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The role of health literacy in chronic respiratory disease management Shum, Jessica 2017

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THE ROLE OF HEALTH LITERACY IN CHRONIC RESPIRATORY DISEASE MANAGEMENT by  Jessica Shum  B.A., Simon Fraser University, 2011  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF  MASTER OF SCIENCE in  THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (Experimental Medicine)  THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver)  October 2017  © Jessica Shum, 2017 ii  Abstract  Background: Health literacy (HL) is defined as the ability to access, understand, evaluate, communicate, and use health information to make informed health decisions. Studies have reported a relationship between low HL and less health-related knowledge, poorer skills in taking medication, and treatment non-adherence. Despite this, measurement of HL (in particular to the abovementioned domains) is still in its infancy and the impact of HL on self-management (via a key informant lens) has yet to be studied.  Objectives: The main aim in this thesis was to incorporate both sides of the HL equation (patients and key informants) into investigating the role of HL in chronic respiratory disease management. This led to two objectives: 1) To identify HL tools used in asthma and/or chronic obstructive pulmonary disease (COPD) management and examine their characteristics; and 2) To assess key informants’ perspectives re barriers to asthma/COPD self-management and the solutions to address such challenges.  Methods: A systematic review was undertaken to review the literature on HL tools that assessed any of the five domains on asthma/COPD patients. Following this, a qualitative study was conducted with national and international key informants (e.g., health care professionals (HCPs), researchers, and policymakers) who were involved in the care of asthma/COPD patients to determine perceived patient barriers to competent self-management and the possible solutions to overcome these barriers.  Results: The review identified 65 tools with a majority assessing ‘understanding’ and a minority on ‘communication’. Only two tools assessed all five domains and less than half had been validated. Thematic analysis of the 45 interviews resulted in seven barriers surrounding the themes of time, information overload, and jargon and six solutions focusing on tailored education, better communication, and building relationships.  iii  Conclusions: Self-management is a combined effort achieved only through the engagement of patients, HCPs, and the system. Both studies showed shortcomings in the ‘communication’ domain, possibly due to the complex phenomenon of communication requiring at least two individuals in the process. These findings suggest that HL researchers and health care programs should recommend new strategies for chronic respiratory disease management with a specific emphasis on the concept of ‘communication’. iv  Lay Summary  A patient’s level of health literacy (HL), defined as the ability to: (1) access, (2) understand, (3) evaluate, (4) communicate, and (5) use health information, is important to properly self-manage chronic condition(s). Existing asthma and/or chronic obstructive pulmonary disease (COPD) measurement tools are not complete in terms of assessing all five domains of HL and are primarily focused on ‘understanding’ while lacking information on a patient’s ability to ‘communicate’ health information. Health care professionals (HCPs) also play an important part in successful self-management. HCPs, researchers, and policymakers acknowledge the limitations in their communication with asthma/COPD patients and suggest actions that they can take to combat these barriers such as tailoring health education to the patient’s HL level and building trustful relationships.  v  Preface  All chapters in this thesis are based on work conducted in the UBC’s Division of Respiratory Medicine, Department of Medicine under the supervision of Drs. J. Mark FitzGerald and Iraj Poureslami as part of the Canadian Institutes of Health Research (CIHR) funded ‘Development and validation of Canadian health literacy measurement tool for chronic disease management’ grant. I was responsible for all procedures of chapters 2 and 3 with the exception of performing the systematic review search and acquiring ethics approval. My supervisor, Dr. J. Mark FitzGerald and MSc committee members, Drs. Iraj Poureslami, Laura Nimmon, and Iris van der Heide provided me with their comments and advice throughout the thesis work.  Two versions of chapter 2 have been published.  Publication in peer-reviewed journal Shum J, Poureslami I, Doyle-Waters M, FitzGerald JM. The application of health literacy measurement tools (collective or individual domains) in assessing chronic disease management: a systematic review protocol. Syst Rev 2016;5:97. I conducted formulation of the research questions, search strategy, study inclusion criteria, data extraction forms, and wrote most of the manuscript. The co-authors provided methodological guidance and assisted in writing of the manuscript. Published abstract Shum J, Poureslami I, Wiebe D, Nimmon L, Doyle-Waters M, FitzGerald JM on behalf of the Canadian Airways Health Literacy Study Group. Airway diseases and health literacy (HL) measurement tools: a systematic review to inform respiratory research and practice. Am J Respir Crit Care Med 2017;195:A1405. I conducted formulation of the study, study selection, data extraction, data synthesis, and developed the vi  abstract. The co-authors provided methodological guidance, conducted study selection and data extraction, and assisted in writing of the abstract.  Versions of chapters 2 and 3 have been drafted and submitted for publication in peer-reviewed journals.  Shum J, Poureslami I, Wiebe D, Doyle-Waters M, Nimmon L, FitzGerald JM on behalf of the Canadian Airways Health Literacy Study Group. Airway diseases and health literacy (HL) measurement tools: a systematic review to inform respiratory research and practice. I conducted formulation of the study, study selection, data extraction, data synthesis, and wrote most of the manuscript. The co-authors provided methodological guidance, conducted study selection and data extraction, and assisted in writing of the manuscript. Shum J, Poureslami I, Wiebe D, van der Heide I, Nimmon L, Hakami R, et al. Bridging the gap: Key informants’ perspectives on the barriers and solutions for chronic respiratory disease management. I conducted formulation of the research questions, data collection, data analysis, and wrote most of the manuscript. The co-authors provided methodological guidance, conducted data collection and interpretation, and assisted in writing of the manuscript.  Ethics approval was obtained for chapter 3 from the UBC’s Behavioural Research Ethics Board (ethics certificate #H15-01954-A004). vii  Table of Contents  Abstract ............................................................................................................................................. ii Lay Summary .................................................................................................................................... iv Preface .............................................................................................................................................. v Table of Contents ............................................................................................................................. vii List of Tables ...................................................................................................................................... x List of Figures ................................................................................................................................... xii List of Abbreviations ........................................................................................................................ xii Acknowledgements......................................................................................................................... xiv Dedication ....................................................................................................................................... xv Chapter 1: Introduction ...................................................................................................................... 1 1.1 Background .................................................................................................................................. 1 1.1.1 Asthma and chronic obstructive pulmonary disease (COPD) self-management ................ 1 1.1.2 Association between health literacy (HL) and self-management ....................................... 2 1.2 Outline of this thesis .................................................................................................................... 3 Chapter 2: Airway diseases and health literacy (HL) measurement tools: a systematic review to inform respiratory research and practice ....................................................................................................... 5 2.1 Introduction ................................................................................................................................. 5 2.2 Methods ...................................................................................................................................... 8 2.2.1 Study inclusion criteria ....................................................................................................... 8 2.2.2 Search strategy ................................................................................................................... 9 2.2.3 Data sources and selection ............................................................................................... 10 viii  2.2.4 Data extraction and synthesis ........................................................................................... 11 2.3 Results ....................................................................................................................................... 12 2.3.1 Characteristics of measurement tools .............................................................................. 13 2.3.2 Mapping of tool items to HL domains .............................................................................. 69 2.3.3 Reporting key components of validated tools .................................................................. 72 2.4 Discussion .................................................................................................................................. 73 2.5 Conclusions ................................................................................................................................ 76 Chapter 3: Bridging the gap: Key informants’ perspectives on the barriers and solutions for chronic respiratory disease management ..................................................................................................... 