2007). ROP, potentially the most severe vision problem in preterm infants, is confined to the developing retinal vasculature, and if left untreated, may result in retinal detachment and blindness (Schiariti, Matsuba, Hoube & Synnes, 2008). In a large Australian cohort of EPT born adolescents, Molloy et al. (2013) found that 43% had at least one visual impairment, compared to term controls, as well as elevated rates of impairment in stereopsis (26% versus 10%) and convergence (16% versus 6%). Exotropia and refractive errors are three and four times more common in preterm born children than in term born controls (O’Connor et al., 2002). Contrast sensitivity and visual field deficits, specifically in peripheral vision, have been reported in preterm born school-age children at a higher rate than term born children (O’Connor et al., 2004). Functionally, visual acuity with both myopia and hyperopia have been confirmed using behavioural testing in school-age children and shown to persist into adult life (O’Connor et al., 2004). These differences were associated with phototherapy, intrauterine infection, and ischemic brain legions (O’Connor et al., 2007). In a local retrospective review of visual outcomes of infants born between 1992 and 2002 with ROP at BC Women’s Hospital, children born weighing <1250 grams had an increased rate of ROP from 7% to 14%, while the rate of visual impairment stayed stable during the 10 year period at 1% (Schiariti et al., 2008). Preterm born children are at risk for visual problems related to ROP, refractive errors, or PVL (Johnson & Marlow, 2014). Other risk factors independently associated with strabismus 21  include family history, birth weight, maternal age, smoking during pregnancy, ethnic origin, and developmental quotient (O’Connor, 2002). 2.2.2.5.2 Hearing Hearing loss is one of the four major disabling conditions in VPT born children, (including CP, intellectual impairment, and vision impairments). Hearing affects speech, language development, academic achievement, and social-emotional development (American Academy of Pediatrics, 2007). Hearing can be tested through auditory brain stem response from birth to 9 months of age, specific age-appropriate types of audiometry used between 9 months and adulthood, and tympanometry and oto-acoustic emissions conducted at all ages (Purdy, 2000). Infants with a severe hearing loss, with a threshold of greater than 90 decibels at and above 1000 Hz, have a difficult time acquiring and comprehending speech. Moderate to severe hearing loss is defined as the ability to hear the quietest sounds at 50 dB to 90 dB in the better ear and is associated with impaired intelligibility and decreased verbalization and comprehension (Copland, 1995). In a recent national study of EPT children born in the Netherlands between 1998 and 2012, the risk of hearing loss detected by 4 months corrected age was found to increase with decreasing gestational age (1.2% to 7.5% from 31 to 24 weeks) (van Dommelen, Verkerk, & van Straaten, 2015). 2.2.3 Antecedents and Correlates The outcomes for all preterm infants depend not only on the infant’s biology, but also on available technology, and economic and cultural factors (Zlatohlavkova et al., 2010). Children born EPT exhibit a range of neurodevelopmental outcomes that are thought to be influenced by a combination of risk factors that include gestational age, sex, neonatal illness severity, subsequent illness, and socio-demographic and psychosocial factors, including maternal health and well-22  being (Salt & Redshaw, 2005). The immature neurobiological system of preterm infants born at £25 weeks is consistently found to be the primary risk factor for delay and impairment in children’s motor, cognitive, and behavioural functions (Saigal & Doyle, 2008; Samara, Marlow & Wolke, 2008; Wood, Marlow, Costeloe, Gibson & Wilkinson, 2000). Environmental factors include social risk (for example, impoverished neighborhoods, housing instability, and maternal depression), family capital (for example, parental marital, education and employment status), and SES (for example, income level and ethnicity); those elements have all been linked to long-term outcomes of EPT infants. Children, who were born preterm due to maternal disadvantage, are more at risk for lack of postnatal care in the form of nutrition, therapy, and adequate parent-child interaction. The term ‘double jeopardy’ has been coined for children who are disadvantaged by their prematurity and their low SES background (Escalona, 1982; Msall & Park, 2008). In the Canadian context, gestational age, sex, being born outside a tertiary care centre (out-born), illness severity, BPD, NEC, ROP, late-onset sepsis, abnormal neuroimaging, and NICU site were significantly associated with children’s adverse outcomes (Synnes et al., 2016). In another study, the likelihood of a favorable outcome for children born between 22 and 25 weeks gestation was associated with gestational age, as well as female sex, exposure to antenatal corticosteroids, single birth, and birth weight (Tyson, Parikh, Langer, Green, & Higgins, 2008). Over the past 10 years, neonatal follow-up studies have begun considering some of these associated factors, including protective factors, in trying to understand underlying mechanisms of the long-term outcomes for EPT infants. 2.3 Outcome Trends over Time While the mortality rate of EPT infants has decreased significantly over the past 30 years, the short-term morbidity related to BPD, septicemia, PVL and ROP remains high (Bockli, 23  Andrews, Pellerite & Meadow, 2014). In a Canadian study that compared the adjusted risk of short-term morbidities of EPT infants, born from 1996 to 1997 with those born from 2006 to 2007, at discharge from 15 centres, illness severity at birth and ROP decreased over the ten year period (Shah et al., 2012). However, in this study Shah et al. (2012) found no change in septicemia rates, and more importantly, an increase in IVH, PDA and BPD. These were important findings considering these perinatal morbidities are significant risk factors for adverse long-term neurodevelopmental outcomes for infants born EPT.  Some of the practice changes that occurred in the mid to late 1990s were the introduction of antenatal steroids and antenatal magnesium sulphate, postnatal steroids, improvements in mechanical ventilation, and surfactant administration, as well as better detection methods for neurological findings and PDAs (Fanaroff, Hack & Walsh, 2003). Researchers who noted changes in outcomes over time have implicated these practice changes (Abily-Donval et al., 2015; Wilson-Costello et al., 2015; Zeitlin & Ancel, 2011). With regards to the longer-term neurodevelopmental outcomes, there are further inconsistencies in the literature. A study of VPT children born at ≤32 weeks gestation in a French level three NICU assessed 2-year outcomes (for infants born in 2000, 2005 and 2010) and reported a significant improvement in motor outcomes (decrease in CP rates from 12% in 2000 to 1% in 2010, p < 0.001), a non-significant improvement in psychosocial behaviour, and unchanged cognitive outcomes (Abily-Donval et al., 2015). A population-based Australian study of children born at ≤27 weeks gestation compared 2-year-old outcomes for infants born in 1991/1992, 1997 and 2005 and reported that severe developmental delay decreased from 14.8% to 3.7% from 1997 to 2005 and the rates of severe disability decreased from 15.4% to 3.7%. However, researchers found the rates of CP, blindness and deafness did not change over time 24  (Doyle, Roberts & Anderson, 2010); that finding suggests an increase in mild and moderate impairments.  In a prospective English national cohort study, the outcomes of EPT children were compared at 3 years for infants born in 1995 and 2006 (Moore et al., 2012). Moore et al. (2012) found that survival, without a disability, increased from 23% to 34%; however, there was no difference in survival with a severe disability because proportions changed only from 18% to 19% between the two cohorts. In contrast, one study showed no changes or worsening outcomes over time. In a multi-centre retrospective analysis that compared children born ≤24 week gestation between 1999 and 2001 with those born between 2002 and 2004, Hintz et al. (2011) found that there was no statistically significant change in rates of moderate to severe CP, severe vision and severe hearing impairment, and cognitive delay. Other studies have also shown a trend toward worsening neurodevelopmental outcomes; however, these studies focused on cohorts of EPT and VPT born children who were also born small for gestational age (Claas et al., 2011; Synnes et al. 2010). Synnes (2015) indicated that birth weight-defined cohorts were more popular in the 1980s, when birth weight could be determined more accurately than gestational age. Previous study findings are limited by including children who were growth restricted in utero and have demonstrated worse neurodevelopmental outcomes and possibly worsening cognitive outcomes (Claas et al., 2011; Synnes et al., 2010). Overall, the rates of traditionally tracked disabilities, such as CP, have not changed; however, significant and disabling behavioural and learning challenges are increasingly recognized in EPT born children (PCMCH, 2015). Some researchers have proposed that trends 25  over time may be different in geographically and culturally distinct populations (Zeitlin & Ancel, 2011). 2.4 Summary This chapter highlighted various neonatal morbidities, including BPD, ROP, IVH, PVL, PDA, NEC and sepsis, and their relationships to children’s longer term problems in motor function, language, cognition, social and behavioural development, vision and hearing. The prevalence of each documented potential outcome was reported in relation to various ranges of impairment. Outcomes were described as being related to a combination of biological, economic and cultural factors, as well as available technology. The state of the literature for neurodevelopmental outcomes was briefly explored and the information presented highlighted trends including decreasing mortality, stable rates of impairment, and persistently high overall morbidity rates. Several inconsistencies in the literature were identified. In the next chapter I describe the methods for the integrative review. 26  Chapter 3: Methodology 3.1 Introduction This chapter describes the methodology used to carry out this project and the rationale for the chosen methods. The first section states the review question, defines the population and describes the study design. Later sections describe the process for executing my project. Finally, this last section of the chapter outlines the process of integrating the findings. In this project I have conducted an integrative review of literature for the outcomes of EPT born infants, assessed at 3 to 5 years old, using available literature on functional outcomes and parents’ perspectives of their children’s development. I have also integrated the literature with the available neurodevelopmental outcome data on EPT born infants seen through the NFUC at BC Women’s Hospital. The outcomes of EPT born children prior to 3 years of age provide a limited understanding of the longer-term impact of prematurity on children’s developmental trajectories because researchers and clinician agree that, at best, only severe neurodevelopmental impairment rates can be estimated earlier in development (Synnes, 2010). Other researchers have expressed concerns regarding the generalizability of long-term outcomes of EPT school age children to the cohort of infants presently being cared for in the NICUs (Watts & Saigal, 2006). Considering that this paper includes the implications of the findings for both nurses and parents, I have recognized the importance of a definition for neonatal outcomes that moves beyond outcomes that only meet the criteria for significant impairment. Thus, I have included: neurodevelopmental outcomes, physical and health outcomes, functional developmental outcomes, and parent/teacher reports of outcomes. 27  3.2 Review Question The specific question that guided this review was, “For infants born ≤25 weeks gestation, what are their preschool outcomes at ages 3 to 5 years?” 3.3 Population For the purpose of this project, the outcomes of EPT infants who were ≤25 weeks gestation were chosen based on the eligibility criteria for BC Women’s Hospital NFUC. I chose a minimum age of 3 years old for this review, because prior to 3 years, only severe impairments can accurately be assessed and have predictive value for the future (Synnes, 2015). Cognitive abilities, including IQ and school readiness, cannot be tested and behavioural problems cannot be diagnosed prior to 3 years old. By age 5 years, some of the subtler problems that have been associated with EPT birth begin to become apparent. In addition to the types of outcomes that can be accurately described in preschoolers, examining outcomes in this age group also provides a relevant and judicious reflection of current NICU practices related to outcomes (Parikh, Langer, Green & Higgins, 2008; Zlatohlavkova, Kytnarova, Fleischnerova, Dokoupilova & Plavka, 2010; Zwicker & Harris, 2008). The most up-to-date and relevant information is important for nurses to share with parents who have infants currently being cared for in the NICU. 3.4 Design I chose an integrative review to methodologically integrate the results of differing research evidence on the developmental outcomes for EPT born infants, including functional outcomes and parents’ perspectives. Souza, Silva and Carvalho (2010) described an integrative review as the most comprehensive review methodology for its inclusion of theoretical and empirical literature, including experimental and non-experimental studies, to provide the most 28  complete understanding of a concept. A greater variety of research designs may expand the profoundness and richness of the conclusions about neurodevelopmental outcomes (Whittemore, 2005). I chose this review method because evidence-informed practice relies on detailed and accurate integration of previous empirical research, as well as a wider understanding of what constitutes knowledge (Rycroft-Malone et al., 2003) and aligns with the Canadian Nurses’ Association Position Statement on evidence-informed practice. To conduct this integrative review, I used Whittemore and Knafl’s (2005) methodology that adheres to a rigorous review process. Following their description of the process I identified the current problem and purpose of this project. I described the variables and the literature of interest. I confirmed the search strategy. I reviewed and evaluated the literature and I addressed data quality. I conducted the analysis by organizing the data sources alphabetically using a matrix, as described by Whittemore and Knafl (2005). I extracted the data, coded the data under individual headings and then displayed the findings in individual tables. Various themes emerged from the coded data pertaining to the utility of the studies. I drew the conclusions based on my findings from the integrative review. 3.5 Search Methods This integrative review of the literature covered a 10-year period, from 2006 to 2016. This time period was chosen for two reasons: firstly, to ensure that this integrative review was representative of current research; and secondly, with the intention of including infants with birthdates that reflect current NICU practices. I formulated my answerable question and developed a search strategy based on the PICO model that incorporates a population (EPT born infants), intervention or exposure (morbidity), 29  comparison (full-term and EPT infants) and outcome (developmental indicators between 3 and 5 years of age) (Richardson, Wilson, Nishikawa & Hayward, 1995). I identified the following initial key words based on my background literature search of areas of known impairment and areas of child development for preterm infants that differ from term infants, as well as my clinical experience working in the NFUC at BC Women’s Hospital. Initial key words included: extremely preterm, extreme prematurity, neurodevelopmental impairment, cerebral palsy, developmental coordination disorder, cognitive or learning disability or impairment, visual spatial processing, processing speed, executive functioning, language disorder or impairment, speech delay, behaviour, attention, attention deficit and hyperactivity disorder, self-regulation, autism, and sensory processing disorders. I worked with the nursing librarian at the University of British Columbia (UBC) between July 18, 2016 and November 14, 2016 to develop my search strategy and used database tools to locate the subject headings, MeSH headings, CINAHL headings, Emtree terms and thesaurus words. I reviewed subject headings in their tree structure to ensure headings matched the selected key words. I chose not to select subheadings to expand the search in an effort to keep the search specific and relevant. I entered key words and subject headings into each database and combined terms according to the PICO model using Boolean operators (Polit & Beck, 2008). I searched each database with five separate individual searches that corresponded to each specific outcome area including: neurodevelopmental outcomes and general health outcomes, motor outcomes, cognitive outcomes, language outcomes, and behavioural outcomes. I scanned the articles for related key terms and subject headings that I incorporated into the final search strategy for each 30  individual database. I searched all databases using the same strategy. Table 1 provides an outline of the final 96 key word search strategy with Boolean operators. I combined the five individual searches in each respective database for the purpose of the final comprehensive search that was run November 8, 2016. The search was limited to human studies and English papers. I did not limit the search to available papers to ensure I did not miss relevant articles that were available through other vendors than the UBC library.31  Table 1. Keyword Search Strategy with Boolean Operators Concept Population Outcomes Motor Cognitive Language Behaviour Keywords (prematur* OR preterm*) ADJ2 (infant* or birth)   extreme* OR [(22 or 23 or 24 or 25 or 26) adj1 week*] ADJ1 gestation outcome*ADJ2 (prematur* OR preterm*)  development* ADJ2 (delay* OR disab* OR disorder*)  neurodevelopmental ADJ1 (outcomes* OR disorder* OR disab* OR delay*)  quality N2 life or wellbeing or well-being or comfort  (personal or life) ADJ2 satisfaction  activit* of daily living  functional ADJ2 (status OR level OR capacity OR ability)  physical exam OR health screen OR health related status indicators OR neonatal assessment   (vision OR hearing) ADJ1 (disord* OR impair*) cerebral palsy   quadriplegi* OR spastic quadriplegi* OR spastic hemiplegi* OR Spastic diplegi*  gait ADJ1 disorder  developmental coordination disorder   motor ADJ2 (delay* OR disorder* OR skills* OR development OR process*OR performance) cogni*OR intelligence OR “IQ”  (learning OR intellectual OR cognitive) ADJ1 (disorder* OR disab* OR function* OR impair*)  “neuro psychological outcome”  executive function*  processing speed (language OR speech OR communication OR articulation) ADJ1 (impair*OR disorder* OR develop* OR function* OR disab* OR delay*) child behavio?r*  autism spectrum disorder ASD  attention deficit activity disorder  ADHD  attention deficit disorder or ADD  self N1 (control or regulation)  sensation disorder*  OR  sensory processing disorder*  32  3.6 Data Sources I searched four major databases that are well recognized by health care professionals and the scientific community.  3.6.1 MEDLINE MEDLINE is a comprehensive database widely used by physicians, nurses, dentists, veterinarians, and allied health professionals. It covers major international biomedicine, dentistry, nursing, and health administration journals. I chose the Ovid SP interface for its ability to guide a precise search based on Medical Subject Headings, subheadings, and limits. 3.6.2 CINAHL CINAHL incorporates mostly English-language journal articles about allied health (including nursing), biomedicine, and healthcare. This database provided a narrower focus to the research topic and the most relevant body of articles for nursing. 3.6.3 PsycINFO PsycINFO provides systematic coverage of an extensive collection of scholarly publications relating to behavioural and social sciences. This was an important selection pertaining to the crossover of cognitive outcomes into the field of psychology. 3.6.4 Evidence-based Medicine Reviews (EBM) EBM covers seven evidence-based medicine databases. The ability to search keywords and subject headings resulted in a broader but less relevant search to my topic. 