78 3.1 Introduction ............................................................................................................................... 78 3.2 Methods .................................................................................................................................... 80 3.2.1 Study sample and recruitment ......................................................................................... 80 3.2.2 Interview guide and data collection ................................................................................. 80 3.2.3 Data analysis ..................................................................................................................... 81 3.3 Results ....................................................................................................................................... 82 3.3.1 What asthma and COPD patients should know about their disease? .............................. 84 3.3.2 Perceived barriers to competent self-management......................................................... 85 3.3.2.1 Information overload ................................................................................................... 85 3.3.2.2 Inconsistent information received from HCPs ............................................................. 85 3.3.2.3 Time constraints ........................................................................................................... 86 3.3.2.4 Medical jargon and reading level of materials ............................................................. 86 3.3.2.5 Beliefs and attitudes about treatment ......................................................................... 87 3.3.2.6 Lack of patient involvement in developing educational materials .............................. 87 ix  3.3.2.7 Memory problems and age .......................................................................................... 87 3.3.3 Possible solutions and evaluation ..................................................................................... 92 3.3.3.1 Take-home materials .................................................................................................... 92 3.3.3.2 Tailoring education ....................................................................................................... 92 3.3.3.3 Follow-up visits ............................................................................................................. 93 3.3.3.4 Promotion of questions ................................................................................................ 93 3.3.3.5 Better communciation by HCPs and building relationships ......................................... 93 3.3.3.6 Teach-back method ...................................................................................................... 94 3.4 Discussion .................................................................................................................................. 98 3.5 Conclusions .............................................................................................................................. 101 Chapter 4: Conclusions ................................................................................................................... 102 4.1 Overview of the two studies.................................................................................................... 102 4.2 Strengths and limitations ........................................................................................................ 103 4.3 Implications of research findings ............................................................................................. 105 4.4 Concluding remarks ................................................................................................................. 107 Bibliography .................................................................................................................................. 108 Appendices .................................................................................................................................... 120 Appendix A: MEDLINE and Embase (Ovid) search ................................................................................ 120 Appendix B: Data extraction forms ...................................................................................................... 124 Appendix C: Checklist for reporting key components of validated tools ............................................. 126 Appendix D: Qualitative interview guide .............................................................................................. 128 x  List of Tables  Table 2.1 Definitions and examples of health literacy (HL) domains ........................................................... 9 Table 2.2 Characteristics of asthma measurement tools ........................................................................... 17 Table 2.3 Characteristics of COPD measurement tools .............................................................................. 50 Table 2.4 Characteristics of asthma/COPD measurement tools................................................................. 66 Table 3.1 Participants' descriptive details (n=45) ....................................................................................... 83 Table 3.2 What asthma and COPD patients should know about their disease .......................................... 84 Table 3.3 Quotes on perceived barriers to competent self-management ................................................. 89 Table 3.4 Quotes on possible solutions and evaluation for perceived self-management barriers ............ 96   xi  List of Figures  Figure 2.1 Health literacy (HL) search conceptualization ........................................................................... 10 Figure 2.2 PRISMA flow diagram of selected studies ................................................................................. 13 Figure 2.3 Visual summary of 65 measurement tools by HL domains and disease .................................... 72    xii  List of Abbreviations  ABC  Asthma Behaviour Change AHP  Allied Health Professionals ANQ  Asthma Numeracy Questionnaire  AP  Advisory Panel ASMQ  Asthma Self-Management Questionnaire  ATAQ  Asthma Therapy Assessment Questionnaire BT  Batalla Test BCKQ  Bristol COPD Knowledge Questionnaire CCHL  Calgary Charter on Health Literacy CEPHL  Canadian Expert Panel on Health Literacy CIHR  Canadian Institutes of Health Research COPD  Chronic Obstructive Pulmonary Disease COPD-Q Chronic Obstructive Pulmonary Disease Knowledge Questionnaire COPD-SMI Chronic Obstructive Pulmonary Disease Self-Management Interview CPR  Cardiopulmonary Resuscitation CQ  12-item Consumer Asthma Knowledge Questionnaire ED  Emergency Department HCP  Health Care Professional HL  Health Literacy  HLS-EU-Q European Health Literacy Survey Questionnaire IQ  Intelligence Quotient xiii  KAP  Knowledge, Attitude, and Practice KASE-AQ Knowledge, Attitude, and Self-Efficacy Asthma Questionnaire LINQ  Lung Information Needs Questionnaire MARS  Medication Adherence Report Scale MDI  Metered-Dose Inhaler MeSH  Medical Subject Headings MISS  Medical Interview Satisfaction Scale NVS  Newest Vital Sign PACT  Patient Asthma Concerns Tool PRISMA Preferred Reporting Items for Systematic Reviews and Meta-Analyses QoC  Quality of Communication Questionnaire REALISE REcognise Asthma and LInk to Symptoms and Experience REALM  Rapid Estimate of Adult Literacy in Medicine RCT  Randomized Control Trial SMOG  Simple Measure of Gobbledygook SMS  Short Message Service SOLDQ  Seattle Obstructive Lung Disease Questionnaire TOFHLA Test of Functional Health Literacy in Adults TV  TeleVision UBC  University of British Columbia UCOPD  Understanding COPD Questionnaire   xiv  Acknowledgements  I would like to express my sincerest gratitude to my supervisor, Dr. J. Mark FitzGerald, for his unconditional support and guidance throughout my MSc program. I am extremely thankful to have been provided with the opportunity to learn and grow under his notable leadership. Thank you to the rest of my supervisory committee; Drs. Iraj Poureslami, Laura Nimmon, and Iris van der Heide for all their kind support, guidance, and words of encouragement every single step of the way. I owe particular thanks to Dr. Iraj Poureslami for his mentorship and for believing in me from the first day we met.   Special thanks are also given to my parents and my brother for their wholehearted love and patience.   Finally, I would like to thank the co-authors of the three manuscripts written from this thesis for volunteering their time and for providing me with thoughtful insights into the development of the research questions, methodologies, and findings.  xv  Dedication  To my parents and brother 1  Chapter 1: Introduction  1.1 Background 1.1.1 Asthma and chronic obstructive pulmonary disease (COPD) self-management The incidence and prevalence rates of chronic diseases are increasing worldwide due to an aging population and changes in lifestyles [1,2]. Asthma and chronic obstructive pulmonary disease (COPD) are two chronic respiratory diseases that have a significant global burden [3-5]. It has been estimated that over three million Canadians are affected by asthma [6] with prevalence rates increasing over the last 20 years [6-9]. With the current and increasing incidence and prevalence, asthma also creates substantial societal burden with high numbers of emergency department (ED) visits, hospitalizations, and prescriptions filled, all negatively affecting health-related quality of life [6,10,11]. COPD is currently the fourth leading cause of death in the world [12,13] and is the leading cause of medical hospitalizations in Canada [14]. In the province of British Columbia, Canada, the total number of COPD cases is projected to grow by more than 150% between 2010 and 2030 as a result of population aging. COPD-related hospitalization has also been predicted to increase by 210% during this period [15].  Self-management, described as the tasks and actions an individual living with a chronic disease must perform in order to fully gain control of his or her condition, is crucial to prevent the worsening of asthma and COPD, ultimately minimizing the unnecessary use of care and promoting better health-related quality of life for those affected [16-19]. Such tasks include being able to properly recognize and monitor symptoms, correctly use and adhere to medical regimens and instructions, and successfully cope and deal with lifestyle changes or other factors associated in living with the chronic disease [19-22]. To be able to adequately self-manage a chronic condition requires the ability and process of demonstrating sufficient 2  knowledge, skills, confidence, and judgment to make informed decisions to live well and overcome barriers and obstacles faced in disease management [20-21]. Optimal self-management includes goal setting, educational interventions, active involvement in decision making, and collaboration between the patient, their family, and the health care professionals (HCPs) involved in the care of the disease [20,22].   1.1.2 Association between health literacy (HL) and self-management The term health literacy (HL) was first used in 1974 in a discussion panel regarding health education as a social policy issue affecting burden on the health care system [23]. Since then, it has been discussed within the context of literacy and health [24] but as the concept evolved, more definitions were suggested by different health researchers and organizations [24,25]. Most commonly, HL is labeled as a spectrum of knowledge and skills a person must require to effectively obtain, process, and understand health information [25-28]. In 2009, the Calgary Charter on Health Literacy (CCHL) [26] conceptualized a model inclusive of five core domains, defining HL as a person’s ability to: (1) access, (2) understand, (3) evaluate, (4) communicate, and (5) use health information to make informed decisions for one’s health. In addition to broadening the scope of patient competency in managing their chronic disease, the CCHL definition also underscores the importance of health care professionals’ HL performance in their delivery of information, and furthers the inclusion of these concepts in the structure of the health care system [29]. This wide-ranging definition, with relevance to many key players in the health care interaction (e.g., patients, clinicians, nurses, and other allied health professionals, etc.), established the CCHL definition as the reference standard. The concept of ‘numeracy’ has also been proposed as an important component of HL, referring to the capability of individuals to interpret and apply numerical health information needed to make effective health decisions [30].   3  In 2011, Berkman et al. [31] updated the results of their 2004 systematic review [32] on HL and health outcomes and identified that low HL was associated with severe adverse health outcomes (e.g., poorer overall health status and higher mortality rates), greater use of health care services such as increased hospitalizations, greater use of emergency care, and a lower ability to interpret prescription labels and health messages. More specifically, the authors found that low HL was related to poorer skills in taking medications and less health-related knowledge. The relationship between numeracy and health outcomes was inconclusive due to limited studies and inconsistent results. Another systematic review conducted by Easton et al. [33] on low HL and health in working age adults reported a relationship between low HL and access to and use of health services (e.g., less appropriate use of services) as well as poorer medication adherence.  In a cross-sectional study by Williams et al. [34] in Torrance, California, almost half of the patients with hypertension or diabetes were found to have inadequate HL and those patients had significantly less knowledge of their disease and essential self-management skills. In terms of asthma, Gazmararian et al. [35] conducted a study with Medicare enrollees aged 65 years or older who had at least one chronic disease (asthma, diabetes, congestive heart failure, or hypertension) and showed that asthma patients with inadequate HL were significantly less likely to correctly answer 40% of asthma-related questions.   1.2 Outline of this thesis In this thesis, I initially focused in chapter 1 on observing the role of HL in chronic respiratory disease management. This thesis aimed to first review the current literature on the measurement of HL in relation to asthma/COPD management (tools only assessing the patient’s ability) and then provide insights into the barriers and solutions of self-management via the perspectives of key informants who are involved in 4  the care of patients with asthma and/or COPD (concentrating on the other key players in self-management). By incorporating both the patients’ ability and viewpoints of key informants, the information obtained on HL was comprehensive and inclusive of the role of the patient and the health care system in regard to self-management. To determine the existence of HL measurement tools for asthma/COPD management and its deficiencies (e.g., whether present tools are comprehensive of all five HL domains and/or have been validated), a systematic review was undertaken in chapter 2. Following in chapter 3, a qualitative study was conducted to identify the perspectives of HCPs (e.g., clinicians, respiratory educators, pharmacists, nurses, etc.), researchers, and policymakers on the perceived barriers an asthma and/or COPD patient may be faced with and the possible solutions that they suggest to overcome and address such challenges. The findings in this chapter were based on data that were obtained as part of a larger study aiming to develop and validate a Canadian HL measurement tool for chronic disease management. Finally, in chapter 4, I summarized and discussed the findings of the two studies presented in this dissertation. I also highlighted clinical and policy implications as well as identify potential research actions that can be done to build on the work from this thesis.        5  Chapter 2: Airway diseases and health literacy (HL) measurement tools: a systematic review to inform respiratory research and practice  2.1  Introduction The Calgary Charter on Health Literacy (CCHL) [26] defines health literacy (HL) as the ability to: (1) access, (2) understand, (3) evaluate, (4) communicate, and (5) use health information to make informed decisions for one’s health. ‘Numeracy’ is also an important component of HL and is referred to as “an individual’s capacity to access, process, interpret, communicate, and act on numerical, quantitative, graphical, biostatistical, and probabilistic health information needed to make effective health decisions” [30]. Research on HL has grown tremendously in the past two decades but despite the importance of each HL domain being well-established individually [29,36] and the CCHL’s 5-domain model being endorsed and approved by different HL researchers and experts [37,38], measurement of HL is still in its infancy and significant limitations (e.g., focusing on only one or two aspects of HL, such as word comprehension or reading ability [39,40]) remains [38-41]. The most often used HL research tools are the Test of Functional Health Literacy in Adults (TOFHLA) [42], the Rapid Estimate of Adult Literacy in Medicine (REALM) [43], and the Newest Vital Sign (NVS) [44,45]. These tools largely measure reading ability (e.g., word pronunciation), print literacy, or numeracy [43] and fail to address the other elements of the 5-domain model, for example, the ability to critically evaluate and apply such information in day-to-day life [41].   The limitations with existing tools prevent researchers and clinicians from effectively assessing and measuring HL [36-40,46]. More specifically, existing tools do not adequately capture the data necessary to understand how HL, as a complex concept, is a determinant of health outcomes [38,47] and which domains play a crucial role in this regard. Therefore, existing tools are thus inadequate in identifying 6  specific areas of improvement needed within the domains [36,39,47,48]. Another limitation of current tools is the challenge of differentiating between ‘health literacy’ and ‘basic literacy’, in that, the majority of these tools are not disease-specific measurement tools and often lack relevance to a specific chronic condition [39,49-51]. The limited scope of existing tools prohibits researchers and clinicians from identifying possible mechanisms and/or interventions needed to improve disease management (e.g., knowledge enhancement, skill improvement, and behaviour modification strategies) [52]. Ideally, there needs to be a single comprehensive measurement tool assessing all five domains of HL as well as numeracy in order to adequately assess HL, identify the specific gaps or areas of weaknesses between each of the domains, and determine where targeted interventions may be needed [38,46,47].    There are only a few reviews conducted on the deficiencies of HL measurement tools. For instance, in 2006, Kwan et al. [51] performed a comprehensive literature review to identify the gaps in existing HL measurement tools. Properties for each tool were compared and the strengths and limitations were clearly identified with the objective of developing a Canadian HL measurement tool to be used among older adults. The authors developed a conceptual framework for HL in addition to an English version of the tool and tested it with an older population group (65 years of age or older). Although this was a promising accomplishment, their tool was not disease-specific and was not validated by the same team or by other researchers. In 2011, a critical appraisal of HL by Jordan et al. [39] found wide variations of constructs and content across HL tools, and none of them appeared to fully measure a person’s ability to seek, understand, and use health information. The content of these tools were mainly focused on reading comprehension and numeracy, scoring categories were poorly defined, and very few tools had been assessed for reliability. More recently, in 2014, Haun et al. [53] undertook a systematic review of 51 HL measurement tools and showed that only a minority of tools assessed all of the defined dimensions of HL. 7  The review concluded that comprehensive validated measurement tools for diverse populations are needed.   To our knowledge, there is currently no evidence in the literature on HL measurement tools containing the CCHL’s 5-domain model and numeracy as related to asthma and chronic obstructive pulmonary disease (COPD) management. During the 2013 ‘Creating a Knowledge Hub in Health Literacy and Chronic Disease Management International Research Roundtable’ held at the University of British Columbia (UBC), Vancouver, Canada, a call for action regarding the development of a globally comparable and reliable population-based HL measurement tool for chronic disease management was stressed by participating scholars, clinicians, and policymakers [54]. To build on this call for action and further explore existing HL tools related to asthma and COPD management, I conducted a systematic review looking at tools that measured any of the five HL domains as well as numeracy domain using the following research questions:   How well do the items in the tools map onto the domains? o To what extent are the domains covered in the existing tools?  How many of the tools have been validated and out of the validated tools how well do they address key components (e.g., complete assessment of the five HL domains, a conceptual model/framework behind item development, and detailed descriptions of scoring and validation processes such as psychometric properties)? My hypothesis was that a majority of the identified tools will be heavily focused on the ‘understand’ domain as it is assumed that assessment of patient ‘knowledge’ is an easy and attractive concept for both researchers and health care professionals (HCPs) in comparison to assessing the other HL domains.  