3.7 Article Selection I applied the following inclusion criteria for article selection: 1) articles that differentiated the analysis and reporting of outcomes of infants born £25 weeks from other groups (older gestational age born infants); 2) Articles that included clear descriptions of the assessment 33  protocol; 3) Articles that provided clear descriptions and definitions of impairment rates; 4) articles that incorporated population characteristics and medical treatments; and 5) articles published in English and between January 2006 and August 2016. I applied the following exclusion criteria: 1) studies that did not differentiate between the gestational age of extremely and VPT infant groups; 2) studies that grouped infants based on birth weight only, because there are separate risks associated with small for gestational age infants; and 3) studies of infants cared for in developing countries. The reference lists of retrieved studies were reviewed to identify any publications eligible for the review. Articles were later screened for their inclusion of preschooler age groups and parents’ perspectives, as the search aimed to include papers that described parents’ perspectives about outcomes for EPT born infants between the ages of 3 and 5 years. This was not explicitly delineated in the search protocol, as the definition of outcome was liberal enough to include these elements. Preschool age limiters were not used in the search with the intention of including research that may have been longitudinal and not uniquely focused on preschoolers, as well as to ensure that mislabeled articles were not missed. I ran the final search on November 9, 2016 in all four databases outlined above. The process of running the searches was iterative and each search was modified according to early results. I ran the preliminary sub-searches prior to merging the search to ensure the terms were locating appropriate articles for the question. Search terms were modified based on other articles’ key words and medical headings. After the final search was run the articles were imported into Refworks™, a reference management system. A total of 1776 articles were imported. One limitation of this reference system was that each group of database results was ported separately and duplicates were 34  Figure 1. Search Strategy and Article Selection Protocol removed at each step of importing a new set of references. Therefore, it is not possible to know exactly how many of the final articles came from each database. Where duplicates were located I kept the reference that was the most accurate and complete. Figure 1 provides a summary of the search strategy and article selection protocol.   35  A three-step process was used for article selection. A brief review of the title and abstract was used to eliminate articles from the original 1237 that were not directly related to long-term outcomes of preterm born infants. A second step involved examining articles based on the inclusion and exclusion criteria, to select only articles that looked at outcomes post discharge for EPT and VPT born infants. A third process involved reading the abstract and full article where necessary to eliminate articles that: 1) did not differentiate between the outcomes of infants born ≤25 weeks and older gestational ages in the study cohorts; 2) were based on birth year cohorts prior to 1999; and 3) failed to report outcomes for children assessed between 3 and 5 years of age. Five articles were found with a birth year cohort of 2000 onward. Four articles were located with a birth year cohort of 1999 onward. In order to deal with this potentially large variation in the number of articles to include in my final data set, I consulted with my SPAR supervisor and committee member and reviewed each article to determine whether clinic practices that were widely implemented in the mid-1990s and are now known to have affected the outcomes of infants born in the late-1990s, had been established. All studies that included 1999 birth year cohorts used an antenatal steroid policy, had decreasing postnatal steroid use, and had routine administration of surfactant for RDS. As a result, I refined my search strategy during the process to include 1999 birth cohorts. Because all of the infant populations born in 1999 received antenatal steroids and the units had implemented some of the more important practice changes that were found to alter the outcomes of infants in the mid-1990s the 4 studies for those cohorts were included. I also chose to include two studies from the Czech Republic after confirming that their practice methods were equivalent to those in other developed countries represented in the sample 36  of articles, including similar rates of antenatal steroid use and similar birth weights in their population. Those elements reflected similar prenatal care and maternal nutrition. I included one study that assessed children at five years six months to six years two months, after establishing that the study was conducted in Norway where the children attended preschool until 6 years old, after which they entered school. This aligned with my study question to assess the outcomes of children born EPT at preschool age. The study in question, was particularly well designed, had the highest quality rating, and was published in the Journal of Pediatrics. 3.8 Methodological Appraisal I considered all eligible articles for inclusion and I classified each study design based on the hierarchy of evidence (Polit & Beck, 2008). In this integrative review, I used my clinical experience to determine the validity and rigor of the evidence, and to help determine the utility for practice (Souza, Silva, & Carvalho, 2010). I evaluated the sources that reported results that appeared to be outliers compared to the major body of literature for methodological quality. Determining whether methodological quality was or was not accountable for divergent results was reasonable, considering the sampling frame incorporated diverse empirical sources (Whittemore & Knafl, 2005). Harbour and Miller (2001) asserted that the strength of the evidence provided by each study depends on the ability of the study design and execution to minimize the possibility of bias. The Scottish Intercollegiate Guidelines Network (SIGN) guidelines (2008) focused on the aspects of the study design and implementation that have a significant influence on the validity of the results and the conclusions. This grading system differs from the hierarchy of levels of evidence and was chosen because it not only incorporates the study design but also the quality of 37  the evidence (Harbour & Miller, 2001). I used the checklist specifically developed for cohort studies to help determine which level of evidence applied to each study (SIGN, 2012). 3.9 Analysis I used a multiple step process to analyze the articles that fit the selection criteria. First, I developed a protocol to systematically collect data from the studies. Second, I read through each article sequentially and extracted the required information to complete the protocol for data collection. I divided the studies based on their study design and methodologies. This data collection instrument included: 1) identification of the study; 2) methodological characteristics; 3) study findings; and 4) assessment of methodological rigour (Souza, Silva, & Carvalho, 2010). Appendix B outlines the protocol that was adapted from Souza, Silva and Carvalho (2010) and utilized. Third, I completed the SIGN Methodology Checklist III for Cohort studies to help ascertain the overall quality of the evidence and to make adjustments to the data collection protocol where I found omissions or discrepancies. For this integrative review, I used a matrix to organize key features of the study in a grid format (Polit & Beck, 2008). Thus, in the fourth step, I created a two-dimensional matrix and used the headings of my data collection protocol and the SIGN Methodology Checklist III for Cohort studies, as well as the knowledge I gained from my background literature search, to determine the elements that would be relevant for synthesizing my analysis of the research studies. Each article was revisited if the corresponding information was not available on my data collection tools. The matrix method supported a thematic analysis (Polit & Beck, 2008; Whittemore & Knafl, 2005). The matrix headings included: authors, publication date, country, cohort birth years, gestational age of study participants, age at assessment, number of NICUs and level of care included in the cohort, study methodology, aim of the study, sample size, follow-up 38  rate, exclusion criteria, survival definitions, assessment tools, parent questionnaires, control groups, blinding (where relevant and possible), impairment definitions, maternal and infant variables, major findings, and study strengths and limitations. Table 2 provides the abridged study matrix with the headings that were specifically relevant for further analysis and coding.39  Table 2. Abridged Study Matrix Author, Year and Country Cohort, Birth year, Gestational age, Sample size Study methodology Study question Follow-up rate, Exclusion criteria, Control group Age at assessment, Assessment tools Variables Baron et al. 2011 United States Single Level 3 NICU  2004-2006  up to 32+6/7 weeks  n=150 Observational, descriptive, prospective, single centre, cohort study Do preterms show neuropsychological impairment when compared to term comparison group? Is there a difference between the performance of <26 weeks GA with 26 to 33 weeks GA? Is there a meaningful difference between CA and CCA scores? 100%  none stated  yes 3 years to 3 years 11mo  DAS-II: Conceptual ability, executive function, memory and language VMI 5th edition: motor and visual motor skills Purdue Pegboard test of manual dexterity noun fluency action verb fluency Parent report questionnaires; BRIEF-P BASC-2 Maternal variables: maternal age, maternal education, ethnicity, C-section, prenatal steroids Infant variables: gestational age, birth weight, SGA, sex, surfactant, postnatal steroids, IVH, PVL, ventriculomegaly, ROP, BPD, sepsis NEC, PDA  De Groote, et al. 2006 Belgium EPIBEL (19 perinatal centres)  1999-2001  22 to 26+6/7 weeks gestation  n=92  Observational, descriptive, prospective population-based, cohort study What are the health and neurodevelopmental outcomes in NICU-surviving children born at 26 or fewer weeks gestation in a geographically defined region of Belgium from 1999-2000 at 3 years of age CCA? How do the outcomes compare to other population-based cohort studies? 84% but some info on 97%  out-born infants requiring transport  no 3 years (mean 36 months) neurological exam, global health history, vision and hearing, anthropometric assessment, Dutch version of BSID-II (MDI and PDI) Maternal variables: none specified  Infant variables; age, gender, plurality 40  Author, Year and Country Cohort, Birth year, Gestational age, Sample size Study methodology Study question Follow-up rate, Exclusion criteria, Control group Age at assessment, Assessment tools Variables Ishii et al. 2013  Japan Neonatal Research Network (48 Level III NICUs)  2003-2005  22 to 25+6/7 weeks  n=1057 Observational, descriptive, prospective, multi-centre, cohort study and systematic review What are the mortality and the neurodevelopmental outcomes of infants born at 22 and 23 weeks gestation? 74%   major anomalies  no 3 to 3 years 6 months   KSPD neurological exam vision and hearing test Maternal variables: PROM, antenatal steroids, transport, out-born, C-section Infant variables: GA, gender, multiple birth, morbidities: RDS, CLD, PDA, IVH, PVL, cystic PVL, infection, NEC, ROP, laser eye surgery/treatment. Kerstjens et al. 2012  The Netherlands Lollipop/ PCHC cohort (5 Level III NICUs)  2002-2003  24 to 35+6/7 weeks  1439 preterm Observational, descriptive, prospective, community based,  cohort study What is the influence of decreasing gestational age on the risk of developmental delay in a variety of developmental domains at 4 years?  81.40%  major congenital malformations syndromes and congenital infection  yes 3 years 7 months  to 4 years 1 month  Parent Report Questionnaire: Dutch ASQ - 4 year version Maternal variables: SES - mothers’ age, mothers’ country of birth and parents’ education  Infant variables: biological covariates, sex, multiple birth, SGA (<10%ile) Kytnarova, et al. 2011  Czech Republic Single Level 3 NICU  1999-2002  22 weeks to 27+6/7 weeks.  n=157 Observational, descriptive, prospective, single centre, cohort study What are the anthropometric parameters of EPT infants at 2 and 5 years old? 87%  none stated  yes 2 years and 5 years anthropometric parameters included: height, BMI, HC, body circumference and skin folds at 10 standardized sites Maternal variables: none specified  Infant variables: IVH, FAS 41  Author, Year and Country Cohort, Birth year, Gestational age, Sample size Study methodology Study question Follow-up rate, Exclusion criteria, Control group Age at assessment, Assessment tools Variables Leversen, et al. 2011  Norway Unknown  1999-2002  22 to 25+6/7 weeks  and  26 to 27+6/7 weeks  n=306 Observational, prospective national cohort study  non-experimental design 1. What is the occurrence of neurodevelopmental disability and cognitive and motor function at 5 years? 2. What is the prognostic significance of pre- and postnatal clinical characteristics and results of diagnostic examinations in NICU.    82%   1 child with down syndrome  no  5 years10 months    WPPSI-R: verbal IQ, performance IQ and full-scale IQ neurological exam CP: GMFCS M-ABC: manual dexterity, ball skills, and static and dynamic balance  hearing test/vision test Maternal variables: maternal health, pregnancy, delivery  Infant variables: NICU stay, NICU morbidity: SGA, prenatal steroids, postnatal steroids, RDS, BPD, IVH, PVL, ROP, sepsis, NEC, PDA Moore et al. 2012  England EPICure-1 and EPICure-2 (all Level III NICUs in England and Ireland  1995-2006  Cohort 2: 22 to 26+6/7weeks  n=576  Observational, descriptive, prospective, national cohort study 1. What are the outcomes at 3 years in babies born before 27 completed week's gestation in 2006?  2. What are the changes in outcome since 1995 for babies born between 22 and 25 weeks' gestation?  56%  none stated  yes 3 years   1995 cohort: BSID-II (MDI and PDI)  2006 cohort: BSID-III included motor, cognitive and language scales  children older than 42 months were administered WPSSI Maternal variables:  age, ethnicity, gravida Obstetrical variables: PROM, CAM, abruption, pre-eclampsia, cervical sutures, antenatal steroids Infant variables:  sex, plurality, GA, BW Neonatal treatment and morbidities: hypothermia, transfer, surfactant, postnatal steroids, BPD, NEC, treatment for ROP, infection, breast milk feeds, breast milk feeds at discharge, home oxygen 42  Author, Year and Country Cohort, Birth year, Gestational age, Sample size Study methodology Study question Follow-up rate, Exclusion criteria, Control group Age at assessment, Assessment tools Variables Ochiai et al.  2014  Japan Single Level 3 NICU  2000-2009  22 to 24+6/7 weeks  n=51 Observational, descriptive, retrospective, single centre cohort study What are the potential associations between changes in practice and survival or neurodevelopmental outcome and clinical outcomes of EPT infants at the limit of viability?   89.5%  congenital disorders  no  3 years   KSPD Maternal variables:  CAM/PROM, preeclampsia, induced for maternal factors (iatrogenic preterm delivery, tocolytic treatment, antenatal steroid, cesarean birth                               Infant variables:  sex, multiple birth, APGAR score, SGA, GA, BW, intubation at birth, surfactant administration, HFOV, indomethacin, PDA ligation, parenteral nutrition, transfusion Zlatohlavkova, et al. 2010  Czech Republic Single Level 3 NICU  1999-2003  22 to 25+6/7 weeks and 26 to 27+6/7 weeks  n=175 Observational Descriptive Prospective single centre cohort study  What is the gestational age-specific mortality and long-term outcomes of EPT infants after the practice change suggestion to lower the border of viability from 27 weeks to actively resuscitating at 24 weeks. Compare the survival rate and outcome free of major disability at 5 years of EPT infants 22 to 25 weeks (threshold of viability) to 26-27 weeks (viable infants).   89%  none stated  no  2 years  and 5 years neurological exam hearing: brain stem auditory evoked potentials ophthalmologic exam for ROP Stanford Binet Intelligence Scale Maternal variables: Mothers’ age, ethnicity, prenatal care antenatal steroids, multiple gestation and C-section  Infant variables: GA, SGA, gender, survival and impairment rate  Abbreviations: ASQ: Ages and Stages Questionnaire; BASC: Behavioural Assessment System for Children; BMI: body mass index; BRIEF: Behavioural Rating Inventory of Executive Function; BSID: Bayley Scales of Infant and Toddler Development; BPD: bronchopulmonary dysplasia; BW: birth weight; CAM: chorioamnionitis; CLD: chronic lung disease; CP: cerebral palsy; DAS-II: Differential Ability Scales Second edition; FAS: fetal alcohol syndrome; GA: gestational age; GMFCS: gross motor classification system; HC: head circumference; HFOV: high frequency ventilation; KSPD: Kyoto Scale of Psychological Development; IVH: intraventricular hemorrhage; M-ABC: Movement Assessment Battery for Children; MDI: mental developmental index; NEC: necrotizing enterocolitis; NICU: Neonatal Intensive Care Unit: PDA: patent ductus arteriosus; PDI: 43  Psychomotor developmental index; PROM: premature rupture of membranes; PVL: periventricular leukomalacia; RDS: respiratory distress syndrome; ROP: retinopathy of prematurity; SES: socioeconomic status; SGA: small for gestational age; VMI: Beery-Buktenica developmental test of Visual-Motor Integration; WPSSI: Wechsler Preschool and Primary Scale of Intelligence.44  Based on the variability and homogeneity of the studies that met the inclusion criteria, I categorized the articles using the following variables: the age at which children were assessed, the tools that were used, the impairment rate definitions, and the authors’ choice of reporting results as a range of gestational ages or for individual gestational ages. I chose gestational age based on my research question. I examined the results section of each study with a lens for outcomes of children born ≤25 weeks gestation. I created a second two-dimensional matrix specific to the study findings in order to reorganize the data into common outcome domains across the studies. The results were further categorized under the headings: Survival with or without impairment, impairment rates, developmental quotients, motor function, cognitive function, behaviour, sensory-communication function, growth, and health. Table 3 demonstrates the outcome domains assessed by each publication. While survival was not in the initial search strategy, 3 articles referred to impairment in a survival context, therefore I chose to include survival where results were specifically presented this way. The aim of this paper focused on a definition of outcomes that comprised the widest scope of outcomes parents may wonder about, which arguably may include survival. Finally, I examined the results and attempted to create a range of outcome scores, results, and impairment rates based on the available data from the data set. Ultimately, the results were integrated based on impairment rates.45  Table 3. Outcome Domains Assessed in Each Publication for Infants Born ≤25 Weeks Gestational Age Author(s), Year and Country Survival with or without impairment Impairment Rates Developmental Quotients Cognitive Function Motor Function Growth Health Behaviour Sensory- Communication Function Baron et al. (2011) United States    x    x  De Groote et al. (2007)  Belgium  x  x x x x x  Ishii et al. (2013) Japan x x.  x. x.    x Kerstjens et al. (2012)  The Netherlands   x       Kytnarova et al. (2011)  Czech Republic  x   . x    Leversen et al. (2011)  Norway  x  x x    x Moore et al. (2012) England x x x  x     Ochiai et al. (2014) Japan   x       46  Author(s), Year and Country Survival with or without impairment Impairment Rates Developmental Quotients Cognitive Function Motor Function Growth Health Behaviour Sensory- Communication Function Zlatohlavkova et al. (2010)  Czech Republic x.         BCWH  Neonatal Follow-Up Program 2014-2015 Biennial Report (2017), Canada  x        Abbreviations: BCWH: British Columbia Women’s Hospital47  3.10 Integration of the Findings Whittemore and Knafl (2005) stressed the importance of analytic honesty, for example, through good quality records that keep all of the investigator’s thoughts during the data interpretation phase, including data analysis decisions, and alternate hypotheses. I summarized the important elements of each subgroup to provide a comprehensive description of the developmental outcomes of EPT infants at preschool age (Whittemore & Knafl, 2005), and included parents’ perspectives where available. To compare the data from the primary sources and integrate and synthesize these findings with the data available from BC Women’s Hospital NFUC, I created several patterns and themes, as well as documenting relationships within the evidence. These pertained to the utility and accessibility of the evidence for nurses working with families, which will be further discussed in Chapter 5. 3.11 Summary In this chapter I described the methods used to conduct an integrative review of the literature to synthesize the neurodevelopmental outcomes of EPT infants born ≤25 weeks gestational age between 3 and 5 years old. Whittemore and Knafl’s (2005) integrative review methodology was applied to conduct a literature search of 4 databases, to develop an article selection protocol, to analyze the results the studies using a matrix and to integrate the findings using themes. In the next chapter I present my findings.   48  Chapter 4: Results 4.1 Introduction This chapter provides the results of the integrative review. This section begins by summarizing the study characteristics in the data set. The next section describes the highlights from integrating the studies’ findings with the results presented in BC Women’s Hospital Neonatal Follow-Up Program 2014-2015 Biennial Report (2017). Finally, this chapter describes the themes developed from the thematic analysis. 4.2 Characteristics of the Data Set 4.2.1 Study Sample Nine studies met the inclusion criteria. Figure 1 outlined the search outcomes and article selection protocol. 4.2.2 Aims The primary purpose of five of the studies was to assess the outcomes of EPT children between 3 and 5 years of age. Two of these studies assessed neurodevelopmental outcomes (Ishii, Kono, Yonemoto, Kusuda & Fujimura, 2013; Moore et al., 2006), one study assessed health and neurodevelopmental outcomes (De Groote et al., 2007), one study assessed neurodevelopmental disability as well as cognitive and motor function (Leversen et al., 2011) and one study assessed growth outcomes (Kytnarova et al., 2011). Of the remaining studies, two studies primarily focused on the association between changes in practice at the limits of viability and neurodevelopmental outcomes (Ochiai et al., 2013; Zlatohlavkova et al., 2010), one study assessed the influence of decreasing gestational age on the risk of developmental delay (Kerstjens et al., 2012) and one study assessed the rates of neuropsychological impairment compared to term controls (Baron, Erickson, Ahronovick, Baker & Litman, 2011). 