8  In this review, I report on important characteristics of identified tools such as the distribution of HL domains, underlying content, number of items, types of response options, scoring, readability, administration, as well as strengths and weaknesses. In addition, key components available for validated tools were reviewed and evaluated based on a checklist that was developed exclusively in this study.  2.2 Methods 2.2.1  Study inclusion criteria Development, use, and/or validation studies such as cross-sectional surveys, cohort studies, and randomized control trials (RCTs) of psychometric tools pertaining to any of the five HL domains and numeracy will be included. Table 2.1 includes the definitions for each of the domains. Studies needed to focus on adult asthma or COPD patients as diagnosed by a physician or respiratory therapist. Measurement tools can contain various formats such as open-ended, closed-ended (e.g., true/false, multiple choice), scenario/passage, puzzle or pictorial type items either self-administered, assisted through an interviewer, or electronic based. The term ‘health literacy’ was first used in 1974 during a discussion on health education as a policy issue affecting the health system [23]; therefore, the review will include the years 1974 to 2016. Only English language papers were included.  Qualitative studies or studies with measurement tools assessing the HL of health care providers, caregivers, or the general population were excluded. Consensus was also used to exclude inhaler technique checklists as these tools only measured the correct sequence of steps for the correct use of specific devices.    9  Table 2.1 Definitions and examples of health literacy (HL) domains Domain Definition/example Access Being able to navigate and find health information - it is more than the availability of information and services. It is mediated by education, culture and language, by the communication skills of professionals, by the nature of materials and messages, and by the settings in which health-related supports are provided – Canadian Expert Panel on Health Literacy (CEPHL) [29].  o e.g., I have the skills to FIND the health information I want.  Understand Knowledge about a subject or situation, and comprehension of the health condition and information – Cambridge Dictionaries [55]. o e.g., How confident do you feel you are able to follow the instructions on the label of your inhaler? Evaluate To be able to determine whether information/service is applicable to self - to judge or calculate the quality, importance, truthfulness, or value of information – Cambridge Dictionaries [56]. o e.g., I have the skills to JUDGE which health information can be trusted. Communicate To share information with others (doctor, caregiver, family members, etc.) by speaking, writing, and body language – Cambridge Dictionaries [57]. o e.g., I have the skills to DESCRIBE my health concerns to others. Use Adapting and applying information to daily life for disease management - to take, hold, or deploy information as a means of accomplishing or achieving health outcome – Oxford Dictionaries [58]. o e.g., I can use the information received from doctor/hospital to set my disease management goal. Health numeracy The degree to which individuals have the capacity to access, process, interpret, communicate, and act on numerical, quantitative, graphical, biostatistical, and probabilistic health information needed to make effective health decisions [30].  2.2.2 Search strategy To better understand the concept of HL prior to this systematic review, I examined studies from five [39,49,51,59,60] systematic reviews focusing on general HL measurement. The five reviews identified and evaluated generic HL tools assessing various domains such as reading comprehension, word recognition, and numeracy. This pilot stage enabled me to identify MeSH headings which were used to develop a preliminary search strategy. The search strategy included the search concepts: health literacy domains 10  (access OR understand OR evaluate OR communicate OR use OR numeracy) AND measurement AND chronic diseases (asthma OR COPD) AND 1974-2016 AND English. The search strategy is presented in Figure 2.1.  Figure 2.1 Health literacy (HL) search conceptualization  2.2.3 Data sources and selection The search was developed in MEDLINE (Ovid) by a librarian using the search strategy mentioned above. Embase (Ovid) was then searched using a refined search based on the included studies from MEDLINE. Details of the literature search are provided in Appendix A. The final search was performed in July 2016 and was limited to the years 1974 to 2016 and English language publications on HL tools. Reference lists of included studies for additional papers were handsearched as well as grey literature including unpublished reports and dissertations. The search was further supplemented with documents shared by the instrument development study advisory panel (AP) which consisted of national and international HL experts. Search results were imported into RefWorks and duplicates were removed before review.  11   The study selection process for both the titles and abstracts and full-text articles stages were pilot tested with myself and another reviewer. Another reviewer and I independently assessed titles and abstracts identified from the MEDLINE and Embase searches by applying the eligibility criteria during study selection. Any disagreements were resolved by a third reviewer. Full studies of included titles and abstracts were retrieved for further review and were again assessed independently by myself and another reviewer. The third reviewer resolved all disagreements again from the full-text articles review stage. The Cohen’s kappa for the full-text articles review stage was 0.83. Following, measurement tools of the included articles after full review were identified and sought for extraction. Tools that were not in the article or provided as supplements had to be handsearched through reference lists of papers. Authors of relevant studies were contacted to obtain missing data where appropriate.  2.2.4 Data extraction and synthesis Another reviewer and I independently extracted content from the included measurement tools and corresponding studies using standardized data extraction forms (one for mapping tool items to HL domains and one for development, use, and/or validation studies). The data extraction forms can be found in Appendix B. Information on tools and studies including general information such as author(s), title, year published, and country of origin; study characteristics such as study design and population; instrument details including HL domains, underlying content, purpose, number and type of categories, scale design, and scoring; and utility characteristics, for example, level of reading ability, and strengths and weaknesses were extracted. Disagreements on mapping of tool items to appropriate HL domains were resolved by a third reviewer. Inter-rater agreement was assessed between myself and the other 12  reviewer with 81.96% agreement on the total tools. The first five studies of three tools were pilot tested to ensure agreement and clarification between the reviewers before continuation.  The identified tools were first organized according to assessment of HL domains, disease, and then validation following data extraction. Each tool was reviewed in-depth to identify the distribution of domains, its content, and important characteristics. Due to too much heterogeneity of tools, the data is presented in a descriptive form. Validated tools were assessed using a checklist that was developed exclusively in this study to rate key components available for each tool. Key components included: (1) a conceptual model or framework behind item development; (2) complete assessment of all five HL domains; and (3) detailed descriptions of scoring and validation processes such as psychometric properties. The checklist for reporting key components of validated tools is provided in Appendix C.   2.3 Results A systematic review was undertaken, following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for reporting systematic reviews [61]. The MEDLINE (Ovid) search produced 1326 publications and the Embase (Ovid) search produced 1846 publications. In addition, eight reviews and 50 papers regarding HL measurement were shared by the study AP and added to the review. In total, 2860 articles were screened after removal of duplicates, from which 1775 articles were excluded after title and abstract review. Another 984 articles were excluded upon full-text review. Reasons for exclusion included: no measurement tool (n= 425), not assessing any of the HL domains (n=403), unrelated target populations (n=149), and tool not in English (n=7). Tools were then sought from the 101 articles included in the review which resulted in an addition of 13 studies found through references. Ultimately, the search yielded 65 measurement tools of which 40 were asthma-specific, 22 were COPD-specific, and 13  3 were asthma/COPD-specific. Figure 2.2 contains the PRISMA flow diagram of selected studies for this review.  Figure 2.2 PRISMA flow diagram of selected studies  2.3.1 Characteristics of measurement tools The content of identified tools was largely focused on disease physiology and etiology; identifying and controlling of triggers; recognition of symptoms and assessing symptom severity; and self-management 14  knowledge such as the use of medications, monitoring and recording of peak flow rate, and the ability to follow an action plan. Various measurement tools had been designed to collect data on the participation and perceptions of pulmonary rehabilitation programs among COPD patients as well as identifying and evaluating sources of education. The number of items ranged from 2 to 157 and types of response options and scaling varied between items in the identified tools including: true/false/not sure, yes/no, multiple choice, Likert-type scales, and open-ended responses. Readability was only reported in six [62-67] tools and varied from 5th -11th grade reading levels. In terms of administration, 30 [63,65,66,68-94] tools were self-administered; 14 [64,95-107] were interviewer-administered; and 21 [62,67,108-126] did not report on administration mode.  The following five [62,64,86,87,94] measurement tools are case examples of tools used to describe the spectrum of characteristics of included tools. These validated tools were selected for highlighting by reviewing the 65 tools for variation across different characteristics such as disease, underlying content, purpose, number of items, types of response options, scoring, and mode of administration. The Asthma General Knowledge Questionnaire for Adults with Asthma [62] is a 31 item tool developed for use in an RCT to assess the knowledge of asthma concepts (e.g., asthma attacks, medications, and triggers) in an education program. Questions are marked as either ‘true’, ‘false’, or ‘not sure’ with the total of correct answers indicating a knowledge score. Mode of administration for this tool was not reported. The Asthma Self-Management Questionnaire (ASMQ) [64] is another asthma-specific tool developed for the purpose of measuring patients’ general knowledge of asthma. Knowledge on preventive strategies, proper use of inhalers, differences between maintenance and rescue medications, and use of peak flow meters are assessed through 16 multiple choice questions with one point assigned to each correct response and a total score equaling the sum of all points. The tool was developed using information received from 15  patients participating in a trial on improving asthma-related quality of life. In the trial, patients were asked open-ended questions on how asthma affected their daily lives and what they did to manage their disease. Patients’ comments were used to formulate the items and corresponding response options, and the developed questions and response options were then reviewed again with patients for their feedback and modifications. The ASMQ is interviewer-administered. For COPD-specific tools, the Bristol COPD Knowledge Questionnaire (BCKQ) [87] has 65 items and contains topics on epidemiology and physiology; aetiology; common symptoms: breathlessness, phlegm (sputum); chest infections/exacerbations; exercise; smoking; vaccinations; inhaled bronchodilators and corticosteroids; antibiotic treatment; and steroid tablets. Questions are marked as either ‘true’, ‘false’, or ‘don’t know’ with a score being given for a correct answer and no scores for an incorrect answer or a ‘don’t know’ response. The tool is self-administered. The Lung Information Needs Questionnaire (LINQ) [86] is an alternative from COPD-specific knowledge questionnaires and was designed to measure ‘information needs’ from a patient’s perspective in terms of what the patient wants to know. The final LINQ has 17 items in six topics: disease knowledge; medicines; self-management; smoking; exercise; and diet. This questionnaire has an easy-to-use format and was designed with patient-centered wording to improve patient comprehension of the meaning of the questions [127]. Questions were developed through patient focus groups to establish information needs as perceived by patients themselves with wording of items and response options further reviewed again in supplementary focus groups. Five of the domain scores are calculated by the sum of item scores in each domain where ‘0’ indicates no information need and ‘1-3’ indicating a level of need. In the case of the smoking domain, non-smokers were given a domain score of ‘0’ and current smokers were given a domain score of the sum of the three smoking questions. The LINQ is self-administered. For asthma/COPD-specific tools, the European Health Literacy Survey Questionnaire (HLS-EU-Q) [94] has 88 items and was developed using a conceptual model of HL derived from a systematic literature review of 16  existing HL definitions and conceptualizations [60]. The core model consists of a 12 cell matrix with key processes of ‘accessing’, ‘understanding’, ‘appraising’, and ‘applying’ health-related information within three areas: healthcare; disease prevention; and health promotion. Item generation and face validity of the tool were tested in focus groups with the general population. Questions of the HLS-EU-Q are answered on a Likert-type scale ranging from ‘very easy’, ‘easy’, ‘difficult’ to ‘very difficult’. The tool is self-administered.  The characteristics of asthma-specific tools are presented in Table 2.2, COPD-specific tools in Table 2.3, and asthma/COPD-specific tools in Table 2.4.   17  Table 2.2 Characteristics of asthma measurement tools Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Asthma General Knowledge Questionnaire for Adults with Asthma [62]   Asthma physiology and aetiology; identification and control of triggers; recognition of symptoms and assessment of symptom severity; medications; lifestyle factors; psychosocial factors; inhaler and peak flow meter skills; and monitoring and recording of peak flow rate 31; True/False/Not sure SMOG formula estimated 5-6 years of schooling   Not reported The knowledge score was the total of correct answers The study findings suggest that the tool was a valid and reliable measure for assessing the asthma general knowledge of adults attending the asthma education program Not reported Understand 12-Item Consumer Asthma Knowledge Questionnaire (Cq) with a True/False Response [63] Asthma medication and asthma management knowledge; the tool was developed from the current National Asthma Council of Australia guidelines  12; True/False/Blank Flesch-Kincaid Grade Level Score of 8.1, indicating that an eighth grader (average age 13 years)  Self-administered One mark is allocated to each correct answer and 0 for each incorrect answer or each question that was left unanswered Simple and reliable instrument for assessment of asthma knowledge Not reported Understand 18  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Asthma Self-Management Questionnaire (ASMQ) [64]                  Knowledge of preventive strategies, proper use of inhalers, differences between maintenance and rescue medications and use of peak flow meters 16; multiple choice Flesch-Kincaid Grade Level Score of 6.8 Interviewer-administered One point is assigned to each correct response, and the raw score equals the sum of all points; (raw score/16) x 100 and ranges from 0 to 100 with a higher score indicating more knowledge of self-management The tool was shown to be valid, reliable, and responsive; also patient-derived The tool was developed in an urban primary care practice and may not reflect self-management issues of patients in other settings Understand 19  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Asthma Knowledge Questionnaire [68]           Based on the five knowledge areas recommended for patient education by the  National Asthma Education and Prevention Program 1997 guidelines: basic facts about asthma, the role of medications, skills, e.g., inhaler use, the role of environmental triggers and trigger avoidance, and when and how to take rescue actions 11; True/False Not reported Self-administered Scored as a percentage of correct responses  Not reported Not reported Understand Check your asthma "IQ" [108]       Awareness of issues related to asthma 12; True/False Not reported Not reported One point is assigned to each correct response  with a higher score indicating more knowledge of asthma Not reported Not reported Understand 20  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Asthma self-management knowledge questionnaire [65]                  (1) Asthma pathophysiology: the contrast between normal and asthmatic lungs; what happens to the airways in an asthma attack; common symptoms of asthma (cough, wheeze, chest tightness, and shortness of breath); (2) roles of medications: quick-relief medicines (albuterol); long-term control (preventive medicines) such as inhaled corticosteroids; (3) skills: inhaler/spacer/holding chamber/self-monitoring: inhaler use; spacer/holding chamber use; self-monitoring with peak flow meter; cleaning inhalers and knowing when 24; True/False Flesch-Kincaid Grade Level Score of 5.2   Self-administered  One point is assigned to each correct response  with a higher score indicating more knowledge of asthma Enhanced clinical utility Factor analysis suggested that there may be more than five content areas of knowledge needed for self-management Understand 21                        they are empty; (4) environmental control measures: dust mites; tobacco smoke; animal dander; cockroaches; mold/pollens; vacuum cleaning; (5) when and how to take rescue actions: how to know asthma is getting worse; managing an asthma attack; when to obtain help for acute asthma 22  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) The Knowledge, Attitude, and Self-Efficacy Asthma Questionnaire (KASE-AQ) [109]                 (a) The patient's attitude toward the illness, including his or her willingness to work with the physician to manage the disorder; (b) the patient's confidence in his or her ability to contribute to the management of the illness; and (c) the patients knowledge regarding the illness, which enables the patient to perform appropriate procedures to control particular symptoms 60: 20 items related to asthma knowledge, 20 items related to patient attitude, and 20 items related to patient self-efficacy; multiple choice Not reported Not reported A perfect score on the knowledge subscale of the KASE-AQ is 20; the maximum score a subject can attain on the attitude subscale is 100: the higher an individual's score, the more positive the individual's attitude regarding his or her asthma and the more the person is willing to work in cooperation with a physician to manage the illness; the maximum score a The KASE-AQ allows physicians and behavioral scientists to determine to what extent a patient's lack of knowledge, uncooperative attitude, or low self-efficacy may be contributing to difficulties the patient is experiencing in managing the asthma-difficulties that cannot be explained by other factors such as a respiratory infection, seasonal allergies, or a Not reported Access, Understand, Evaluate, Use 23                         subject can attain on the self efficacy subscale is 100: the higher an individual's score, the more confident the individual is about managing his or her asthma, avoiding asthma triggers, and controlling the disorder need for different or increased medication 24  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Asthma Numeracy Questionnaire (ANQ) [95] Developed from a series of potential survey items from common recommendations made to patients with moderate or severe asthma adapted from current national guidelines 4; Free text, multiple choice Not reported Interviewer-administered 1 if correct and 0 if incorrect It assess some of the most commonly used numerical concepts in asthma education and it can easily be used in clinical care or added to a clinical research protocol The questionnaire is brief and is not a comprehensive assessment of asthma numeracy               Numeracy 25  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Asthma Knowledge in Tertiary Care Asthmatics [96]                  Basic facts of asthma, role of medications, a track management skills through use of a written action plan 9; Yes/No/ Don’t know, Check (all) that apply Not reported Interviewer-administered One point is assigned to each correct answer, while incorrect or unsure responses were accorded a zero score. Knowledge statements were analyzed individually and as a summed score. The lowest and highest total scores possible were 0 and 6, respectively. Not reported Not reported  Access, Understand, Use 26  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Patient-Clinician Communication [97] Patient knowledge of the function of inhaled steroids and patient-clinician communication 6; Definitely true/ mostly true/ don't know/ most likely false/ and definitely false Not reported Interviewer-administered Questions were converted to a numerical metric with higher scores representing better communication for the patient-clinician communication questionnaire/ more knowledge for the function of inhaled steroids. The total score could range from 6 to 30.      