49  4.2.3 Secondary Aims Six studies had secondary objectives. Two studies sought to contrast outcomes for infants at the limits of viability (22 to 25 weeks gestation) with those of infants considered viable (at 26 to 33 weeks gestation) (Baron et al., 2011; Zlatohlavkova et al., 2010). How the results of a primary study compared with other population-based studies and the literature in a systematic review was the focus of two other researchers (De Groote et al., 2007; Ishii et al., 2013). In one study researchers determined neonatal characteristics and morbidities that had prognostic significance for longer-term outcomes, and another research group evaluated changes in outcomes over a 10 year period (Moore et al., 2012). A tertiary objective was outlined in one study where researchers determined if a meaningful difference existed for corrected age and chronological age scores (Baron et al., 2011). 4.2.4 Study Design The samples for all nine studies consisted entirely of a non-experimental observational cohort design, including eight different cohorts. Most of the studies (n=7) were prospective (Baron et al., 2011; De Groote et al., 2007; Kerstjens et al., 2012; Kytnarova et al., 2011; Leversen et al., 2011; Moore et al., 2012; Zlatohlavkova et al., 2010) but two studies were retrospective (Ishii et al., 2013; Ochiai et al., 2014). Five studies were population-based national studies, including the Japanese Neonatal Research Network (Ishii et al., 2013), the Lollipop PCHC cohort (Kerstjens et al., 2012), the EpiCure-2 cohort (Moore et al., 2012), the EPIBEL cohort (De Groote, et al., 2007), and a Norwegian national cohort study (Leversen et al., 2011) The other four studies analyzed data from single tertiary care centres. One study also incorporated a systematic review of the literature (Ishii et al., 2013). 50  4.2.5 Quality Appraisal On the basis of the revised grading system for recommendations in evidence-based guidelines (Harbour & Miller, 2001), and the SIGN methodology checklist 3: Cohort studies (Sleith, 2012), two studies were appraised as high quality cohort studies with a low risk of confounding, bias or chance (Kerstjens, et al., 2012; Leversen et al., 2011), six studies were determined to be well-conducted cohort studies with a low risk of confounding, bias or chance (Baron at al., 2011; Ishii et al., 2013; Kytnarova et al., 2011; Moore et al., 2012; Ochiai et al., 2014; Zlatohlavkova et al., 2010), and one study was evaluated as a cohort study with high risk of confounding, bias, and chance (De Groote et al., 2007). While this last study was classified as a Level III, according to Levels of Evidence (Polit & Beck, 2008), I determined that it was not a well-designed clinical trial but a cohort study with limitations based on detection bias and attrition bias; the researchers also did not clearly address the possibility of confounding. An a priori decision was made to include all studies that met the search criteria regardless of methodological strengths and weaknesses, which is in keeping with the guidelines and methodology for an integrative review (Whittemore & Knafl, 2005). 4.2.6 Country of Origin Two primary investigators conducted studies in Japan (Ishii et al., 2013; Ochiai et al., 2014) and two investigators conducted studies in Czech Republic (Kytnarova et al., 2011; Zlatohlavkova et al., 2010). The majority (n=6) of the other studies occurred in Europe, including the Netherlands, England, Belgium and Norway. One study was conducted in the United States (Baron et al., 2011). 51  4.2.7 Study Samples A total of 3,913 preterm infants were assessed in these nine studies. This did not include the term controls used in four studies, due to variance in the way the sample sizes were reported. The follow-up percentage rates ranged from 56% to 100%, with 7 of the 9 studies having follow-up rates >80%. The majority of the studies focused on children born EPT with gestational ages of <28 weeks. As the inclusion criteria stated, all studies differentiated the outcomes of EPT children born £25 weeks gestation from the rest of their sample of preterm born children. Two studies each assessed outcomes of children born at the limits of viability, 22 weeks to 24 and 6/7 weeks and 22 weeks to 25 and 6/7 weeks respectively (Ishii, et al., 2013; Ochiai et al., 2014). Two other studies assessed children born between 22 weeks and 26 and 6/7 weeks (De Groote et al., 2007; Moore et al., 2012). Three studies assessed all children that met the criteria for EPT birth including infants born between 22 and 27 and 6/7 weeks gestation (Kytnarova et al., 2011; Leversen et al., 2011; Zlatohlavkova et al., 2010). One study assessed all children that met the criteria for VPT birth, including infants born between 22 and 32 and 6/7 weeks gestation (Baron et al., 2011), and another study assessed all children that met the criteria for preterm birth, including infants born between 24 and 35 and 6/7 weeks gestation (Kerstjens, et al., 2012). 4.2.8 Age at Assessments Most studies (n=6) assessed children at 3 to 4 years old, while the remainder of the studies (n=3) assessed children before school entry at 5 to 6 years old. 4.2.9 Types of Outcomes Described Four studies assessed all outcomes that would be used to ascertain impairment rates, including a neurological exam, a developmental assessment that included cognition or a 52  developmental quotient, and vision and hearing ability (De Groote et al., 2007; Ishii et al., 2013; Leversen et al., 2011; Zlatohlavkova et al., 2010). In addition, Leversen et al. (2011) assessed cognitive and motor function, and De Groote et al. (2007) and Zlatohlavkova et al. (2010) assessed growth and health. Six research protocols included neurological exams, five studies determined a developmental quotient that combined motor, cognition, and language domains, three studies ascertained a cognitive profile and motor abilities, and overall health and growth parameters were determined in two studies. Only one group of researchers studied behaviour (Baron et al., 2011). 4.2.10 Measures A wide range of tools and standardized tests were used to evaluate the outcomes described above. Developmental quotients were assessed using the Scale of Psychological Development (KSPD) in two studies (Ishii et al., 2013; Ochiai et al., 2014). In a number of studies, the Bayley Scales of Infant and Toddler Development, Second edition (BSID-II) (De Groote et al., 2007; Moore et al., 2012) and the Bayley Scales of Infant and Toddler Development, Third edition (BSID-III) (Moore et al., 2012), as well as the Ages and Stages Questionnaire (Kerstjens et al., 2012) were used. Cognitive assessments were performed using the Wechsler Preschool and Primary Scale of Intelligence-Revised (Leversen et al., 2011), the Stanford Binet Intelligence Scale (Zlatohlavkova et al., 2010), and the Differential Abilities Scale Second edition (DAS-II) (Baron et al., 2011). Motor function was assessed using the Movement Battery for Children (M-ABC) (Leversen et al., 2011) and the Visual Motor Integration Fifth edition (VMI) (Baron et al., 2011). Behavioural assessments were conducted based on parental report questionnaires using the Behaviour Rating Inventory of Executive Function – Preschool version (BRIEF-P), and the Behaviour Assessment System for Children 53  Second edition (BASC-2) (Baron et al., 2011). While these group of tests were specific to one developmental domain, each test targeted different abilities and constructs which made harmonizing the study’s results challenging. 4.2.11 Assessors Many studies used a multidisciplinary team of assessors to complete the testing (n=4). In five studies a psychologist completed the developmental assessment (De Groote et al., 2011; Ishii et al., 2013; Leversen et al., 2011; Ochiai et al., 2014; Zlatohlavkova et al., 2010), and in four of the studies a pediatrician or neurologist assessed the children (De Groote et al., 2011; Ishii et al., 2013; Leversen et al., 2011; Zlatohlavkova et al., 2010). In two studies a physiotherapist assessed motor function (De Groote et al., 2007; Leversen et al., 2011). Two research groups used parents to complete parental report questionnaires to assess overall development and behaviour (Baron et al., 2011; Kerstjens et al., 2012). Three individual studies did not clearly describe who was performing the overall developmental assessment, (Moore et al., 2012) the cognitive assessment (Baron et al., 2011), or the measurement of growth (Kytnarova et al., 2011), which negatively affected the quality of the findings. 4.2.12 Control Group Most researchers compared the outcomes of two groups of children born EPT based on differences in their gestational ages (De Groote et al., 2007; Ishii, 2013; Kerstjens et al., 2012; Kytnarova et al., 2011; Leversen et al., 2011; Zlatohlavkova et al., 2010). Four of these studies compared children born at ≤25 weeks gestation with those born at 26 and 27 weeks gestation (De Groote et al., 2007; Kytnarova et al., 2011; Leversen et al., 2011; Zlatohlavkova et al., 2010). One study compared the outcome data of children born EPT and VPT with those born as late preterm (Kerstjens et al., 2012). All these studies documented the outcomes of children born at 54  ≤25 completed weeks gestation compared to the population norms, which they described according to the standardized tests used to measure their outcomes, except Kytnarova et al (2011). That particular study compared the results of EPT born children to those of term born controls (Kytnarova et al., 2011). Three other studies also used term controls as a comparison group for outcomes of EPT born children (Baron et al., 2011; Kerstjens et al., 2012; Moore et al., 2012). 4.2.13 Blinding In four studies, assessors were at least partially blinded to infants’ background (Baron et al., 2011; Ishii et al., 2013; Moore et al., 2012; Zlatohlavkova et al., 2010). In one study authors specifically indicated that assessors were not blinded (De Groote, et al., 2007), and in four studies researchers did not address blinding at all (Kerstjens et al., 2012; Kytnarova et al., 2011; Leversen et al., 2011; Ochiai et al., 2014), which introduces the potential for bias. 4.3 Integrated Outcome Findings The small combined sample and heterogeneity within the data set limited my ability to integrate the results. The results presented in the Neonatal Follow-Up Program 2014-2015 Biennial Report (2017), were limited to impairment rates and normal development. I categorized the major study findings under the nine headings as outlined in Table 3: survival/mortality and impairment, impairment rates, developmental quotients, cognitive function, motor function, behaviour, growth, health, and sensory-communication function. Table 4 provides an outline of the major publication findings, categorized under the previously mentioned nine headings, that pertain specifically to outcomes of children born at ≤25 weeks gestational age, including the applicable results reported from the BC Women’s Hospital NFUC (Neonatal Follow-Up Program 2014-2015 Biennial Report, 2017).55  Table 4. Major Publication Findings Author(s), Year and Country Major Findings Relevant to Outcomes of Infants Born ≤25 weeks Gestation Baron et al. (2011) United States Cognitive Function: 81.1% of children born ≤25 weeks gestation had general GCA within normal limits (>85); however, they scored significantly below term controls (45.5% within 1 SD of the control group mean). The EPT infants performed worse than term controls on verbal, non-verbal, fine motor dexterity, visual motor and visual attention, noun fluency, early numbers concepts, functional communication, action verb word retrieval/immediate recall. Behaviour: Preterm children only differed significantly on standardized behavioural measures for higher refusal rates. Parents had more concerns with mental flexibility, general executive function, adaptive skills, and functional communication based on children’s chronological age but there was not a significant group difference. De Groote et al. (2007)  Belgium Impairment rates: In children born at 24 and 25 weeks gestation, severe impairment was found in 15% and 18% as a percentage of NICU admissions; however of those discharged alive, severe impairment was found in 36% of children born at 24 weeks and 29% of children born at 25 weeks gestation. In children born at 24 and 25 weeks gestation, no disability was found in 12% and 24% as a percentage of NICU admissions; however of those discharged alive, no disability was found in 27% of children born at 24 weeks and 39% of children born at 25 weeks gestation.  Cognitive Function: For infants born at 24 weeks gestation 50% scored in the normal range, 30% had a mild delay, and 20% had a moderate/severe delay. For infants born at 25 weeks gestation 44% scored in the normal range, 26% had a mild delay, and 30% had a moderate/severe delay.  Motor Function: For infants born at 24 weeks gestation, 40% scored in the normal range, 10% had a mild delay, and 50% had a mod/severe delay. For infants born at 25 weeks gestation 33% scored in the normal range, 19% had a mild delay, and 48% had a moderate/severe delay. Health: More than half of the children had somatic complaints; 25% URT issues, 23% LRT issues (18% of children used a puffer), 10% of children had a G-tube or gastrointestinal disorders and 6% had a shunt for hydrocephalus. Growth: For children born ≤25 weeks gestation average growth was -1.25 SDs below the mean; HC was > -0.8 SDs below the mean; length -0.76 SDs below the mean, despite catch up from previous visits. Catch up was most prominent for stature. 56  Author(s), Year and Country Major Findings Relevant to Outcomes of Infants Born ≤25 weeks Gestation Ishii et al. (2013)  Japan Survival/Mortality and Impairment: 22 and 23 weeks gestation increased the risks of death or NDI (80% and 63.7%) and 25 weeks gestation decreased the risks of death or NDI (34.1%) Impairment Rates: 26.6% of all infants £25 weeks gestation were unimpaired or had a minimal impairment (12% at 22 weeks and 33.1% at 25 weeks). Cognitive Function: Highest impairment rates in cognitive delays: 50% for infants born at 22 and 23 weeks and 33% in infants born at 24 and 25 weeks.  Motor Function: CP was diagnosed in 13.7% of infants born £25 weeks, with those born at 22 and 23 weeks having the highest rates (21.7% and 17.8% respectively). Sensory-Communication: Lowest impairment rates in hearing (1.7%) and vision (4.6%) Kerstjens et al. (2012)  The Netherlands Developmental Quotients: 1) Parents rated infants born ≤25 weeks gestation  as having more problems in all developmental domains including FM, GM, communication, problem-solving and personal and social functioning (37%) than parents rated term born controls (4.2%) p < 0.001; 2) Odds ratio for risk of an abnormal score on total problem scales increased by 1.14 for each week that gestational age was reduced (95% CI, 1.09-1.19; p < 0.001); 3) Covariates did not alter the pattern of exponential increase in developmental risk with decreasing gestational age; 4) This was the first study to show an exponential and not linear increase in developmental risk with decreasing gestational age.  Kytnarova et al. (2011)  Czech Republic Impairment Rates: 14.4% of children born ≤25 weeks gestation who were assessed had a major disability.  Growth: 1) Mean height, weight, BMI and HC lower in children born ≤25 weeks gestation compared to those children born at 26 and 27 weeks gestation. 2) Significantly less catch-up growth seen in children born ≤25 weeks gestation compared to those children born at 26 and 27 weeks gestation. 3) Growth failure (height < -2SD) in 25% at 2 years and 18% at 5 years compared to 17.6% at 2 years and 8.2% at 5 years in children born at 26 and 27 weeks gestation. 4) HC was significantly smaller in children born ≤25 weeks gestation. 5) The trajectory of head growth declined between 2 years and 5 years for all children ≤ 27 weeks. 6) Microcephaly was found in 18% of infants born ≤25 weeks gestation and in 11.7% of infants born at 26 and 27 weeks gestation. 7) No difference in indirect measures of total adiposity and fat distribution, waist and hip circumference and skin fold measurements between the 2 groups of premature children. 57  Author(s), Year and Country Major Findings Relevant to Outcomes of Infants Born ≤25 weeks Gestation Leversen et al. (2011)  Norway Impairment Rates: 1) 11% of infants born at ≤25 weeks gestation had either CP or a severe vision or hearing impairment; 2) Proportion of infants born ≤25 weeks gestation with a severe or moderate impairment was higher than the 26 to 27 week gestation group. There was no difference between the two groups with proportion of children with a mild disability; 3) 83% of children with a severe disability were born at ≤25 weeks gestation.  4) For children with a severe disability, CP class 4-5 accounted for 53% of them; 5) For children with a moderate disability, Full scale IQ 55-70 accounted for 53% of them; 6) For children with a mild disability, a motor disability (MABC score <5th percentile) accounted for 47% of them and vision problems (refractive errors and strabismus) accounted for 51% of them; 7) 25% of children had no identified disability. Cognitive Function: Higher cognition was related to maternal education, AGA, no ROP, and female gender Motor Function: 1) More boys than girls had M-ABC scores <5th percentile; 2) Children born at 23 to 25 weeks gestation had higher rate of scores < 5th%ile on M-ABC than infants born at 26 to 27 weeks gestation. Better motor abilities were related to maternal education, AGA, no ROP, and female gender; 3) Better scores on the M-ABC were associated with higher GA, prenatal steroids and negatively associated with SGA, Male gender and ROP. Sensory-Communication: A higher rate of hearing loss in the ≤25 weeks gestation group was not related to IVH or PVL on HUS 2. All children with a severe sensory-communication problem were ≤25 weeks gestation. Moore et al. (2012)  England Survival/Mortality and Impairment: Survival with severe disability: was not significantly different from 1995 cohort to 2006 cohort (18% (95% CI 14-24%) and 19% (95% CI 14-23%). Survival without a disability: improved significantly between the 1995 cohort and the 2006 cohort, 23% (95% CI 20% to 26%) to 34% (95% CI 31% to 37%) respectively. There was a significant improvement for infants born at 24 and 25 weeks gestation and there was no difference seen at 23 weeks gestation.  Impairment Rates: Severe impairment rate 13.4%; moderate impairment rate 11.8%. Combined severe and moderate impairment rate for infants born at 22 and 23 weeks gestation was 45%, 24 weeks gestation 30%, and 25 weeks gestation 25% (p < 0.0001). Overall, boys had poorer scores than girls; a higher rate of SNI (18% of boys vs. 9% of girls (OR 2.2, 95% CI 1.3-3.6); Moderate or severe impairment 32% of boys vs. 18% of girls (OR 2.1, 95% CI 1.4-3.0) and overall lower scores (mean difference -7 points, 95% CI -10 to -3). Motor function: Rate of cerebral palsy was 14%. 65% of infants with CP had mild GMFCS Level 1-2; 35% GMFCS Level 3-5. Rate and severity was related to lower gestational ages.  58  Author(s), Year and Country Major Findings Relevant to Outcomes of Infants Born ≤25 weeks Gestation Developmental quotients:  There was a non-significant trend toward lower mean developmental quotients for infants born at lower gestational ages ranging from 80 (SD 21) to 88 (SD 19) for infants born 22 and 23 weeks to 25 weeks gestation. The highest prevalence of impairment based on BSID-III scores were 16% on the cognitive index, 11% in the language index, 8% in the motor index.  Ochiai et al. (2014)  Japan Developmental Quotients: A normal or borderline developmental status reduction for infants ≤24 weeks gestation (54% to 41%) between the cohort born 2000-2004 and 2005-2009. The rate of moderate to severe developmental delay increased from 31% to 41% from 2000-2004 to 2005-2009. Zlatohlavkova et al. (2010)  Czech Republic Survival/ Mortality and Impairment: Survival without a major disability was positively associated with increased gestational age, increased birth weight, being born between 25 to 27 weeks gestation and being female. BCWH Neonatal Follow-Up Program 2014-2015 Biennial Report (2017)  Canada Impairment Rates:  For each consecutive year from 2006 to 2015, the abnormal and severe impairment rates for 3 and 4.5 year olds born £ 25 weeks gestation were 38%, 37%, 37%, 34%, 34%, 32%, 35%, 34%, 32%, and 31% respectively. For each consecutive year from 2006 to 2015, the mild impairment rates for the same population were 30%, 28%, 25%, 27%, 24%, 27%, 27%, 31%, 34% and 35%. For each consecutive year from 2006 to 2015, the rates of normal development, for the same population, were 31%, 33%, 36%, 28%, 41%, 41%, 38%, 35%, 34% and 34% respectively. Impairment rates were calculated using a 3 year moving average and the complexities of neonatal follow-up clinic structure for numbers and timing of assessments made estimating sample size impossible with any degree of accuracy.  