It was the first validated instrument for assessing patient knowledge of the function of inhaled steroids and patient-clinician communication Not reported Access, Communicate, Use 27  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Hypothetical Asthma Attacks [98]                  Two scenarios: the first was an attack of increasing severity over 7 days (slow onset) while the second described an attack that developed over 1 h (rapid onset). Both scenarios ended with the subject "experiencing" a severe attack such that he/she was so wheezy and short of breath as to be unable to speak or rise from a chair. At three stages during each of the scenarios, subjects were asked to describe what action they would normally undertake if they were actually experiencing such symptoms. 16; open-ended Not reported Interviewer-administered  There was a 25-point scale on which 0 represented a total lack of appropriate responses and a score of 25 was an optimal response. Respiratory physicians associated with the study considered a score of 15 or greater would indicate a satisfactory level of asthma self-management knowledge. Subject responses were scored according to the appropriateness of actions taken relevant Scenarios may be a tool that can be used to assess the true efficacy of teaching, particularly in high-risk patients who are justifiably targeted in asthma education programs. There was excellent interrater and intrarater consistency in scenario response scores. Not reported Use 28                         to the stage of the attack, e.g., seeking medical advice was considered inappropriate in the initial stage of the attack and therefore did not score points, whereas at a later stage, when appropriate, it did. Scores were weighted for strategies considered most important in aborting an attack or to be potentially lifesaving. Negative scoring was not used. 29  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Asthma Knowledge and Self Management Behaviour [110]             Asthma physiology and severity, medications, and the use of a crisis management plan 11; 5-point Likert-type scale  Not reported Not reported Knowledge: scored as 0 for the three statements at the incorrect end of the scale to 2 and 4 for the options at the correct end; Self management behaviour: scored with a 5 point Likert-type scale. A high score indicated desired or appropriate behaviour. Not reported Not reported Understand, Use Use of MDIs in Hospital Environments [99] Degree of knowledge of MDIs (duration, the type and dosage and schedule of the MDIs and whether or not the instruction was provided) 34; Yes/No, open-ended, Check (all) that apply Not reported Interviewer-administered Not reported Not reported Not reported Access, Understand, Evaluate    30  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Asthma Behaviour Change (ABC) [69]                 The questionnaire covered two concepts: behaviour and knowledge. The behaviour component was constituted of seven different clinical situations in term of severity of asthma and the knowledge component was composed of two dimensions measuring knowledge of pathophysiology and of therapeutic areas. 45; Yes/No Not reported Self-administered One point for a right response, two for 'does not know', three for a wrong response and four for missing data. The right/wrong response could be 'yes' or 'no' depending on the item. Each dimension score was calculated by the sum of score item responses, then, the result was transformed to range from 1 to 100, with 0 being the best score and 100 the worst score.   It is a valid tool Not reported Understand, Evaluate, Use 31  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Allergy/Asthma Knowledge Assessment [70] Two methods were used to assess the participants' knowledge: the first was a 10-item true/false allergy/asthma quiz; the second was an allergy/asthma schema based evaluation in which participants were asked to write the name and the mechanism of action for each allergy/asthma medication they were taking 11; True/False, open-ended Not reported Self-administered First questionnaire for asthma knowledge was 10 items questionnaire with one point is assigned to each correct answer. Second one which was allergy/asthma schema: one point was given for all correct information (albuterol: reliever inhaler) and half a point was given for partially correct information (albuterol: controller inhaler).    Not reported Not reported Understand 32  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Are You an Asthma ACE? [71]    Asthma knowledge (general knowledge, knowledge of pathophysiology, disease management) 16; True/False Not reported Self-administered One point is assigned to each correct response   The survey instrument was a powerful educational tool, capable of sensitizing event participants to the issues that would be addressed in the lecture series Some questions were too basic (i.e., those in the general knowledge subgroup), those that were poorly covered or not covered during the one-night educational intervention, and those that appeared to have value in measuring the impact of the intervention Understand Clinician's Communication Behaviour [72] Examining what adult patients with asthma report about their experiences with their own self-management behavior and their experiences working with their clinicians to control asthma 8; Likert-type scale Not reported Self-administered Not reported Not reported Not reported Understand, Communicate 33  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Patient's Knowledge about Asthma Treatment [73]       Demographics, asthma medication, symptoms, allergy, emergency consultations, smoking habits, occupation, sick leave, and the patient’s knowledge about asthma treatment 22; multiple choice, open-ended Not reported Self-administered  The question about sufficient knowledge was scored: “yes, absolutely”, “yes, partially” and “no”  Not reported Not reported Access, Understand, Evaluate, Use Patient Knowledge of Asthma and its Treatment [111]         Pulmonary function and symptoms; eosinophil cationic protein as a marker of inflammatory activity in the airways; emergency visits; and patient knowledge of asthma and its treatment.     11; Yes/No Not reported Not reported Not reported Not reported Not reported Access, Understand 34  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Questionnaire for the Evaluation of Clinical Improvement and of the Degree of Knowledge [74] Pathophysiology of asthma; environmental control; triggering/irritating factors; treatment of asthma; inhalation technique with and without a spacer 22; Yes/No, multiple choice, Check (all) that apply, analogue scale from 0 to 10 Not reported Self-administered Not reported Not reported Instrument does not evaluate psychological aspects, health-related quality of life, cognitive aspects, or psychosocial behaviour Understand, Use Career Choice in Young Adults with Asthma [75]      Areas assessed included asthma management, symptom experience, career choices, and demographic and socioeconomic information 30; Yes/No, open-ended, Check (all) that apply, Likert-type scale Not reported Self-administered The occupation score was coded from 1 to 8, with a score of 1 corresponding to a highranked occupation (i.e., high executive or professional) and a score of 8 corresponding to a low-ranked occupation (i.e., unemployed or homemaker)  Assessment of asthma knowledge can be regarded as a best-case scenario for awareness of asthma as a factor in career choice. It is possible that awareness may be lower for less advantaged adolescents. Not reported Access, Understand 35  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Knowledge and Attitudes of Asthma [76]  Knowledge and attitudes towards asthma as a disease and its medications 15; Yes/No Not reported Self-administered “Do not know” answers were recorded as wrong answers yielding 0 points. Each correct answer yielded 1 point. The knowledge scores were calculated by summing up correct answers for disease-related statements (score range 0-7) and for medication-related statements (score range 0-8)      Practical oriented- short scale is easy to use in community pharmacy and it gives a rough information about patients’ attitudes towards the disease and the treatment to a pharmacist for monitoring the outcomes Not reported Understand, Use  36  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Patient Asthma Concerns Tool (PACT) [100]                  Items were grouped under the domains of: diagnosis, symptoms, management behaviour, medication adherence and barriers, practitioner care, patient knowledge, beliefs, and exacerbation concerns 14; Check (all) that apply, 5-point Likert-type scale, 4-point Likert-type scale, Yes/No, open-ended Not reported Interviewer-administered Not reported The PACT questionnaire provides a robust validated instrument, applicable and acceptable to general practitioners, with which to explore and define the unmet needs of older people with asthma. It is believed the use of the PACT in clinical care will facilitate tailored asthma management and education to improve current asthma management behaviours and outcomes in older Not reported Access, Use 37       people. Careful construction and testing of the instrument means that PACT is well validated in a group of older people with asthma drawn from community settings and is likely to be applicable to them.            38  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Knowledge about Asthma, Fasting, and Medication Use [112]  Sources of knowledge about asthma, fasting, and medication use 7; multiple choice, Check (all) that apply Not reported Not reported Not reported Not reported Not reported Access, Evaluate, Use Asthma Questionnaire [113] Designed to test how well the primary health care team had educated registered asthma patients or their guardians about all aspects of their condition 15; open-ended, Yes/No Not reported Not reported If a patient  answered no to all questions they were given a LOW morbidity, yes to one question they were classed as MEDIUM Not reported Not reported Access, Understand, Use Medical Interview Satisfaction Scale (MISS-21) [77]      Four subscales (communication comfort, distress relief, compliance intent, and rapport) 21; 7-point Likert-type scale Not reported Self-administered Not reported It is a valid and reliable instrument for the assessment of patient satisfaction with individual consultations in British general practice    Not reported Access, Understand, Evaluate, Communicate, Use 39  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Asthma Opinion Survey [114] Vulnerability, perceived quality of care, recognition and control 18; 5-point Likert-type scale Not reported Not reported Scores are computed for three factors by summing the items that loaded on that factor. The scoring for some items is reversed in computing the total score on the factor: items 5, 8, 11, and 17. Item content is appropriate for the general population of asthma patients and only takes a few minutes to respond to.  Not reported Access, Understand, Evaluate Physician's Participatory Decision-Making Style [78]       Patients’ rating of physicians' propensity to: 1) involve them in treatment decisions; 2) give them a sense of control over medical care; and 3) ask them to take some responsibility     3; 6-point Likert-type scale Not reported Self-administered Not reported Not reported Relies on patients’ reports Access 40  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Survey of Medicaid Recipients with Asthma [79]     Key components of asthma care including health assessments, medication use, exposure to tobacco smoke, patient education and comprehension, ability to self-manage based on changes in symptoms or peak flow readings, access to providers, availability of asthma-related equipment, and overall satisfaction with asthma care        41; Yes/No, Likert-type scale Not reported Self-administered Not reported Not reported Recall bias and respondents reporting what they believe is the “right” answer  Access, Understand, Communicate, Use 41  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Awareness of Asthma [115]                   Awareness of asthma 2; Yes/No Not reported Not reported If the answer was “yes” to one of the questions, the subjects were classified as being aware of asthma. Subjects who were not aware of having asthma, but who were diagnosed with asthma in this survey were classified as unaware asthmatics.       Not reported Not reported Access 42  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Perceived Access to Care [80]   Patients’ experience re reaching a practitioner by phone, accessing a clinic appointment or obtaining asthma medication  3; Yes/No Not reported Self-administered Not reported Not reported Not reported Access Medication and Inhaler Adherence Scale [81]    Adherence to medication use and inhaler use            12; Yes/No Not reported Self-administered On each item the “no” response indicated better adherence Scales detect impact of intervention designed to improve adherence; easy to use and can be completed in less than 5 minutes; no risk and little psychological discomfort involved       Not reported Use 43  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Asthma Therapy Assessment Questionnaire (ATAQ) [82] Individual’s self-reported severity of asthma symptoms, medication compliance barriers, deficiency in knowledge of asthma, and barriers to effective communication with his or her healthcare provider 24; Yes/No/Unsure Not reported Self-administered Responses were summed to produce scores Not reported Not reported Access, Evaluate, Communicate, Use Knowledge of the Asthma Disease [116]         Asthma knowledge 5; I agree/I disagree/I don’t know Not reported Not reported Not reported Not reported Not reported Understand 44  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Asthma Knowledge Questionnaire [101]               Etiology of asthma, pathophysiology, symptoms and assessment of severity, medication, prevention, natural history 28; Yes/No/Can’t say Not reported Interviewer-administered All responses marked as “yes” get 1 point except where “no” is the correct answer. All responses marked “no” or “can’t say” get 0 point. A final score was obtained by summing these scores. The maximum possible score was 28. The scores were expressed as percentage of the maximum possible score.   Not reported Not reported Understand, Evaluate 45  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Judgement Skills Scale [83]       Developed based on the Situational Judgment Test format; typical asthma self-management situations where the patient faces a problem, and a list of possible response actions by the patient is provided: (a) doctor-patient communication, (b) medicine usage, (c) information seeking, (d) trigger avoidance, (e) symptom recognition, and (f) exercise 18; hypothetical scenario situations and plausible courses of actions Not reported Self-administered Each response option has a score from 1 (most inadequate) to 4 (most adequate). The scores for the 19 scenarios should be summed up resulting in a minimum score of 19 and a maximum of 76. Tool assesses patient ability to use health knowledge according to the situation; assessing these skills, particularly in the context of chronic diseases, is important since self-management plays a key role in the daily care of a health condition. The use of the situational judgment test for the questionnaire has been recognized for successfully predicting individuals’ performance, and Not reported Understand, Evaluate, Communicate, Use 46  appropriate use of knowledge according to the situation. The use of a Delphi procedure to validate the adequacy of the response options from a medical point of view also reinforces the validity of the tool.           47  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Knowledge and Attitude Assessment [117] Questionnaire contains components to assess the knowledge and attitude of asthma patients towards their disease and treatment 14; Yes/No, 4-point Likert-type scale Not reported Not reported Not reported The opportunity to identify reasons for non adherence through a simple assessment will allow a tailored intervention to be planned for each patient Not reported Understand, Evaluate Patient-Physician Communication about Work-related Asthma [102]  Patient-physician communication about asthma associated with work 2; Yes/No Not reported Interviewer-administered  Not reported Not reported Not reported         Access, Communicate 48  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) 1600 REALISE ASIA Asthma Patient Survey Questionnaire [84]          Comparing asthma symptoms and indicators of acute exacerbations across guideline-defined control levels and treatment types, patients’ perceptions of asthma and attitudes toward asthma management, sources of information and asking what the term “well-controlled asthma” meant  157; Check (all) that apply, open-ended, Yes/No, Likert-type scale Not reported Self-administered Not reported Not reported Survey relied on patients’ responses to the online questionnaire. These responses could not be clinically verified, and some patients might have inaccurately recalled certain events. Respondents were patients who used social media and may not represent the cross-section of the asthmatic population.    Access, Understand, Evaluate, Communicate, Use 49             Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Knowledge, Attitude, and Practice (KAP) [118] Patient’s perceptions about the disease, their attitude towards it (its symptoms, causes and risk factors) and their practice of living with the disease  16; multiple choice, Check (all) that apply, Yes/No/Don’t know Not reported Not reported Not reported Not reported Not reported Understand, Evaluate, Use 50  Table 2.3 Characteristics of COPD measurement tools Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Practice assessment in COPD [85]         COPD management e.g., participation in pulmonary rehabilitation programs and current medication; and patient perceptions of symptoms, knowledge of disease and sources of education         18; The number and type of response options vary between items, e.g., frequency, Likert-type scale, select all that apply Not reported Self-administered Not reported  Not reported Not reported Access, Understand, Use 51  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) The Lung Information Needs Questionnaire (LINQ) [86] Domains: disease knowledge; medicines; self-management; smoking; exercise; diet 17;  The number and type of response options vary between items, e.g., 0,1,2,3, missing Not reported Self-administered Five of the domain scores: sum of scores in each domain where 0 = no information need and 1–3 indicates a level of need; Smoking domain: all patients who were nonsmokers were given a domain score of 0 irrespective of their response to the remaining two smoking questions; Current smokers were given a domain score that was the sum of the three smoking questions The LINQ assesses areas that may be of concern to patients; it is  a short questionnaire which is easy to use in a clinical context The LINQ does not cover all areas that may require educational focus for a particular patient, e.g., information need about sexuality is not covered Access, Understand, Use 52  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Bristol COPD Knowledge Questionnaire (BCKQ) [87] Epidemiology and physiology, aetiology, common symptoms, breathlessness, phlegm, chest infections, exercise, smoking, immunization, inhaled bronchodilators, antibiotics, oral steroids and inhaled steroids 65; True/False/Don’t know Not reported Self-administered Positive scoring was used with a mark being given for a correct answer, but no mark awarded for an incorrect answer or for a ‘don’t know’ response Easy to score, and therefore would be suitable for routine use in both clinical, and research situations;  the topics chosen for testing were those that a patient with COPD might reasonably be expected to have appropriate knowledge; ‘don’t know’ option identifies areas of lack of knowledge    Not reported Understand 53  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Understanding COPD Questionnaire (UCOPD) [66]       "About COPD": disease education, recognizing and managing exacerbations, medications; "managing symptoms of COPD": managing dyspnea, conserving energy, benefit of exercise, managing low mood and depression, managing anxiety and panic; "Accessing help and support": information on welfare and benefits, facilitates for ongoing exercise, information about support groups,  aids and appliances; "satisfaction with the education component of pulmonary rehabilitation": 24; Likert-type scale SMOG grade was 11.49,  reading age: 16/17 years Self-administered The scores of the domains and sections are calculated by summing the scores of the individual questions of that domain/section (minimum score of all domains/sections = 0; maximum scores: About COPD domain =70, managing symptom of COPD domain=70, accessing help and support domain =40, Section A=180 and section B which was satisfaction =50). The scores are The tool is valid and reliable. It has good feasibility as it is self-administered, requires no training and can be completed and scored in less than 10 minutes. The readability of the UCOPD questionnaire as assessed by the SMOG formula was higher than recommended Access, Understand 54  amount of practical information, content of education sessions, content of written materials, approachability of health professionals and accessibility of location               then converted to percentages. 