Abbreviations: AGA: Average for gestational age; BCWH: British Columbia Women’s Hospital; BMI: Body mass index; BSID: Bayley scales of infant and toddler development; CP: Cerebral palsy; FM: Fine motor; G-tube: Gastrostomy tube; GCA: General conceptual ability; GM: Gross motor; GMFCS: Gross motor function classification system; HC: Head circumference; HUS: Head ultrasound; IVH: Intraventricular hemorrhage; LRT: Lower respiratory tract; M-ABC: Movement assessment battery for children; NFUC: neonatal follow-up clinic; NDI: neurodevelopmental impairment; PVL: Periventricular leukomalacia; ROP: Retinopathy of prematurity; SNI: severe neurodevelopmental impairment; URT: Upper respiratory tract 59  4.3.1 Outcomes Stratified by Week of Gestation Three studies reported data based on individual gestational ages. No overall conclusions could be reported based on these three studies, primarily due to differences in the definitions of impairment that were applied, as well as how impairment rate was calculated. The different tests that were administered resulted in inconsistencies in how outcome rates were calculated and reported. Ishii et al. (2013) reported impairment rates based on severe impairment and overall impairment, including mild-severe. Researchers calculated impairment rates based on those who survived to assessment age and cognitive delays were reported based on a developmental quotient. Zlatohlavkova et al. (2010) reported rates of major disabilities (moderate and severe categories) as well as impairment free survival, and compared these rates when calculated, based on NICU admissions, unlike Ishii et al. who calculated rates on infants who survived to assessment age. De Groote et al. (2007) reported severe disability, mild and moderate disability, and no disability, and calculated impairment rates based on the number of children who were discharged alive from the NICU. Comparing the results of studies that used different denominators to calculate survival rates and impairment rates was difficult. In addition, tests that amalgamated motor, language and cognitive domains to create a developmental quotient made interpreting outcomes challenging. De Groote et al. (2007) and Ishii et al. (2013) reported cognitive developmental quotient tests scores for children born at 24 weeks gestation at ages 3 to 3.5 years. De Groote et al. found a severe delay in 10.6%, a moderate delay in 0%, a mild delay in 30% and normal results in 31.2% of children; Ishii et al found a severe delay in 20%, a moderate delay in 26%, a mild delay in 32.2% and normal results in 50% of children. For infants born at 25 weeks gestational age, De Groote et al. found a severe delay in 11.7%, a moderate delay in 11%, a mild delay in 26% and 60  normal results in 39% of children; Ishii et al. found a severe delay in 19%, a moderate delay in 21.4%, a mild delay in 27.9% and normal results in 44% of children. 4.3.2 Impairment Rates Five studies, in addition to the outcomes conveyed in Neonatal Follow-Up Program 2014-2015 Biennial Report (2017), reported rates of impairment. The various impairment definitions are outlined in Table 5. De Groote et al. (2007) demonstrated how different denominators affected the calculated rate of impairment and showed that impairment rates based on the number of NICU admissions appear significantly lower than impairment rates based on children who survived to discharge (15% versus 36% for infants born at 24 weeks gestational age, and 18% versus 29% for infants born at 25 weeks gestational age). Four other studies appear to have used the number of children assessed in the data sample as the denominator for impairment rates; therefore, these four studies, as well as the outcome data reported in the Neonatal Follow-Up Program 2014-2015 Biennial Report (2017) are integrated here.61  Table 5. Impairment Definition by Publication Study Motor Impairment Hearing Impairment Vision Impairment (VI) Development/Cognition Impairment Other Baron et al. (2011) United States    Impairment: Developmental scores <85 (1 SD below mean)  De Groote et al. (2007)  Belgium Severe: Requires assistance to perform ADLS, unable to walk without assistance, cannot sit independently Severe: Uncorrected hearing loss with amplification Severe: blindness or light perception only Severe/Moderate: DQ score <70 Mild: DQ 70-85 Normal: DQ > 85 (within 1 SD of mean)  Ishii et al. (2013)  Japan Severe: Profound CP GMFCS Level 4-5 Severe: Requires amplification Severe: No functional vision Severe : DQ <70 (2 SDs below the norm)  Kerstjens et al. (2012)  The Netherlands    Developmental delay: DQ score 2 SDs below mean  Kytnarova et al. (2011)  Czech Republic     Growth <2 SDs below mean 62  Study Motor Impairment Hearing Impairment Vision Impairment (VI) Development/Cognition Impairment Other Leversen et al. (2011)  Norway Severe: CP GMFCS Level  4-5 Moderate: CP GMFCS Level 2-3 Mild: CP GMFCS Level 1 Severe: Deaf Moderate: bilateral amplification Mild: mild hearing impairment no aids Severe: Blind Moderate: severe VI Mild: refractive errors, strabismus Severe: IQ <50 (<3 SD below mean) Moderate: IQ 55-70 Mild: IQ 70-85 Normal: IQ >85 (within 1 SD of mean)  Moore et al. (2012)  England Severe: CP GMFCS Level 3-5 Moderate: CP GMFCS Level 2 Mild: CP GMFCS Level 1 Severe: Profound SNHL not helped by aids Moderate: bilateral amplification Mild: mild hearing impairment no aids Severe: Blindness Moderate: functional VI Mild: refractive errors, strabismus Severe: IQ <55 (<3 SD below mean) Moderate: IQ 55-70 Mild: IQ 70-85 Normal: IQ > 85 (within 1 SD of mean)  Ochiai et al. (2014)  Japan    Moderate or Severe: DQ score <50 Mild: score 50-70 Normal: >70  Zlatohlavkova et al. (2010)  Czech Republic Major Disability: CP affecting independent locomotion GMFCS Level 2-5 Major Disability: Deafness not correctable with amplification or amplification use Major Disability: Blindness or light perception only Major Disability: IQ <70  63  Study Motor Impairment Hearing Impairment Vision Impairment (VI) Development/Cognition Impairment Other Neonatal Follow-Up Program 2014-2015 Biennial Report (2017) Canada Severe: non-ambulatory CP, Abnormal: ambulant CP Mild: abnormal neurological signs with minimal functional impairment Normal: none of the above Severe: severe to profound hearing loss <75dB Abnormal: sensory neural hearing loss 25-75dB Mild: conductive hearing loss, unilateral loss or mild loss not causing significant functional impairment Normal: none of the above Severe: Blindness <20/200 Abnormal: visual impairment >20/200 but <20/80 in better eye with optimal refractive correction Mild: refractive error, strabismus or visual problem corrected with glasses Normal: none of the above Severe: IQ>-3SDs Abnormal: IQ<-3SDs&>-2SDs Mild: IQ<-2SDs&>-1SDs Normal: none of the above  Abbreviations: ADLS: activities of daily living; CP: cerebral palsy; DQ: Developmental quotient; GMFCS: Gross motor functional classification system; SNHL: sensorineural hearing loss. 64  The proportion of children born £25 weeks gestational age, who between the ages of 3 years and 5 years were free of disability or mild impairment, was at least one quarter. Ishii et al. (2013) found no or minimal impairment in 26.6% of their 3-year-old sample, Leversen et al. (2011) found 25% of their 5-year-old sample had no identified disability and Moore et al. (2012) found no disability in 34% of their sample. In the NFUC at BC Women’s Hospital the percentage of children who were assessed between 2011 and 2015 at 3 years old or 4.5 years old and found to be free of impairment ranged from 34% to 41% using a 3 year moving averages (Neonatal Follow-Up Program 2014-2015 Biennial Report, 2017). A 3 year moving average includes the average for the present year, as well as the immediately preceding and following year, which evens out variations due to small numbers and reduces the effect of young age assessments (Neonatal Follow-Up Program 2014-2015 Biennial Report, 2017). Overall, less impairment was identified in children born at increasing gestational age, and conversely, higher rates of moderate and severe impairment were identified in children born at lower gestational ages (Ishii et al., 2013; Leversen et al., 2011; Moore et al., 2012). Moore et al. (2012) found that the rates of severe or moderate impairment for children born at 22 and 23 weeks gestational age was 45%, for children born at 24 weeks gestational age was 30%, and for children born at 25 weeks was 25%. In comparison, the combined rate of abnormal development and severe impairment for infants assessed at BC Women’s Hospital born £25 weeks gestational age between 2011 and 2015 at 3 years or 4.5 years old ranged from 31% to 35% (Neonatal Follow-Up Program 2014-2015 Biennial Report, 2017). Leversen et al. (2011) found 83% of children demonstrating severe disability who were born £27 weeks gestational age were those children who were born at £25 weeks gestational age. 65  4.3.3 Developmental Quotients Six studies reported on developmental quotient scores for children born at £25 weeks gestational age (Baron et al., 2011; De Groote et al., 2007; Ishii et al., 2013; Kerstjens et al., 2012; Moore et al., 2012; Ochiai et al., 2014). Compared to term born infants, children between 3 and 4 years of age had significantly more difficulty in all areas of development, including verbal expression, non-verbal expression, fine motor dexterity, visual motor and visual attention, noun fluency, early numbers concepts, functional communication, action verb word retrieval, and immediate recall (Baron et al., 2011), as well as gross motor functioning, fine motor functioning, communication, problem solving, and personal and social functioning (Kerstjens et al., 2012). Baron et al. (2011) found that, although 81.1% of preterm infants born at £25 weeks gestational age had a general developmental quotient within normal limits (>85), as preschool children, they scored significantly below term controls with only 45.5% of EPT born children scoring within 1 SD of the control group mean. Of children born at £24 weeks gestational age, between 41% and 54% had normal or borderline developmental status (Leversen et al., 2011). This trend toward differences between gestational age groupings is reflected in the results of Kerstjens et al. (2012); they showed an exponential developmental risk with decreasing gestational age and Moore et al. (2012) reported a non-significant trend toward lower mean developmental quotients for infants born at lower gestational ages. Moore and colleagues (2012) found the highest prevalence of delay based on an overall test of development was in the cognitive index (16%), then in the language index (11%) and lastly in the motor index (8%). This finding is corroborated by Ishii and colleagues (2013) and Ochiai (2014) who found the highest rates of delay were also in the cognitive domains (50% for 66  children born at 22 and 23 weeks gestational age, 33% in children born at 24 and 25 weeks gestational age; 20% in children born at 24 weeks gestational age and 29% in children born at 25 weeks gestational age, respectively). 4.3.4 Motor Function Four studies in the data set evaluated and reported on motor function for children born at ≤25 weeks gestational age (De Groote et al., 2007; Ishii et al., 2013; Leversen et al., 2011; Moore et al., 2012). Two studies reported similar rates of CP at 3 years of age, 13.7% and 14% respectively (Ishii et al., 2013; Moore et al., 2012). In infants free of CP, minor motor dysfunction was prominent for children born at 25 weeks gestational age and <24 weeks gestational age. Both higher rates and severity of CP and motor dysfunction were found at lower gestational ages using a neurological exam. Leversen et al. (2011) compared motor outcomes of boys and girls born at 23, 24 and 25 weeks gestational age and found at least twice as many boys scored <5th percentile on the MABC compared with girls born at the same gestational age. 4.3.5 Growth Two studies evaluated the growth of children born at £25 weeks gestational age (De Groote et al., 2007; Kytnarova et al., 2011). Overall, EPT infants were found to exhibit catch up growth in stature. De Groote et al. (2007) evaluated children at 6 months and 3 years of age, and Kytnarova et al. (2011) evaluated children at 2 years and 5 years of age. However, children born at ≤25 weeks gestational age remained below the standard means, compared to premature infants born at 26 and 27 weeks gestational age and term controls. 4.3.6 Behaviour One study reported results related to parent’s perception of EPT preschoolers’ adaptive and problem behaviours; however, there was not a significant between-group difference in 67  parental rating of externalizing problems, internalizing problems or behavioural symptoms (Baron et al., 2011). 4.3.7 Health Another study reported health-related outcomes, citing more than 50% of EPT children as having some somatic complaints: respiratory tract problems and feeding problems were the two major problems experienced at preschool age (De Groote et al., 2007). This cohort was not compared to term controls. 4.3.8 Sensory-Communication Two studies addressed hearing and vision. Ishii et al. (2013) identified the lowest rates of impairment as being found in the domains of hearing and vision. Leversen et al. (2011) found that all children with severe sensory-communication problems were born at <25 weeks gestational age and that this group of infants had a higher rate of hearing loss in general. 4.4 Findings from Thematic Analysis The areas of focus were analyzed and coded, and deductions were made that illuminated four themes related to the outcome results presented in the studies. The common themes that arose from the findings were: 1) correlates of outcomes; 2) comorbidities; 3) message framing; and 4) factors that affect reporting outcomes and interpreting data. 4.4.1 Correlates of Outcomes All studies in the data set described factors related to preschool outcomes in their results. Correlates of outcomes can be categorized as maternal factors, perinatal factors, infant factors (for example gestational age, birth weight, infants’ s sex), neonatal morbidities and treatments for prematurity. The Neonatal Follow-Up Program 2014-2015 Biennial Report (2017) did not report factors related to outcomes. Together, three studies described five factors related to 68  reported survival rates with or without impairment: 1) different denominators used to calculate survival rates (Ishii et al., 2013); 2) perinatal variables (specifically maternal tocolytics and antenatal steroid therapy) (Ochiai et al., 2014); 3) gestational age; 4) birth weight; and 5) infants’ sex (Zlatohlavkova et al., 2010). All researchers looked at gestational age in relation to outcomes (n=9), and generally studies associated lower gestational ages with worse outcomes. The outcomes that were found to be related to gestational age were survival (Ishii et al., 2013; Zlatohlavkova et al., 2010), rates of severe and moderate neurodevelopmental disability, which included CP (Ishii et al., 2013; Moore et al., 2012), cognitive impairments (Baron et al., 2011; De Groote et al., 2007; Ishii et al., 2013; Ochiai et al., 2014), overall developmental quotients (Kerstjens et al., 2012; Moore et al., 2012), motor dysfunction (Leversen et al., 2011; Moore et al., 2012), language and behaviour (Baron et al., 2011), catch-up growth and head circumference (Kytnarova et al., 2011), and moderate and severe hearing impairment (Leversen et al., 2011). Vision was not consistently significantly associated with gestational age (Ishii et al., 2013; Leversen et al., 2011; Moore et al., 2012). Ishii et al. (2013) found vision impairment was related to being born £23 weeks gestational age compared to being born at 24 and 25 weeks gestational age. Moore et al. (2012) found a borderline association between vision impairment and gestational age (p=.05). When excluding children with CP, blindness and deafness, Leversen et al. (2011) found no statistically significant association between less severe vision impairments (defined as strabismus or refractive errors) and gestational age. Neonatal morbidities were related to lower gestational age in two studies and linked to poorer developmental outcomes. In infants born between 22 and 25 weeks gestational age, RDS, seizures, grade 3 to grade 4 IVH, and sepsis occurred at lower rates in the more mature infants 69  (Ishii et al., 2013). In a separate study, researchers found rates of BPD, ROP, and the necessity for postnatal dexamethasone treatment were significantly higher for infants born £25 weeks, than for infants born between 26 to 33 weeks (Zlatohlavkova et al., 2010). Leversen et al. (2014) highlighted the potential implications of morbidities on outcomes and found ROP was related to vision outcomes at ages 5 to 6 years. Infants’ sex was related to outcomes by three research groups; these included survival and survival without major disability (Zlatohlavkova et al., 2010), overall outcomes, (Kerstjens et al., 2012; Zlatohlavkova et al., 2010), and motor dysfunction (Leversen et al., 2011). In all of these studies male sex was associated with poorer outcomes. In one study, infants’ sex was not implicated in vision problems (Leversen et al., 2011). In relation to multiple births, one study reported that plurality was not significantly associated with survival or survival free of major disability (Zlatohlavkova et al., 2010), and another study presented a borderline association with developmental outcomes based on parent-reported ASQ-total problems (Kerstjens et al., 2012). Two research groups found birth weight to be related to outcomes. One study found increased birth weight in EPT children increased their rates of survival and survival without major disability (Zlatohlavkova et al., 2010) Another research group found a significant association between children born small for gestational age and parental report of more problems in all developmental domains on the ASQ compared to infants born at average weight for gestational age (p < 0.001) (Kerstjens et al., 2012). Three studies controlled for SES factors and ethnicity (Kerstjens et al., 2012; Moore et al., 2012; Zlatohlavkova et al., 2010). Only Kerstjens et al. (2012) documented SES, including mother’s country of birth and parent education, as being statistically correlated with parental 70  reports of overall developmental problems (Kerstjens et al., 2012). Lower maternal education was related to abnormal ASQ scores (>2 SD below the mean score for term -born children) and mothers’ countries of birth outside the Netherlands were negatively associated with scores in the normal range. 4.4.2 Comorbidities Three studies highlighted the multiple areas of disability experienced by many EPT-born children in each of their cohorts (Baron et al., 2011; De Groote et al., 2007; Moore et al., 2012). Moore et al. (2012) documented a 16% rate of CP in their cohort of 584 children born at £25 weeks gestational age. Of these children, 12% also had a severe sensory impairment (5% vision impairment and 7% hearing impairment). All of the children had some degree of cognitive impairment (57% severe, 46% moderate, and 7% mild). Similarly, De Groote et al. (2007) reported that, of the 25% of EPT children diagnosed with CP, 47% had a sensory-communicative impairment and 42% had impairment in their overall development.  In keeping with the previously reported finding, the majority (79%, 95% CI: 61-97%) of children with CP had delayed mental development (32% severe, 12% moderate, and 16% mild). Using a Venn diagram, De Groote et al. demonstrated that 17% of children had a disability in four domains (neuromotor functioning, sensory-communication function, mental (cognitive and language) development, and motor development), 16% had a disability in 3 domains (neuromotor functioning, mental development, and motor development), and 14% had impairment in both motor and mental development. Overlapping moderate and severe impairments can create highly visible functional limitations; however, subtler overlapping areas of disability can amount to significant, but less visible problems for older children. In one study, parents reported their EPT children as having 71  more problems on subscales of the BRIEF-P and BASC-2 parental questionnaires, related to functional communication and adaptive skills (p = .048), and executive function and attention (Baron et al., 2011), with borderline statistical significance. One limitation of parent-report tools is that the results are subjective; researchers cannot control for parents’ tolerance of children’s behaviours, which may contribute to reporting bias. 4.4.3 Message Framing In the data set of nine studies, four studies framed their primary and secondary aims with positive or neutral wording (De Groote et al., 2007; Kytnarova et al., 2011; Moore et al., 2012; Ochiai et al., 2014). Alternatively, three studies used neutral or negative terminology to describe their aims (Baron et al., 2011; Ishii et al., 2013; Kerstjens et al., 2012). Two studies framed their goals (Leversen et al., 2011; Zlatohlavkova et al., 2010) with a balanced perspective using both positive and negative terms. When it came to framing their conclusions, four researcher groups used an exclusively negative perspective by choosing a range of terminology from delay (Baron et al., 2011; Kerstjens et al., 2012) and immaturities (Baron et al., 2011) to death and neurodevelopmental impairment (De Groote et al., 2007; Ishii et al., 2013). The remaining five studies provided more balanced perspectives when describing their overall conclusions, for example, they contrasted impairment and poor outcomes with impairment free survival or survival without major disability (Kytnarova et al., 2011; Leversen et al., 2011; Moore et al., 2012; Ochiai et al., 2014; Zlatohlavkova et al., 2010). Table 6 outlines the terms used in the studies that are categorized as arising from an optimistic, neutral, or pessimistic perspective.72  Table 6. Variations in Outcome Terminology Author, Date & Country Stated Aims Conclusion  Favourable Neutral Adverse Favourable Adverse Baron et al. (2011) United States  Performance Impairment  Delays and immaturities De Groote et al. (2007)  Belgium Health Neurodevelopmental outcome   Deficient development and impairment/poor outcomes Ishii et al. (2013)  Japan  Neurodevelopmental outcomes Mortality  Death or NDI Kerstjens et al. (2012)  The Netherlands   Delay  Delay Kytnarova et al. (2011)  Czech Republic  Growth  Catch up Microcephaly Leversen et al. (2011)  Norway  Cognitive and motor function Disability Impairment free Poor outcomes Moore et al. (2012) England  Outcomes  Survival and survival without disability Impairment Ochiai et al. (2014) Japan Survival Neurodevelopmental outcome  Survival Impairments Zlatohlavkova et al. (2010) Czech Republic Survival/outcome free of major disability  Mortality Survival and survival without major disability Impairment Neonatal Follow-Up Program 2014-2015 Biennial Report (2017) Canada Normal  Impairment Abnormal  None 73  4.4.4 Factors that Affect Reporting Outcomes and Interpreting Data Several studies in this data set identified areas that required careful consideration when making study comparisons or had specific aims related to factors that would affect their interpretation and outcome results. In this data set, researchers chose either a term-born control group, or compared different cohorts of preterm and EPT infants, or used normative data to interpret results. One study limitation identified by Moore et al. (2012) was a 6 month age difference in their two study cohorts. While they used age-normalized tests to fit with their study aim, the developmental progress could not be compared to current term controls within the 2 cohorts, and as Baron et al. (2011) found, the developmental deficits only became apparent when EPT born children were compared with regional term controls. Another way this data set demonstrated how study sets can confound the ability to compare outcomes is through the study sample either being categorized by gestational age or by birth weight (Kytnarova et al., 2011). Within this data set, no two studies that reported on impairment rates used exactly the same definitions. Table 5 outlined the definition of impairment used in each publication. None of the studies included a definition of impairment that included any behavioural diagnoses, autism, or ADHD, which is likely a reflection of the preschool-age population which is often considered too young for these diagnoses (Johnson et al., 2010). De Groote et al. (2007) described how they chose the same impairment definitions as previous studies to facilitate comparison. Conversely, within another study, two different cohorts had different impairment definitions applied to them, which complicated comparisons with more recent studies (Moore et al., 2012). The study by Moore et al. (2012) was also complicated by changes in the editions of the developmental test between the two cohorts. This was also considered in the data presented in the Neonatal Follow-Up Program 2014-2015 Biennial Report (2017). There is well-documented difficulty when 74  comparing different tool editions, especially when data is reported for a wide time span, or when comparing outcomes over time. Some studies in this data set used the BSID-II and some studies used the BSID-III.  Five studies reported on the cognitive function of EPT preschoolers (Baron et al., 2011; De Groote et al., 2007; Ishii et al., 2013; Kerstjens et al., 2012; Moore et al., 2012). While two studies (Kerstjens et al., 2012; Moore et al., 2012) reported the results in the context of developmental quotients, three studies reported on cognitive function. (Baron et al., 2011; De Groote et al., 2007; Ishii et al., 2013). Reporting on cognitive function may be misleading if results are compared to other studies that used cognitive IQ tests at school age, in comparison to developmental tests for use in infants, toddlers, and preschoolers. One limitation identified by Ishii et al. was the use of the KSPD tool, an overall developmental test not widely used for cognitive evaluation. Furthermore, the use of a developmental quotient, which combines several developmental domains, obscured nuanced analysis of the findings. Baron et al. (2011) sought to establish if there was a meaningful difference between corrected age and chronological age. These researchers found that such differences in scoring the development of children affected study results and, therefore, needed to be incorporated when comparing results of different studies (Baron et al., 2011). For the purpose of this integrative review, studies that described the outcomes of preschoolers born £25 weeks gestational age were included. This was the most significant limiting factor for article selection and, within the data set, each study did not describe the outcomes of this population in equivalent ways. Three studies stratified outcomes based on individual weeks of gestation, from 22 to 25 weeks (De Groote et al., 2007; Ishii et al., 2013; Zlatohlavkova et al., 2010). The remainder of the studies, including the Neonatal Follow-Up 75  Program 2014-2015 Biennial Report (2017), presented the results with combined gestational ages, with any grouping of 22 to 24 weeks gestational age to 23 to 25 weeks gestational age. Ishii et al. (2013) found that rates of CP were higher in the sub-group of children born at 22 and 23 weeks gestational age, compared to the whole cohort of children born at £25 weeks gestational age; De Groote et al. (2007) found more children born at 24 weeks gestation had normal scores on both subscales of the BSID-II than children born at 25 weeks gestational age. These findings highlighted the strength of reporting results for each individual gestational age and the limitation of reporting results for a range of different gestational ages. Survival definitions and denominators, outcome denominators, impairment definitions, comparison groups, how tests are scored using corrected age versus chronological age, and what tests are used can affect how study results are interpreted, limit how studies can be compared, and limit the utility of the study results. This data set illuminated some themes that affect and are associated with outcomes, including overlapping adverse outcome results, the ways that the results are presented, and the terminology used to present them. These factors all have profound effects on how the data, study results, and overall literature can be interpreted and used by nurses and families. These four themes have significant implications for nurses at the bedside and will be further discussed.  4.5 Summary This chapter highlighted similarities and differences in the characteristics of the 9 studies included in this data set. This section integrated the outcome findings of each study with the results from the Neonatal Follow-Up Program 2014-2015 Biennial Report (2017). The results were categorized under gestational age, impairment rates, overall development, motor function, growth, behaviour, health and sensory-communication. The integration was limited by a small 76  overall sample size and heterogeneity of children in the sample set. Finally, this chapter outlined four themes that emerged from thematic analysis including: correlates of outcomes, comorbidities, message framing, and factors that affect reporting outcomes and interpreting data. The next chapter discusses the findings and presents the implications of the findings.   77  Chapter 5: Discussion and Implications 5.1 Introduction This chapter provides a discussion of the chosen methodology, the results presented in the previous section, and the four themes that emerged from thematic analysis. The chapter begins by comparing the findings of this integrative review to other pertinent literature on the neurodevelopmental outcomes of EPT infants and discusses the four themes in the context of current literature. The next section highlights strengths and limitations of the review. Finally, the chapter presents the implications of this project and its findings for nursing practice with respect to gaps in the literature, interventions associated with improved outcomes, nurses’ communication with parents, and nurses’ moral distress. The goal of this review was to provide a comprehensive integration of the relevant research literature related to the research question. An implication of this review is its’ contribution to nurses’ abilities to address parents’ questions and concerns about future developmental outcomes of their premature infants. The integrative review methodology provided an opportunity for wide inclusion criteria of the available evidence. I have identified nine outcome domains from the relevant literature, including the Neonatal Follow-Up Program 2014-2015 Biennial Report (2017). Based on those findings I identified four themes that emerged from my integration of the results. These four themes have direct implications for nurses and the parents of the EPT infants, with whom they communicate.  5.2 Study Methods The integrative review evaluated the literature describing outcomes of EPT born infants (≤25 weeks gestation) at preschool age. Preschoolers’ were defined as children aged three to five years. A preliminary search of literature that described long-term outcomes revealed that the 78  majority of studies focused on outcomes of EPT children between the ages of 18 months and 2 years. However, some researchers have questioned the appropriateness of the timing of assessments of children’s cognitive processes and behaviour, due to their lack of the predictive value for future outcomes (Synnes, 2015). Colombo and Carlson (2012) described 18 months as a significant time of reorganization in early development. It was suggested that children’s development in this period may be too unstable to draw major conclusions in the context of specific study outcomes, such as the effectiveness of interventions on outcomes. Given the concerns raised in the literature this review focused on an older cohort. Through an integrative review of the literature, I identified studies that highlighted the outcomes of EPT children, in relation to survival, with or without impairment, rates of impairment, overall development, cognitive and motor function, behaviour, growth, health, and sensory-communication. A broad range of outcomes was covered in the database search, as evidenced by the extensive key word search. I hoped to develop a well-rounded perspective on outcomes that might appeal to parents’ interests beyond moderate and severe impairments. Unfortunately, my results demonstrated that those areas of potential interest represented a limited focus for researchers. In general, there was a dearth of eligible studies for the age group of interest, which resulted in a small sample set. That small sample limits our full understanding of preschool outcomes. Nine international studies originating from cohorts of infants cared for in developed countries made up this data set. Those study results were anticipated to be representative of the outcomes of infants in a Canadian context. Unfortunately, the data set did not reveal any Canadian studies with which to compare the results of BC Women’s Hospital NFUC (Neonatal Follow-Up Program 2014-2015 Biennial Report, 2017). The MiCare Study (not included in my 79  data set), a national cohort study of infants born <29 weeks gestational age in 28 centres across Canada, revealed the disparities in outcomes between different study centres, and emphasized the importance of segregating unit-specific outcome data (Synnes et al., 2016). Therefore, the integrity of current NFUC data that is linked to current NICU practices, made including the most recent data from BC Women’s Hospital NFUC an important element of the review (Neonatal Follow-Up Program 2014-2015 Biennial Report, 2017). This was particularly important because of the needs of the NICU nurses at BC Women’s Hospital. Four studies analyzed single-unit data (Baron et al., 2011; Kytnarova et al., 2011; Ochiai et al., 2014; Zlatohlavkova et al., 2010) and researchers from the 5 multi-centre studies did not address disparities between unit outcomes. 5.3 Study Results There was significant heterogeneity in the reporting of individual study results, specifically for impairment rates. Researchers used varied definitions of impairment, which made cross-study comparison difficult. Investigators also reported results based on different clusters of gestational ages, different clusters of severity of impairment, and different denominators used for the proportion of impairments reported. Leversen et al. (2011) and Moore et al. (2012) used different comparison groups including gestational age and gender. An overall trend of severe impairment rates for EPT born infants at preschool age was found in three studies that cited severe impairment rates at 11% (Leversen et al., 2011), 13.4% (Moore et al., 2012), and 14.4% (Kytnaorva et al., 2011). Since the Neonatal Follow-Up Program 2014-2015 Biennial Report (2017) presents a combination of abnormal development and severe impairment rates, there was no data to compare the exclusive rates of severe impairment to. In a Canadian cohort study of infants born ≤25 weeks and assessed at 18 to 21 months corrected age, the proportion of children with significant neurodevelopmental impairment (moderate and severe) was cited as 80  25.2% (Shafey, 2015). In a meta-analysis of neurodevelopmental outcomes at 4 to 8 years of age, proportions of children born at ≤25 weeks gestational age with moderate and severe impairment were 52% at 22 weeks and 15% at 25 weeks (Moore, Lemyre, Barrowman, & Doboval, 2013). In an update of this meta-analysis, Cantarutti (2014) reported moderate to severe impairment of children born ≤25 weeks gestational age, to be 30% (39.9% for infants born at 22 to 23 weeks gestational age and 18.9% for infants born at 25 weeks gestational age) at 4 to 8 years. These rates from meta-analyses appear higher, due to combined categories of both moderate and severe impairment. The combined rates of abnormal development and severe impairment for infants born £25 weeks gestational age at BC Women’s Hospital at 3 years old or 4.5 years old ranged from 31% to 35%, in keeping with the recently updated findings from Cantarutti (Neonatal Follow-Up Program 2014-2015 Biennial Report, 2017). In this review, similar rates of CP were found in the two studies that reported CP rates in 3-year-olds, born ≤25 weeks gestation, which were 13.7% and 14% respectively (Ishii et al., 2013; Moore, et al., 2012). These findings fit with a comprehensive meta-analysis that found 14.6% of children born at 22 to 27 weeks gestational age were diagnosed with CP, with a significant decrease after 27 weeks (Himpens, Van den Broeck, Oostra, Calders & Vanhaesebrouck, 2008). In this data set, minor motor dysfunction was tested and defined by two studies as scores <5th percentile on the M-ABC or varying cut off scores on the BSID-II (De Groote et al., 2007; Leversen et al., 2011). Nonetheless, I was challenged when integrating findings about minor motor dysfunction as a result of how researchers reported their results. De Groote et al. (2007) described the percentages of infants that met the criteria for different degrees of motor impairments, excluding CP, and Leversen et al. (2011) reported the differences in motor 81  functioning between varying genders and gestational ages. Often, these motor findings on the M-ABC test, for children without CP, would meet the partial criteria for a diagnosis of DCD; however, none of the studies addressed DCD in the outcomes. In the context of the preschool population, there are conflicting findings regarding the predictability of DCD (Leversen et al., 2011; Spittle & Orton 2014), and parental perceptions in preschoolers were found to be poorly predictive of DCD at school age (Roberts et al., 2011). However, in an Australian cohort of EPT infants of ≤28 weeks, Goyen and Lui (2008) found that a motor score of less than the 27th percentile using the Peabody Fine Motor Scales at 3 years old was predictive of a diagnosis of DCD at later ages. Two studies in this integrative review highlighted that preschoolers born at £25 weeks gestational age had higher rates of moderate and severe motor impairments compared to infants born at £27 weeks gestational age (De Groote et al., 2007; Leversen et al., 2011). De Groote et al. found that, even when preschoolers with CP were excluded, only 38% of preschoolers had normal motor development. When assessing the results of children’s developmental status, only a handful of studies specified whether corrected age or chronological age was used. Leversen et al. (2011) highlighted that correcting for prematurity would result in a shift toward better outcomes; this is a specifically relevant consideration for EPT children. In a child at the edge of viability, this may adjust their age by 4 months. One study in the sample set considered age correction. By reporting both corrected and chronological age, Baron et al. (2011) tried to differentiate early delay using developmental quotients compared to true impairments. This study found that while EPT children approached the normative means when adjusting for corrected age, the term group was still performing at more than 0.70 SD above the preterm group means; the authors highlighted 82  the functional difference between preterm children and their classroom counterparts (Baron et al., 2012). In the most recent review conducted on age correction, D’Agostino (2010) identified studies that demonstrated a significant difference between corrected and chronological aged scores cognitive scores at 4 years corrected and chronological age and height and weight at 3 years corrected and chronological corrected age (Stjernqvist & Svenningsen, 1995; Wang & Sauve, 1998). There is limited current research on recommendations regarding when to stop adjusting for corrected age; there is also no consensus among researchers and clinicians. In the context of this paper, using corrected age may overestimate normal outcomes in EPT children and prevent some children from obtaining access to services that they may benefit from. Conversely, chronological age may overstate delays in EPT children. In their review of the literature concerning age adjustment in developmental assessment, Wilson and Cradock (2004) suggested the importance of balancing available services to those who need it, without referring all EPT children for intervention, which could over-burdening the referral process and creating undue parental anxiety. When researchers and clinicians are aware of these factors they can make decisions regarding the use of corrected versus chronological age in the context of their work. Calculating and reporting both corrected and chronological age scores can help flag children requiring intervention within the greater context of children’s family and social environment. This review demonstrated that EPT children who scored within the normal limits of development (based on normative values assigned to testing tools), remained disadvantaged when compared to term controls that consistently scored higher in cognitive, language, and motor domains. Term infants have been shown to have higher mean scores than the usual reference means of cognitive tests, which may underestimate the true disadvantage experienced 83  by EPT children (Leversen et al., 2011; Woodward et al., 2009). Selection bias should be considered in the term born control groups. Children in the term control groups may be socioeconomically advantaged which could account for some of the discrepancies. That problem can be managed somewhat by controlling for SES. When looking at specific developmental domains that may underlie global school problems Kerstjens et al. (2012) speculated about the high prevalence and low severity of disabilities and educational problems found at school age. As a result, these studies suggested that children require further prevention and earlier treatment at preschool age and potentially suggest that EPT children may be on a different developmental trajectory to their term-born peers. Other environmental factors may also contribute to these findings, such as sleep issues, impoverished living situations, or poor nutrition but those considerations are beyond the scope of this project. Some of the researchers developed conclusions regarding cognitive impairment rates when referring to outcomes of children who were assessed using overall developmental tools; these included the parent report ASQ, the BSID-II and III, and the KSPD (Baron et al., 2011; De Groote et al., 2007; Ishii et al., 2013). These global tests are intended to expose developmental delay and are generally not found to be predictive of cognition at school age (Canals, Hernandez-Martinez, Esparo & Fernandez-Ballart, 2011). Colombo and Carlson (2012) commented on a similar concern in a commentary about a study that aimed to determine the effect of a nutritional intervention on infant cognition. Qawasmi et al. (2012) used the BSID-III tool up to 18 months; Colombo and Carlson (2012) raised concerns that a test used to identify developmental delay was inappropriate to make conclusions about the construct of infant cognition, especially in light of the BSID-III’s lack of predictability for term infants’ IQ at 6 years of age (Canals et al., 2011). 84  I considered these problems when reporting the individual study results and when integrating the results for this review. There was limited ability to integrate the growth findings in children born at £25 weeks gestational age. This problem resulted from two studies that assessed children at different ages, infancy and 3 years old compared with assessments at 2 years and 5 years. In addition, the studies compared different groups of children: EPT infants with term controls versus EPT infants with older EPT infants between 26 to 27 weeks gestational age. De Groote et al. (2007) reported average growth in relation to the standard deviation from the mean versus percentile of growth failure for both stature and head circumference. These two studies may lead us to believe that EPT children, born at ≤25 weeks gestational age, have less catch-up growth compared to older gestational age preterm infants, which may be linked to brain growth and the higher rates of developmental delay seen in EPT children compared to older gestational age preterm children and term controls; one cohort study had average growth that was 1.25 SD below the mean, with catch-up most notable in height compared to term controls. Only one study in each category reported on behaviour (Baron et al., 2011), sensory-communication issues related to hearing and vision (Leversen et al., 2011), and overall health (De Groote et al., 2007) for children born at ≤25 weeks gestational age. It was not possible to use these findings in the integrative analysis because the outcome findings could not be compared and contrasted with those of other studies. 5.4 Thematic Analysis A thematic analysis revealed four themes related to the literature available on the outcomes of preschool-aged children born EPT. These included: correlates of outcomes, 85  outcome comorbidities, message framing, and factors related to reporting and interpreting outcome data. 5.4.1 Correlates of Outcomes Outcomes of EPT children were associated with many factors in this data set, including antenatal steroid administration, GA, neonatal morbidities, sex, BW, multiple births, parental SES, and maternal education. Other studies that included different gestational age groups have linked both short and long-term outcomes to antenatal corticosteroid administration, GA, neonatal morbidities (specifically NEC, BPD, neonatal infections, and major brain lesions such as PVL and IVH), sex, BW, and multiple births, (Bassler et al., 2009; Schlapbach et al., 2012; Schmidt et al., 2003). 5.4.1.1 Antenatal Steroids For infants at the edge of viability, antenatal steroids were associated with a significant improvement in infant survival with or without impairment (Ishii et al., 2007). This finding is supported by a recent Canadian national cohort study analysis of infants born ≤28 weeks gestational age; researchers found that antenatal corticosteroids improved infants’ survival and most importantly in the context of this analysis, reduced severe neurological injury (Rolnitsky, Lee, Piedbouf, Harrison, & Shah, 2015). In an assessment of two-year-olds from a Swiss national cohort of EPT infants born at <28 weeks gestation between 2000 and 2008 researchers found that failing to use antenatal corticosteroids was associated with increased mortality and adverse neonatal outcomes (p < 0.001) (Schlapbach et al., 2012). Additionally, in a cohort of EPT multiples born at 24 to 25 weeks gestational age, infants exposed to antenatal corticosteroids had a lower risk for neurodevelopmental impairment (Boghossian et al., 2016). Those researchers found that rates of neurodevelopmental impairment or death were only 86  significantly lower among those of average weight for gestation but not for small for gestational age multiples (relative risk = 0.82; 95% CI, 0.74-0.92; and RR = 0.89; 95% CI, 0.80-0.98, respectively) (Boghossian et al., 2016). Therefore, antenatal corticosteroid treatment appears to have a variable protective power for infants. 5.4.1.2 Gestational Age All studies in the data set identified that younger gestational age infants, specifically those <25 weeks gestational age, were at increased risk for adverse outcomes, compared to more mature EPT infants, VPT infants, and term controls. However, none of the studies had the primary purpose of identifying predictors of outcomes and only one study indicated this was their secondary aim (Leversen et al., 2011). Schlapbach et al. (2012) found that gestational age was negatively associated with mortality and adverse neonatal outcomes (p < 0.001) and, along with Tyson et al. (2008), has suggested that it was the increased incidence of neonatal morbidities in this EPT population that made them more at risk for poor outcomes, over inherent biological factors specifically associated with immaturity at lower gestational ages. Exploring inherent biological factors that enhance resilience and have a certain protective capacity, that are currently beyond our understanding of favourable EPT outcomes, are increasingly becoming of interest to researchers and clinicians (Kumar et al., 2013; Tyson et al., 2008).  Within the selected study data set, the only correlate to behavioural outcomes was gestational age. However, other studies of infants born VPT have identified neonatal morbidities, such as BPD, NEC, and PVL, as predictors of attention problems in preschoolers up to the teenage years (Potharst et al., 2013; Whitaker et al., 2011). In a population cohort study of 826 infants born £27 weeks gestation, assessed as part of the ELGAN study at 2 years old, infants born to a mother with no post-secondary education, who had been exposed to second hand 87  smoke or had placental infection were at risk for attention and behaviour problems on a parent report scale (Downey et al., 2015). The researchers reported that those infants with fetal stem system thrombosis or mycoplasma infections were more at risk for attention deficit hyperactivity problems (Downey et al., 2015). It is noteworthy that findings of what is unrelated to specific outcomes may be of equal use to nurses and parents. Therefore, non-significant associations are equally important to report, such as the finding by De Groote et al. (2007) that vision problems were not significantly correlated with gestational age. 5.4.1.3 Morbidities Neonatal morbidities including RDS, BPD, ROP, sepsis, seizures and IVH were associated with lower gestational age. Schlapbach et al. (2012) also showed that BPD, major brain injury, ROP, and lower SES were major predictors for adverse neurodevelopmental outcomes at 2 years of age. The findings described by Schlapbach et al. and Tyson et al. (2008) reiterate that infants of lower GA may be more at risk for poor outcomes because of their increased incidence of neonatal morbidities. Other researchers have associated the inflammatory response and infection with brain injury and an increased risk of poor outcomes (Adams-Chapman & Stoll, 2006; Bassler et al., 2009; Carlos et al., 2011; Glass et al., 2015; Leviton et al., 2013; Salas et al., 2013). 5.4.1.4 Sex Results from the data set revealed male sex to be related to the rate of survival without a major disability, and parental report of overall development. These findings are supported by several current cohort studies and single centre reviews. In a Canadian study of infants born between 2000 and 2005 at ≤27 weeks gestation, male infants born between 24 and 26 weeks had significantly increased incidence of BPD, combined adverse outcomes, and mortality, despite 88  female infants having lower birth weights at each gestational age (Binet, Bujold, Lefebvre, Tremblay & Piedboeuf, 2011). In an Australian cohort study of all infants (n=2549) born in New South Wales and Australian Capital Territory NICUs between 1998 and 2004 inclusive, male sex was associated with increased mortality and neonatal morbidity (increased rates of Grade III to IV IVH, sepsis, and surgery in males) (Kent, Wright, & Abdel-Latif, 2012). The researchers also found an increase in moderate to severe functional disability in male children born £26 weeks gestation at 2 to 3 years, compared to female children, that was not significant when children were born at 27 weeks gestation (Kent et al., 2012).  In a large American database of infants born at <28 weeks gestation, boys were significantly more likely to have increased rates of morbidities and poorer outcomes compared to girls (CP: 10.7% versus 7.3%; Bayley Mental Index <70: 41.9% versus 27.1%; or neurodevelopmental impairment: 48.1% versus 34.1%); researchers suggested that some biological variables may contribute to the “male risk” (Hinz, Kendrick, Vohr, Poole, & Higgins, 2006). In a recent study, Swedish researchers considered associations of brain morphology in relation to sex differences in neonatal outcomes (Skiold et al., 2014). Skiold et al. (2014) found male infants, born at <27 weeks gestational age, had lower cognitive scores (p = 0.03), lower language scores (p = 0.04), and similar CP rates compared to female infants. In this study, Skiold et al. reported that no perinatal variables explained the variance in outcomes; however, differences were found on MRIs including more frequent delayed myelination in boys and more frequent cerebellar abnormalities in girls. Sex differences were also seen on normal MRIs: in boys, cerebellar volume was positively correlated with cognitive and motor scores (p = 0.04), 89  and in girls, white matter and cortical grey matter volumes were positively correlated with language scores (Skiold et al., 2014).  5.4.1.5 Birth weight This review found two studies that highlighted the increased risk for small for gestational age infants for death and disability, as well as higher number of developmental problems across all domains. In the national Swiss cohort of EPT infants, researchers found intrauterine growth restriction was significantly associated with mortality and adverse outcomes (Schlapbach et al., 2012). In a similar cohort study to those that met my recruitment criteria, the French EPIPAGE cohort study found that deficient postnatal growth was significantly correlated with poor neurological outcomes for AGA and SGA infants who were born in 1997 at 22 to 32 weeks gestational age. In the SGA infants, regardless of postnatal growth, there was a higher rate of parent-reported behaviour problems and cognitive deficiencies at 5 years old (Guellec et al., 2016). These are important findings, when considering neonatal outcome studies that stratify by gestational age or birth weight, or early studies that categorized immaturity based on birth weight alone, where birth weight may confound the findings. 5.4.1.6 Multiples Two studies in this review did not find statistically significant differences in the survival and long-term outcomes of EPT multiples. These findings are supported by a large prospective cohort study of infants born between 23 to 35 weeks gestation where neonatal morbidities, including IVH, ROP and NEC, were not associated with plurality. Being born SGA was associated with increased risk of mortality at all gestational ages, and researchers concluded that birth weight and prematurity drove mortality and morbidities in multiples (Garite, Clark, Elliott & Thorpe, 2004). Other studies found that adverse outcomes, such as mortality and CP in 90  multiples, were related to discordant birth weight, co-twin death, and twin-to-twin transfusion syndrome (Adegbite, Castille, Ward & Bajona, 2004; Scher et al., 2002). There has been a report that the protective effect of antenatal corticosteroids was not evident for small for gestational age twins (Boghossian et al., 2016). 5.4.1.7 SES This review found one European study (Kerstjens et al., 2012) that documented the association between SES and parent-reported developmental outcomes in EPT born preschoolers. In a single centre study of EPT infants born in Chicago between 2008 and 2010, maternal education was significantly associated with higher scores on motor, cognitive and language sub-scales on the BSID-III at 20 months corrected age, whereas age, occupation, race, and health insurance status were not. In a national cohort study of all infants <29 weeks gestation in Canada, SES was most predictive of poor language scores on the BSID-III at 2 years old, compared to all other developmental domains (Colby, 2016). This knowledge helps families and care providers to target interventions, support, and services to infants most at risk and points to potential parental interventions for families who may benefit the most and have the least resources. 5.4.2 Comorbidities Three studies in this data set highlighted the prevalence of multiple areas of disability and impairment that can affect EPT infants, especially in the case of CP occurring in conjunction with other significant impairments. This data set demonstrated that, even in those children who appear to be typically developing, there might be multiple areas of undetected deficits that may significantly impact school success. In an Australian cohort of “apparently normal” EPT infants with IQ >84 and without disabilities at 8 years old, 42% of the preterm infants versus 8% of term 91  classroom controls had motor scores in keeping with a diagnosis of DCD, and 30% versus 0% had scores in keeping with a diagnosis of severe DCD (Goyen & Lui, 2008). Even though a diagnosis of DCD is not currently given prior to 5 years of age (Sugden, 2006), in an Australian cohort of EPT infants ≤28 weeks gestational age, Goyen and Lui (2008) found that motor scores of less than the 27th percentile using the Peabody Fine Motor Scales at 3 years of age was predictive of a diagnosis at later ages. This may imply the importance of intervention prior to school entry. EPT and VPT infants free of severe disabilities at 2 years old, were found to have significantly lower developmental quotients compared to the reference sample, with mild delays in fine motor function, language, and sociability (p < 0.01). SES was associated with multiple areas of developmental delay (Charkaluk, Truffert, Fily, Ancel & Pierrat, 2010), which, without over-simplifying the complex challenges of vulnerable families, stresses the need for targeted interventions and support that consider social determinants of health. Learning disabilities are another area where EPT infants are generally found to have a higher incidence than term controls, even those with average intelligence. In a population of EPT born children from BC Women’s Hospital, who were free of impairment and demonstrated verbal and performance IQ >84 at 4.5 years, 65% had one or more learning disabilities, compared with 13% of their term counterparts (Synnes et al., 2010). In this cohort, Synnes et al. (2010) found written output, arithmetic, and reading were most frequently affected. Problems with visual-spatial, visual-motor, and verbal functioning, accounted for performance in math and reading in EPT whereas verbal functioning accounted for the learning disabilities seen in term children (Synnes et al., 2010). This finding suggests that there are different mechanisms at play in the development of term and preterm infants. 92  Recently, researchers characterized a phenotype or profile of infants born EPT that exposed the cumulative effect of multiple, less severe problems; those problems adversely affected overall functioning and performance at preschool age and beyond (Anderson, 2014). In a review of cohort studies addressing behavioural and psychiatric outcomes of EPT born children, researchers concluded that they identified a “preterm behavioural phenotype”, typified by inattention, anxiety, and social difficulties often occurring with subclinical symptomatology (Johnson & Marlow, 2014). ADHD, anxiety, and ASD were found in that group co-occurring with other morbidities, most commonly cognitive impairment (Johnson & Marlow, 2014). Altered parenting and attachment were also found to be related to self-regulatory problems and altered parent-infant interaction. Those elements affected both behavioural and social-emotional development (Clark, Woodward, Horwood & Moor, 2008). 5.4.3 Message Framing This data set revealed an array of terms that may be used to describe and categorize long-term outcomes. Just over half of the studies provided a balanced perspective about the long-term outcomes of EPT infants. The data that is presented from the NFUC at BC Women’s Hospital reports impairment rates and normal outcomes (Neonatal Follow-Up Program 2014-2015 Biennial Report, 2017). No discussion was provided, and the only conclusion that was drawn was that the percentage of children that meet the criteria for severe impairment had stayed stable since 2006. The utility of the data for nurses and health care workers would be maximized if it was synthesized and interpreted for them in a manner to share with parents. The terminology and the wording presented in the literature have effects on readers’ interpretations of the data, results, and conclusions, and shape the take home message. Message framing is important from the standpoint of the aims of the researchers but equally importantly 93  for the audience reading the literature and the end user. Researchers have described how the majority of literature focused on the rates and predictors of impaired outcomes, with limited information provided in the literature about factors associated with unimpaired outcomes of EPT infants (Kumar et al., 2013). Two studies that described the unimpaired outcomes and characteristics of low birth weight or extremely premature infants provided an optimistically-framed hypothesis and a balanced conclusion that stated that nearly one third of these infants had unimpaired outcomes (Gargus et al., 2009; Kumar et al., 2013). Kumar et al. (2013) specifically described how the children’s cognitive scores shifted toward the lower end of the normal distribution. It is possible that simply stating that these survivors had cognitive scores in the normal range does a disservice to community support workers that may be advocating for more support interventions. As previously mentioned, these problems with normative data and limitations of developmental tools may also cloud the fact that EPT infants are more at risk for difficulty with school attainment, despite a cognitive profile within the average range. Therefore, these issues may also contribute to an inaccurate representation of the cognitive profile of these children in relation to their peers, without considering other factors affecting cognitive function. Providing a positively balanced and realistic perspective is important to preserve hope while providing a clear message that EPT born children may require additional support to meet their full potential. In the Canadian context, Synnes et al. (2016) framed their results optimistically; they reported that 83.5% EPT infants born between 2009 and 2011, were free of significant neurodevelopmental impairments at 2 years of age. As discussed above, these results were balanced with the finding that 46% of EPT children met the criteria for a milder impairment in motor, cognition, language, or sensory-communication domains at 2 years of age. 94  A strong appreciation for parents’ preferences was not located during the course of this review. However, for nurses, physicians and the allied health team communicating with families, providing a balanced perspective is important and supported by the evidence. Hope is consistently identified as a central feeling of mothers of premature infants (Charchuk & Simpson, 2003; Fraga & Pedro, 2004; Green, 2015; Janvier, Barrington & Farlow, 2014; Plaas, 2007). Mothers described appreciating nurses who focused on encouraging hope and that their hope was easily destroyed by negative attitudes and words (Plaas, 2007). Lack of balanced disclosure was described as hindering parents’ involvement in their children’s care and parents’ ability to find hope (Charchuk & Simpson, 2005). Therefore, one way that health care professionals can support hope is by offering a balanced perspective of outcomes. Charchuk and Simpson (2005) asserted that nurses and health care professionals do not need to share parents’ hope but do need to recognize the importance of hope. Message framing can affect the understanding of risk information and alter the balance of effective communication. To my knowledge, this has only been studied in the context of antenatal consults, where neonatologists provide information to parents who are at risk of having a preterm infant, and discuss parental decisions regarding resuscitation and treatment of EPT infants in the NICU context. Haward, Murphy and Lorenz (2008) found that when information was framed as survival data parents were more likely to elect resuscitation. Janvier et al. (2014) described the following 5 factors that affected parents’ understanding and decision-making: 1) Discussing risks before benefits; 2) Focusing on disabilities instead of abilities and ways to promote resilience; 3) Basing parents’ understanding in the context of other experiences with preterm infants; 4) Framing outcomes “good” or “bad” in terms of hope; and 5) Forecasting of resiliency and strength by parents. Janvier et al. (2014) proposed that studying how best to 95  convey proportional outcomes to parents is essential, particularly when, in a review of the literature, the general public were found to have difficulty understanding the probability of health risks including percentages, frequencies, rates and proportions (Visshers, Meertens & Passchier, 2009). In an antenatal consult parents are making a decision about life and life-sustaining treatment, whereas the current integrative review focuses on nurses counselling about long-term outcomes closer to infants’ discharge to home or beyond. In this context, parents’ knowledge surrounding neurodevelopment outcomes cannot alter the future, unless this knowledge is supplemented with specific, and easy to implement interventions and strategies that are associated with improve outcomes. 5.4.4 Reporting and Interpreting Data Long-term outcome data are important for clinicians who are counselling parents beyond clinical decisions at the limits of viability. Policy makers, administrators, researchers, clinicians, educators, and therapists need this information to improve provision of delivery of care, education, and services (Rysavy et al., 2016). Attempts at comparing and contrasting the findings from the sample set selected for this review highlighted difficulties, including variabilities in comparison groups and differences in definitions of survival and impairment, choices for assessment tools, ages at assessment, and choices of chronological versus corrected age for scoring tests. Other studies have documented similar methodological issues that impede efforts at comparison, in addition to: heterogeneity of cohort (geographically defined versus multi-centre versus single centre), comparisons of birth weight versus gestational age, and low follow-up rates (Saigal & Doyle, 2008). Outcome results and conclusions can also be affected by factors that vary considerably between health care 96  systems and individual units, including: different treatment policies in the delivery room, active medical intervention, and health care practices (Zeitlin & Ancel, 2011). For this reason, it is also important to incorporate outcomes from unit-specific centres, to insure applicability to the population of interest. Arguably, unit-specific data may be used most practically when talking about long-term outcomes with an infant’s family at the bedside; consequently, some researchers asserted that it is therefore important that individual follow-up clinic data be reported effectively (Rysavy et al., 2016). In this review, the outcome data presented in the Neonatal Follow-Up Program 2014-2015 Biennial Report (2017) was difficult to compare to the results from other studies. Potentially, the results presented from the MiCare Study that included data from the Canadian Neonatal Network and Canadian Neonatal Follow-Up Network offer the best perspective for comparison of Canadian neonatal population outcomes. However, that report is limited to two-year-old children born EPT which precludes the longer-term outcomes parents seek information about. Nonetheless, the MiCare Study highlighted a significant association between NICU site and risk of impairment and found the rates of significant neurodevelopmental impairment ranged from 0 to 50%, with an overall rate of 16.5% (95% CI: 15% to 18%) between the 28 participating sites (Synnes et al., 2016). Between-hospital differences in outcomes were explored in the United States for infants born at 24 sites between 2006 to 2011; while active resuscitation at birth and treatment for prematurity accounted for variations in outcomes for 22 to 24 week gestational-aged infants, it did not account for differences in the outcomes found for infants born at 25 and 26 weeks gestational age (Rysavy et al., 2015). In order to address some of the varied methodological approaches and the difficulties noted in synthesizing results from diverse studies, researchers have recently come together to 97  propose guidelines for reporting outcomes of EPT births (Rysavy et al., 2016). The guidelines included 7 areas: 1) researchers should include the context of the study, including study dates, geography, and population source; 2) the point of inception for a study should fit with the primary aim of the study; 3) outcome findings should be reported stratified by gestational age; 4) researchers should account for treatment decisions and guidelines at the individual centres such as delivery route and selective versus active resuscitation outcome; 5) all outcome terms and definitions should be described, specifically, aggregate outcomes should be described and reported as well as each component outcome; 6) studies should be designed with a reference group and assessors should be blinded to eliminate preconception bias; and 7) studies should be reporting statistics with precision including 95% confidence intervals for better informed decisions and making comparisons of studies. The rationale for the guidelines flows from the literature. Recommendation one helps to ensure that studies including geographical cohorts or tertiary care centre cohorts, and in-born and out-born infants, are not compared as equivalents. In fact, Doyle (2004) found infants born after maternal transports had better outcomes than infants stabilized and transported to a tertiary care centre after birth.  Recommendation two is important because studies interested in NICU outcomes need to focus inception at the time of NICU admissions so that survival rates are not conflated by calculating them based on time of discharge from the unit. For example, in the data set for the integrative review, Leversen et al. (2011) and Zlatohlavkova et al. (2010) presented survival rates calculated either as the percentage of infants admitted to the NICU with survival to the assessment age of 5 years or the percentage of infants discharged from NICU with survival to the assessment age of 5 years. 98  Recommendation three recognizes that fetal maturation is one of the most important correlates with outcomes, and reports that combine outcomes across gestational ages may conceal potential alternative conclusions. Other influencing risk factors (antenatal steroid administration, birth weight, sex, and plurality), should be used to stratify results if sample sizes permit. (Saigal & Doyle, 2008) because outcomes are dependent on these factors. Recommendation four fits with findings from two studies: Ishii et al. (2013) and Ochiai et al. (2014) highlighted the importance of identifying delivery room practices, consider rates of late terminations, stillbirths, and intention to resuscitate when survival is being considered as an outcome. The fifth recommendation recognizes that in a number of instances definitions may be described; however, there is not always consensus on the definitions used, particularly in relation to impairment and the associated terminology (Haslam, 2016). Outcomes should be meaningful to families, clinicians, and society. Therefore, nurses and parents should be involved in deciding what outcomes are studied and how outcomes are defined. This review identified several studies that reported functional outcomes that may be more meaningful to families and society, but small numbers in each cell meant that the results could not be compared. Researchers should also be cognizant of the difference between short-term morbidity and long-term outcomes and should not combine the two (Rysavy et al., 2016). The sixth recommendation flows from some studies using term controls and others using historical normative data. Authors have identified problems with historical normative data, for example the Flynn effect. The Flynn effect refers to the progressive increase in IQ scores measured over time, which can minimize the developmental differences seen between EPT and 99  VPT born children and term born controls, especially when older versions of developmental tests are used (Baron et al., 2012; Rysavy et al., 2016; Woodward et al., 2009).  The seventh recommendation fits with Rysavy et al.’s (2016) emphasis on well-conducted and well-reported studies applying to primary research as well as secondary reports, media reviews, and practice guidelines. Therefore, a future goal is to apply these guidelines to future BC Women’s Hospital NFUC reports, where applicable. 5.5 Strengths and Limitations The results of this integrative review should be interpreted in light of the review methodology and the evidence available. First, an integrative review does not limit inclusion of studies based on quality appraisal (Whittemore & Knafl, 2005). While quality appraisal was undertaken to critically consider potentially different study results, interpretation, and integration, all studies meeting the inclusion criteria were included in the review. The inclusion of all studies may have limited the validity of some of the findings, arising from studies with less rigorous methodologies. For example, as previously noted, three studies did not clearly describe who performed the individual study assessments which is a problem because it is unknown whether measurements were standardized (Baron et al., 2011; Kytnarova et al., 2011; Moore et al., 2012). Other issues were raised with study’s methodology including bias associated with lack of blinding, lack of consist use of outcome measures and oversimplifying delay using developmental quotients. Second, in reviewing the key word search, it is possible that having included the term “extremely low gestational age” or “ELGA” may have resulted in the identification of other studies that may have met the inclusion criteria. As well, including survival terms in my key word search could have located other studies that would meet the inclusion criteria and address 100  parents’ potential questions about survival beyond NICU discharge. In this review survival outcomes were limited to survival presented in the context of impairment. Widening the search criteria to include children at school age may also have expanded the understanding of EPT infants’ longer-term outcomes. Third, the final data set of nine studies was small, considering the wealth of studies with outcome data available for younger age categories. Focusing on an older age group may have limited the number of studies I found pertaining to my research question. I anticipated that a greater variety of studies would have considered behaviour as an outcome domain and I was surprised that there was a gap in the literature relating to autism screening and diagnosis, attention deficit problems, and the behavioural profile of preterm infants. I also expected more consideration of health outcomes of EPT infants, considering the range of outcomes about which parents might have questions, for example re-hospitalizations, recurrent infections, respiratory health (reactive airway disease), cardiovascular health (hypertension), nutrition and growth, and dental health. This gap supports the importance of using a nursing lens to examine these data. A fourth limitation of this review is that, while the integration highlights many antecedents and correlates of the outcomes of EPT infants, it does not illuminate possible protective factors. In a recent Canadian national cohort study analysis, Rolnitsky et al. (2015) found that antenatal corticosteroids improved survival and reduced severe neurological injury, but that prophylactic indomethacin administration was not associated with reduction in neurological injury. These are important findings considering the association of brain injury with adverse long-term outcomes. A fifth limitation of this review is that the authors were not contacted for unpublished data. The role of unmeasured confounders could not be accounted for in my integration. 101  Contacting authors may have contributed more information to further appreciate the role of confounders, and a greater repertoire of relevant data to integrate, beyond the limitations of the reporting choices of each individual research group, or journal-imposed limitations. A final consideration is that no Canadian studies met the inclusion criteria. However, the gap is balanced by some of the methodological choices for the review, specifically inclusion and exclusion criteria aimed at focusing on studies from countries with similar philosophies, and medical policies and procedures, as well as the integration of outcome data from a local Canadian tertiary care centre. To my knowledge, this is the first review that considered the usefulness of the literature for nurses when addressing parents’ questions and concerns regarding developmental outcomes. The nine studies identified in the data set effectively highlight several issues that must be taken into consideration when interpreting each research article and when attempting to integrate the available evidence. This review also highlights the importance of having representative and recent outcome data that are specific to each NICU centre. 5.6 Implications for Nursing Practice Neonatal nurses are trained to provide highly specialized intensive care to premature and acutely ill neonates. In light of increased survival rates of premature infants, high rates of long-term impairment, and unchanged incidence of neurodevelopmental disability (Arpino et al., 2010), it is important for nurses to work from evidence-informed information about effects of life-saving measures based on long-term outcome data. One goal of this project was to investigate how the available literature can provide support for NICU nurses sharing information with parents about the long-term outcomes for EPT infants at preschool age. The results highlighted several gaps. There was a lack of empirical evidence about parents’ perceptions. This 102  can provide direction for research. This section highlights future goals which are embedded in a discussion of how nurses can become involved with relevant evidence and practice interventions, how they can best communicate with parents and families, and implications for population health, in the context of parental stress, neonatal outcomes, and nurses’ mental health (specifically, moral distress and burnout). 5.6.1 Gaps and Future Directions This review revealed that studies investigating outcomes for EPT infants at preschool age did not capture parents’ perceptions about outcomes, children’s quality of life, or family resiliency. Also, many studies did not use a definition of impairment that included any behavioural diagnosis, (specifically autism, or ADHD). Researchers also tended to cluster moderate and severe impairments together in their reporting structures, as were the results presented in the Neonatal Follow-Up Program 2014-2015 Biennial Report (2017). Unfortunately, parents may not perceive all moderate and severe impairments as equally problematic. Understanding parents’ perceptions about impairment definitions and classifications and important quality of life outcomes for ETP infants would provide direction for NICU staff members and researchers to provide relevant evidence-informed information. Therefore, future studies can include parents’ perspectives of important outcome measures in EPT children at preschool age.  This review has illuminated nurses’ needs to understand key variables that are associated with ETP born children’s outcomes, the strengths and limitations of the available research, and the factors that affect reporting and interpretation of the data. The results of this integrative review will be presented to BC Women’s Hospital NFUC team and NICU nurses. Minimal attention has been paid to methods by which nurses can be made aware of key outcomes for ETP 103  preschoolers. Because nurses risk basing their knowledge on worst-case scenarios, a single research study, biased information from colleagues, or outdated literature, identifying mechanisms to provide nurses with critically analyzed and integrated information is an important goal. This review has highlighted the importance of site-specific outcome data. The outcome data that is collected through NFUCs are currently used to help guide future treatments, inform practice guidelines and policies, and help neonatologists during perinatal consults with parents of preterm infants at the edge of viability. The role of audits was outlined as one of the five established standards for NFUCs by the 2015 Ontario Provincial Council for Maternal and Child Health (PCMCH). Audit was described by Suave and Lee (2006) as “the systematic study and reporting of neonatal outcomes with the intent of making changes to improve future outcomes” (p.268); audit relies on providing unit-specific information on the outcomes of premature infants. However, addressing how follow-up clinic data analysis could be used to educate the NICU staff on the outcomes of extremely preteen infants in the context of audit, as suggested by Sauve and Lee (2006), was not addressed by PCMCH (2015). I propose that NFUCs be mandated to utilize unit-specific outcome data to educate staff members, including nurses and other members of the allied health team. Creating structured educational channels may prepare nurses to address parents’ questions and concerns regarding long-term outcomes, specific to their unique patient populations. It is crucial for nurses and physicians to appreciate that it is impossible to accurately predict the future. Robertson et al. (2009) described complex interactions between a preterm infant’s gender, SES, presence of congenital anomalies, and the neonatal outcomes which make addressing the potential longer-term outcomes of any individual infant difficult. For nurses 104  speaking with parents, it is important to rely on data that is applicable to the specific population of parents and infants with whom they are speaking. As previously discussed, one way to address this is by relying on NICU site-specific data. Ohlsson (2002) aptly asserted that long-term developmental outcomes should be more consistently used as a primary measure in perinatal research and the need for those outcomes to be translated into knowledge for staff members in clinical settings. Ohlsson also suggested that a major challenge is to communicate the evidence of the effectiveness of perinatal interventions to staff members and families. Unfortunately, the author failed to offer suggestions about how this could be achieved. I argue that our challenge is to charge NFUC nurses and allied health staff with the role of translating research data into applicable knowledge to improve NICU staff members’ knowledge about long-term developmental outcomes and interventions parents can implement pre and post discharge to improve outcomes. Advanced practice nurses can be involved with projects that are aimed at synthesizing data from the literature, analyzing data registries such as those developed from the MiCare study, and analyzing data from individual NFUCs to present to their colleagues. Zhang, Holditch-Davis & Darcy-Mahoney (2015) also made recommendations about interventions nurses can use to prevent and alleviate poor school outcomes of infants born weighing <1000g, which overlaps with EPT gestational ages, starting in the NICU and moving beyond discharge. 5.6.2 Nursing Interventions Aimed at Improving Outcomes Early intervention programs have the potential to affect short and long-term outcomes for infants born EPT (Msall, 2009; Orton, Spittle, Doyle, Anderson & Boyd, 2009; Peters et al., 2009). Giving nurses access to evidence-informed outcome data would assist them to target their 105  discharge planning interventions and teaching to strategies that are known to help improve EPT infants’ specific outcomes. Based on audit information available through site-specific NFUCs, NICU administrators and educators can choose to implement interventions that target the highest risk outcomes in their unique NICU population. This section discusses how my integrative review directs nurses regarding potential interventions and provides some examples of short and long-term interventions that are associated with improved neurodevelopmental outcomes. It also provides suggestions for nurses’ choices for implementing interventions. Nurses benefit from awareness of the wide range of possible interventions that are associated with improved outcomes, from a nursing focus on family centered, developmentally-supported care to a parent education behavioural intervention program. This review highlights areas where EPT infants are disadvantaged in their development in comparison to term controls. Therefore, the identification of potential deficits directs nurses and educators toward specific early interventions in the areas of cognitive, language, motor, and behavioural development, as well as promoting positive parent-child interaction. Focusing on neonatal populations that are known to fare worse overall, such as infants with low birth weight and infants of mothers with low SES, also helps nurses direct their support and suggested interventions where they may have the greatest impact. The Newborn Individualized Developmental Care and Assessment Program (NIDCAP), a randomised control study of infants born <1500 grams (including ETP infants), was conducted in a large Canadian NICU and reported significantly reduced lengths of stay and incidence of chronic lung disease in those that received the intervention. Researchers found that, at 18 months corrected age, NIDCAP-exposed toddlers had lower rates of delay, specifically mental delay 106  (Peters et al., 2009). Unfortunately, a meta-analysis of the NIDCAP program found significant benefits of the program on requirements for supplemental oxygen and neurodevelopmental outcomes at 9 or 12 months but not at 2 years (Jacobs, Sokol, Ohlsson, 2002). Nonetheless, in a group of infants born at <34 weeks gestational age, the NIDCAP program was found to have positive long-term effects at 3 years of age on language, children’s behaviour, and mother-child interaction (Kleberg, Westrup & Stjernqvist, 2000). In this same cohort at 5 years of age, the benefits persisted for children’s behaviour (Kleberg, Westrup & Stjernqvist, 2000). Another type of NICU intervention that has been shown to improve both short and long-term outcomes is a parent education behavioural intervention program called Creating Opportunities for Parent Empowerment (COPE). This evidence-based program teaches parents what to expect from their infant in the NICU and post discharge, how to identify infant cues, and interactions that help enhance preterm growth and development (Melnyk et al., 2006). In a randomized control trial in two American NICUs, Melnyk et al. found parents that commenced the program in the NICU had improved mental health outcomes, enhanced parent-infant interaction, and infants had reduced hospital length of stay. Finding ways to promote positive parent-child interaction is particularly important because researchers have found that early and consistent maternal responsiveness through infancy and the preschool years was related to superior cognitive and social development at 4.5 years old, in EPT and VPT infants (Landry, Smith, Swank, Assel & Vellet, 2001). Parent-child interaction has also been studied in different preterm populations in relation to language and literacy skills. In a cohort study of very low birth weight infants, infant exposure to parental talk was a significantly stronger predictor of infant vocalizations and conversational turns than language from other adults (Caskey, Stephens, Tucker, & Vohr, 2011). Clark et al. (2008) found 107  that mothers’ behaviours, in response to EPT born toddlers’ emotions, influenced toddlers’ later social and emotional regulation. Other researchers have found that mothers’ use of regulation strategies at 30 months was positively related to toddlers’ appropriate emotional response to disappointment (Spinrad et al., 2004). Muller-Nix et al. (2006) found that EPT born-toddlers who were exposed to a cooperative pattern of parent-infant interaction, compared to those exposed to a controlling pattern, had similar development to term controls at 18 months of age. Further analysis of this cohort found that the interactional patterns were correlated with maternal perinatal traumatic stress but not specifically with perinatal risk factors, which underscores the importance of interventions that promote positive early parent-preterm infant interactions (Muller-Nix et al., 2006). Nurses and therapists can also implement non-resource intensive and low-cost educational initiatives at the bedside. In a review of the benefits of an early NICU intervention, researchers found that, in the short term, Kangaroo Mother Care reduced length of stay, strengthened secure parent-infant bonding, improved weight gain, and reduced the risk of neonatal morbidities. Kangaroo Mother Care had the most significant effect on a group of 12-to 24-month-old toddlers born EPT, who scored 10 to 13 points higher on the developmental quotient, in comparison to EPT infants who received traditional care (Tessier, Cristo, Nadeau & Schneider, 2011). Nurses can discuss with parents the importance of Kangaroo Mother Care for EPT infants and early exposure to books and literacy material and can model positive ways to engage infants and toddlers, based on the current research that points to the critical role early experiences have in shaping brain development and future outcomes (Clark et al., 2008). Beyond the NICU admission, a wide range of early intervention programs have been implemented internationally, with varying results. A Cochrane review of randomized and quasi-108  randomized control trials of early developmental intervention, implemented post-hospital discharge, found a positive association with higher developmental quotient scores by a standardized mean difference of 0.32 SD (95% CI 0.16 to 0.47; p < 0.001), and at preschool age a positive association with higher IQ scores by a standardized mean difference of 0.43 SD (95% CI 0.32 to 0.54; p < 0.001), but this effect was not found to be sustained at school age (Orton et al., 2009). Orton et al. found a small but significant effect on motor outcomes associated with early developmental interventions at infancy only, but no effect was found on the rates of CP. These findings suggest that nurses at the bedside, in the community, and working with families in NFUCs could be collaborating with community therapists and administrators to find appropriate evidence-informed interventions such as the ones presented above that target the needs of their specific populations of EPT infants and their families. While these interventions have the potential to contribute better outcomes, health care workers need to consider the most vulnerable families, who may not have the resources and capacity to participate in said interventions. Due to the lack of community and social support for families in general following the birth of a child, the current population of EPT survivors is doubly disadvantaged both from physiological and biological perspectives (Colby, 2016; Msall, 2009). Disadvantage is derived from both the complications of prematurity, as well as structurally from complications of inadequate community-based social support and resources. With mother-infant dyadic relations and parenting ability both acting as strong predictors of premature infants’ neurodevelopmental outcomes (Grunau et. al, 2009), nursing interventions associated with improved outcomes and nurses’ interactions with parents of EPT infants nearing discharge potentially have far reaching implications for these infants’ future development. 109  5.6.3 Nursing Communication with Parents While nurses are focusing their care on the acute neonatal period and preparing parents for discharge, parents may be looking to the future and seeking reassurance. Today there is a wealth of information available to parents through the Internet; however, this information may not always be reliable or accurate. Parents may expect nurses to validate or interpret available information. Nurses are uniquely positioned to answer parents’ questions, address their concerns, and provide support and reassurance. Discenza (2014) remarked that, while research is useful in predicting neonatal outcomes, information that is presented to parents must provide more than the worst-case scenarios. For nurses, physicians, and the allied health team members communicating with families, providing a balanced perspective is important (Charchuk & Simpson, 2005; Janvier et al., 2014). Neonatal nurses and medical professionals often counsel families from practical experience. Nurses vividly remember the babies with unfavourable outcomes and researchers have described nurses using these babies as a guide to information provision in times of doubt and uncertainty (Green et al., 2015). Green et al. (2015) found that nurses described their perceptions of fading hope when their previous experiences with EPT infants were perceived to have negative outcomes. When counselling parents who are at risk for EPT labour, less attention has been paid by health care professionals to the emotional and spiritual concerns of parents, compared to predictions of morbidity and death. Mothers reported mistrusting physicians who communicated only negative information and who seemed to have ‘given up’ (Boss, Hutton, Sulpar, West & Donahue, 2008). Therefore, it is important that nurses be sensitive, by offering a balanced picture and maintaining hope, when addressing parents’ questions and concerns. If parents give up, they 110  may not engage in very important, direct ways that promote positive outcomes, for example Kangaroo Mother Care, pumping breast milk, and engaging in activities with infants that promote bonding and attachment. A future goal is to work with NICU health care professionals, including nurses, and parents to develop an approach to addressing parents’ questions about long-term outcomes that simultaneously respects each profession’s scope of practice in the NICU context. I foresee three separate scenarios that must be considered for parents seeking information on outcomes: 1) decisions regarding the provision of care, i.e., intensive care treatment versus palliative care; 2) debriefs for parents after reception of difficult information regarding a diagnosis or prognosis; and 3) information about a stable infant where parents are enquiring about the long-term outcomes of surviving EPT infants. I argue that these scenarios should be addressed with different approaches by different groups of professionals but that similar concepts and communication themes be used. Families are different and require personalized care. A standardized check-box approach is not suggested for communicating long-term outcomes, especially when treatment decisions are being made (Janvier et al., 2014; Stokes, Watson & Boss, 2014). Parents were found to base their decisions and understanding on factors such as emotions, regret, hope, quality of life, resilience, and relationships (Boss et al., 2008). Therefore, these elements should be considered when discussing long-term outcomes with families. The majority of research about communicating outcomes to parents in the NICU is with the purpose of offering options regarding resuscitation of EPT infants and making decisions about withdrawing life-sustaining interventions. That set of circumstances is very different than counselling parents on long-term outcomes of stable infants closer to discharge. In the latter 111  situation, knowledge that is conveyed to parents will not have therapeutic benefits, unless it is paired with specific and easy to implement interventions and strategies, known to positively impact the future outcomes. One way this has been proposed is by balancing information about infant developmental outcomes, with quality of life data, and with information about resilience and how parents cope (Janvier et al., 2014). My integrative review did not capture parents’ perceptions about quality of life and family resiliency in the preschool years. However, in a Canadian study, parents were found to rate health states and quality of life for EPT born adolescents more highly than neonatologists and NICU staff members (Saigal et al., 1999). In addition, Saigal et al. (1999) found that adolescents born at extremely low birth weights (including adolescents born EPT) and their parents tolerated disability more than health care professionals. 5.6.4 Moral Distress Research studies have shown that hope was pivotal not only for parents but also for nurses in term of how they managed the discomfort of uncertainty related to the outcomes of EPT babies (Green et al., 2015). In the NICU context, nurses were concerned about their inability to predict the long-term outcomes and implications for quality of life for a child and family (Green et al., 2015; Molloy, Evans & Coughlin, 2015). In a Canadian study of nurses and residents, increased moral distress was felt by those care providers who had inaccurate knowledge regarding long-term outcomes (Janvier et al., 2007). Both physicians and nurses have consistently underestimated the chances of survival and good long-term outcomes for infants born VPT, with nurses being the least optimistic (Blanco et al., 2005; Janvier et al., 2007; Lee, Penner & Cox, 1991). 112  NICU nurses and other care providers of infants born EPT are at risk of feeling overwhelmed and experiencing care burden and moral distress, if they lose sight of the potential for overall positive outcomes for preterm infants. Within the health care context, studies have associated care providers’ moral distress with anxiety, depression, loss of self-worth, powerlessness, compassion fatigue, burnout, job dissatisfaction, as well as other behavioural signs (Elpern, Covert & Kleinpell, 2005; Newsom, 2010). Workshops, presentations, and other knowledge translation mechanisms may help nurses remain apprised of current long-term outcome research, including factors that are associated with outcomes and strategies that may assist in optimizing resilience for EPT infants and their families. Access to this information may help nurses to feel less powerless, provide them knowledge to articulate their concerns constructively, and help them cope with the uncertainty of long-term developmental outcomes more effectively (Prentice, Janvier, Gillam & Davis, 2016). 5.7 Summary In this section I summarized and discussed the results of my integrative review, in particular, the four themes I identified and situated in the neonatal outcome literature. I identified several areas for future research and future goals in the context of gaps in the literature. I discussed how this project is relevant for nurses, in relation to nursing interventions aimed at improving neurodevelopment outcomes, nurses’ communication with families, and nurses’ moral distress. Future research was proposed as necessary to incorporate parents’ perspectives on specific outcomes and outcome definitions. Future goals were identified and included applying reporting guidelines to future NFUC reports, presenting the findings of this project to BC Women’s Hospital NFUC and NICU teams, establishing channels for knowledge translation between BC Women’s Hospital NFUC and NICU, and initiating appropriate interventions that 113  target cognitive, language, motor and behavioural outcomes, as well as parent-infant interaction. These goals would involve cooperation between the BC Women’s Hospital NFUC and the NICU. The work of these health care teams would involve developing communication tools for nurses and allied health care providers addressing neurodevelopmental outcomes that offer a balanced perspective and recognize the importance of hope. 5.8 Conclusion The aim of this project was to undertake an integrative and critical analysis of the literature to describe the outcomes of EPT infants, defined as infants born at 25 weeks gestational age or less, and to integrate local NICU outcome data, with the critical literature analysis. The ultimate goal was to describe the utility of the findings for nurses and other allied health care providers who speak with parents. The first chapter identified nurses’ limited knowledge of the neurodevelopmental outcomes of EPT infants, despite being uniquely positioned to address parents’ questions and concerns related to future outcomes. The second chapter provided a literature review examining shorter term outcomes for infants born £25 weeks gestation. The third chapter described my use of an integrative review methodology, following Whittmore and Knafl’s (2005) process, to critically analyze the literature on neurodevelopmental outcomes of EPT infants at preschool age. The results presented in chapter four focused on major areas of impairment. Severe impairment rates were estimated between 11% and 14.5% in the data set and moderate to severe impairment were estimated from 30% to 35%. Functionally, EPT infants born at £25 weeks gestational age had higher areas of moderate and severe motor impairment than EPT infants born at £27 weeks gestational age. Overall, I found that EPT born infants who scored in the normal range at preschool age were still disadvantaged in cognition, language, and motor domains 114  compared to their term born, age-matched controls. I found gaps in study reports of cognitive function, behaviour, and health, and most noteworthy, in parents’ perceptions of children’s outcomes. The gaps provide direction for future research for infants between ages 3 to 5 years. In my limited analysis of the literature of infants born EPT, I concluded that findings from individual studies in the data set should be interpreted with caution. Outcomes should come from unit-specific audit data collected over time, from large national cohort databases and registries, and from rigorous systematic reviews and integrative reviews that address confounding factors. In chapter four I also presented four themes from my thematic analysis of the integrated data set: correlates of outcomes, comorbidities, message framing, and factors that affect reporting outcomes and interpreting data. In chapter five I suggested that these themes provide nurses with a preliminary understanding of neurodevelopmental outcomes of EPT born children at preschool age, issues related to documenting outcomes, and data interpretation. With respect to correlates of outcomes, antenatal steroid administration was positively associated with survival with or without impairment, smaller gestational age was associated with poorer neurodevelopmental outcomes and higher neonatal morbidities. Male sex was negatively associated with survival without a disability, while a significant difference in the preschool-age outcomes of multiples was not found. With respect to comorbidities, one third of the data set illuminated multiple areas of disability in EPT infants at preschool age; they occurred at levels of severe impairments as well milder impairments and delays. These findings indicated multiple areas of hidden deficits even for preschoolers with what might appear to be typical development. With respect to reporting outcomes and interpreting data, there was significant heterogeneity within the data set that limited integration. Methodology, data collection, interpretation, and reporting should be consistent with reporting guidelines to help guide drawing appropriate 115  conclusions and communicating them to NICU staff members and families. Data should not be presented and left for staff members to interpret, without some analysis, conclusions and crafted messages to support appropriate understanding of data based on the previously mentioned factors. In chapter five I outlined future steps, including aligning future in-house audit data available through BC Women’s Hospital NFUC with the current reporting guidelines set forth by Rysavy et al. (2016), as well as presenting the information gleaned from this review to the front-line team at BC Women’s NICU, where health care providers care for EPT infants. A wealth of outcome data is being collected through NFUCs and registries mandated to provide clinical audits; however, currently there is no formal mechanism to relay relevant and integrated outcome data to neonatal nurses. As part of the study implications, I proposed establishing educational pathways for knowledge translation. I discussed the opportunity for nurses to develop communication guidelines so that they can effectively and sensitively communicate outcomes, as well as share basic evidence-informed strategies with families, focused on parent-child interaction, attachment, and motor, cognitive, and language development, that have the potential to improve neonatal outcomes. In summary, the integrative analysis of the literature of outcomes of infants born £25 weeks gestation at preschool age provides nurses with an overview of reported outcome data in the areas such as survival with and without an impairment, impairment rates, overall development, motor and cognitive function, behaviour, vision and hearing function, growth, and health. Findings from the integrative review revealed both positive and negative outcomes for EPT infants. The findings suggest that, in addition to published empirical results, interpreted unit-specific outcome data, that follow reporting guidelines, be presented from a balanced 116  perspective. Acknowledging infants’ potential for healthy development and recognizing parents’ need for hope underpins effective nurse-family communication regarding extremely premature infants’ developmental outcomes and the selection of appropriate nursing interventions. This review and its future goals have benefits not only for families and future outcomes of EPT infants but also for improving nursing unit morale, nursing satisfaction, and decreasing nurses’ care burden. In order to give children the best chance at optimal outcomes, it is imperative that families and health care providers have the knowledge and understanding of the longer-term outcomes of extreme prematurity for neurodevelopment, as well as what can be done to support optimal outcomes.  117  References Aarnoudse-Moens, C. S. H., Weisglas-Kuperus, N., van Goudoever, J. B., & Oosterlaan, J. (2009). Meta-analysis of neurobehavioral outcomes in very preterm and/or very low birth weight children. Pediatrics, 124(2), 717-728. doi:10.1542/peds.2008-2816 Abily-Donval, L., Pinto-Cardoso, G., Chadie, A., Guerrot, A., Torre, S., Rondeau, S., & Marret, S. Perinatal Network of Haute-Normandie. (2015). Comparison in outcomes at two-years of age of very preterm infants born in 2000, 2005 and 2010. 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Children crawl on hands and knees with a reciprocal pattern, cruise holding onto furniture and walk using an assistive mobility device as preferred methods of mobility. LEVEL III: Children maintain floor sitting often by "W-sitting" (sitting between flexed and internally rotated hips and knees) and may require adult assistance to assume sitting. Children creep on their stomach or crawl on hands and knees (often without reciprocal leg movements) as their primary methods of self-mobility. Children may pull to stand on a stable surface and cruise short distances. Children may walk short distances indoors using a hand-held mobility device (walker), and adult assistance for steering and turning. LEVEL IV: Children floor sit when placed but are unable to maintain alignment and balance without use of their hands for support. Children frequently require adaptive equipment for sitting and standing. Self-mobility for short distances (within a room) is achieved through rolling, creeping on stomach, or crawling on hands and knees without reciprocal leg movement. LEVEL V: Physical impairments restrict voluntary control of movement and the ability to maintain antigravity head and trunk postures. All areas of motor function are limited. Functional limitations in sitting and standing are not fully compensated for through the use of adaptive equipment and assistive technology. At Level V, children have no means of independent movement and are transported. Some children achieve self-mobility using a powered wheelchair with extensive adaptations. Reference: Palisano, Rosenbaum, Bartlett, & Livingston (2007).   145  Appendix B  Protocol for Data Collection 1. Identification Article Title  Journal Title  Authors Name: Institution: Background: Country  Year of publication  Institution holding the study  Hospital  University  Research Centre  Institution  Multi-centre study  Other institution  No identification of setting Type of publication  Nursing   Medicine   Other health discipline 2. Methodological characteristics of the study  Type of design  Experimental design  Quasi experimental design  Non-experimental design       Cohort          prospective       Case study    retrospective  Non research design  Literature review  Report of experience 146   Other Study Aim/Question (primary and secondary)  Sample Selection  Random  Convenience  Other Initial sample size:   Final sample size: Birth year cohort: Gestational age at birth: Age at assessment: Ethnicity: Inclusion/exclusion criteria: Treatment of data   Investigations performed Observational data Questionnaire data Interview data Confounding Variables considered  yes no Control group  yes no Measurement instrument  yes  no 3. Results/Main Findings  Analysis Statistical treatment Qualitative analysis Significance level Implications Are the conclusions justified based on the results? What are the recommendations from the authors? 4. Assessing methodological rigor  147  Identification of restrictions or biases  Reference: Adapted from Souza, Silva & Cavalho (2010). 

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