55  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Batalla Test (BT) [88] It assesses patient's understanding of their illness 3; Yes/No, open-ended Not reported Self-administered Not reported Not reported Not reported Understand COPD Knowledge Questionnaire [119] medication use, management of dyspnea and exacerbations in COPD 15; multiple choice Not reported Not reported Not reported Not reported Not reported Understand COPD Knowledge Quiz [120] COPD knowledge 16; True/False Not reported Not reported Not reported Not reported Not reported Understand COPD Learning Questionnaire [121]     COPD pathophysiology and lifestyles, medications and rehabilitation, and oxygen therapy        20; multiple choice Not reported Not reported Scoring system (range 0 –20, higher score reflects greater knowledge) Not reported Not reported Understand 56  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) COPD Patients' Knowledge regarding Cardiopulmonary Resuscitation (CPR) [122]             Patients’ estimates of the probability of survival after CPR, the maximal length of time from collapse to CPR that allows a reasonable chance of survival and the potential for “normalization” of quality of life 12 months after CPR, understanding of CPR, type and frequency/month of exposure to media dealing with health-care, role of fictional TV shows, TV educational programs, specialized publications and websites, patients’ education, feelings about the reliability of fictional medical 11; multiple choice, Yes/No/Somehow, Check (all) that apply, Likert-type scale Not reported Not reported Not reported Not reported Not reported Access, Understand, Evaluate 57  shows and how they learned about the practice of CPR via the media                   58  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Pulmonary Disease Knowledge Test [123] Kknowledge of chronic respiratory illness, treatments, and self-management 20; True/False Not reported Not reported Not reported Not reported Not reported Understand COPD Awareness Questionnaire [89] Level of awareness of COPD 9; True/False, Yes/No, open-ended Not reported Self-administered Not reported Not reported Not reported Understand COPD Patient Knowledge [124] Disease process, symptom recognition, treatment, prevention, medications, and good health practices        14; True/False Not reported Not reported Not reported Not reported Not reported Understand 59  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Quality of Communication Questionnaire (QoC) [90]   General communication skills and communication about end-of-life care 19; 10-point Likert scale/Don’t know Not reported Self-administered A summary score was created by adding the scores for the individual items, dividing by the number of items answered by the patient and multiplying by 10 to provide a score ranging 0–100 The tool is a promising questionnaire on the QOC to evaluate patient's perceptions of the quality of end-of-life care communication Not reported Access, Understand, Communicate Assessment of Care for Chronic Conditions [91] Patient activation/involvement, delivery system design/decision support, goal setting/tailoring, problem solving/contextual, and follow up/coordination 20; 5-point Likert-type scale Not reported Self-administered Each item was scored on a 5-point scale ranging from 1 (no or never) to 5 (yes or always) It is a valid tool providing a brief, patient-reported assessment of the extent to which chronically ill patients report receiving care that is congruent with the chronic care model Not reported Access, Evaluate 60  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) CONOCEPOC Study Questionnaire [103]     Respiratory symptoms and diagnosis, knowledge of COPD, spirometry use and the perception of the severity of other chronic diseases, knowledge of the National COPD Strategy and the new Anti-Tobacco Law 34; Yes/No/Don’t know, Check (all) that apply, Likert-type scale  Not reported Interviewer-administered Not reported Not reported Self-reported responses Access, Understand, Evaluate Inhaled steroids in COPD patients’ specific Knowledge scale [125] COPD and inhaled steroids 10; True/False/Unsure Not reported Not reported Not reported Not reported Not reported Understand Barriers and Facilitators to End-of-Life Care Communication [104]     Barriers and facilitators for patient-physician communication about end-of-life care 18; Applies/Does not apply/Do not know Not reported Interviewer-administered Summary scores for barriers or facilitators, comprised of the total number of items endorsed Not reported Not reported Access, Understand, Evaluate, Communicate 61  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Seattle Obstructive Lung Disease Questionnaire (SOLDQ) [92]            3 dimensions of life quality: physical functioning, emotional functioning, and coping skills 29; Likert-type scale Not reported Self-administered Not reported Internal consistency and test-retest reliability, validity, and responsiveness to change during and after COPD exacerbation were found to be excellent. Others have found the SOLDQ to be a powerful predictor of both hospitalization and all-cause mortality in patients with obstructive lung disease.   Not reported Evaluate 62  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Quality of Communication Questionnaire (QoC) 2 [105] Physician-patient communication in general; overall satisfaction with healthcare; and physician comfort talking about dying 5; Likert-type scale Not reported Interviewer-administered Not reported The quality of communication questionnaire may be a useful tool for evaluating interventions to improve communication about end-of-life care and also has the advantage of being less resource intensive than expert evaluation of videotapes     Assesses only patients’ perspective on patient-physician communication Evaluate 63  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) COPD Self-Management Interview (COPD-SMI) [106]    Hypothetical scenarios based on stages of an evolving exacerbation, i.e., maintenance when well, early exacerbation and severe exacerbation 39; Yes/No Not reported Interviewer-administered Responses were scored separately for knowledge and actions (adherence) on a three-point scale (0–2) yielding a maximum possible score of 26 for both the Knowledge Score and the Action Score in each scenario. Higher scores implied better self-management for the 13 behaviours assessed.   Not reported Not reported Use 64  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Evaluation of Pictorial COPD Action Plan [126] Usual daily medication; what to do when the patient experiences symptoms of an exacerbation, and finally, what to do if it does not improve 31; open-ended Not reported Not reported Not reported The tool explores patients’ perceptions about our images and whether they portray what we want them to portray             Not reported Understand 65   Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Chronic Obstructive Pulmonary Disease Knowledge Questionnaire (COPD-Q) [67]  COPD knowledge 21; True/False/Not sure 5th grade reading level with an Flesch Reading Ease score of 74.7 Not reported COPD-Q total score was calculated by assigning a score of 1 for a correct response and 0 for either an incorrect or ‘‘not sure’’ response The COPD-Q underwent a field test where 10 volunteers confirmed the understanding and interpretation of each COPD-Q item. The COPD-Q is written at a fifth grade reading level which is consistent with recommended guidelines. The COPD-Q was found to have acceptable internal consistency and significantly high test–retest reliability.  The qualitative content validation process of the COPD-Q was subjective, leaving the classification of item importance to expert reviewers’ thoughts, opinions, and biases.   Understand 66  Table 2.4 Characteristics of asthma/COPD measurement tools Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) Health Literacy Screening Questions Assessment [107] Access, understanding, and self efficacy 3; 5-point Likert-type scale Not reported Interviewer-administered Scores were summed to yield a total score of 3-15; higher scores indicate better health literacy It was validated Not reported Access, Understand Medication Adherence Report Scale (MARS-5) [93]           Unintentional and intentional nonadherence 5; 5-point Likert-type scale Not reported Self-administered Scores are summed, and totals range from 5 to 25, with higher scores indicating higher self-reported adherence. Not reported Tool is inaccurate in identifying nonadherent users of inhalation medication in patients with COPD Use 67  Title and reference Topics covered Number of items and scales Readability Administration Scoring Strengths Weaknesses HL domain(s) European Health Literacy Survey Questionnaire (HLS-EU-Q) [94]          Access/obtain information relevant to health; understand information relevant to health; process/appraise information relevant to health; apply/use information relevant to health on the domains of healthcare, disease prevention, and health promotion 88; Likert-type scale/Don’t know, Yes/No/Don’t know Not reported Self-administered Not reported It is explicit build on a definition and a conceptual framework of health literacy. The tool is multi-dimensional in content and distinguishes health literacy from communication. It treats health literacy as a ‘latent construct’ and follows a principle of compatibility. It permits comparison in different populations and makes reference to public health rather than just The Delphi generated items mainly in the domains of healthcare and disease prevention and less in the domain of health promotion Access, Understand, Evaluate, Use 68  clinical use. Participants and external stakeholders crucial decisions were taken during the development process. 69  2.3.2 Mapping of tool items to HL domains Only two [77,84] out of the 65 measurement tools identified in this review assessed all five HL domains. The Medical Interview Satisfaction Scale (MISS-21) [77] is a modified and validated version of the MISS-29, a scale that was developed in the United States to assess patient satisfaction with individual doctor-patient consultations. The MISS-21 includes four subscales: ‘Distress Relief’, ‘Communication Comfort’, ‘Rapport’, and ‘Compliance Intent’ and asks the patient to indicate their level of agreement on a 7-point Likert-type scale. The tool has a total of 21 items of which 10 were found to be related to HL. Distribution of domains were fairly equal among the 10 items with two items for ‘access’, three for ‘understand’, two for ‘evaluate’, two for ‘communicate’, and one for ‘use’. The 2012 REcognise Asthma and LInk to Symptoms and Experience (REALISE) survey was revised to develop the 1600 REALISE ASIA Asthma Patient Survey Questionnaire [84], a non-validated online questionnaire-based survey assessing adult Asian subjects’ asthma symptoms, exacerbations and treatment types, their perceptions and attitudes toward asthma and asthma management, and access to and evaluation of sources of asthma information. Types of response options include yes/no, multiple choice, Likert-type scales, and open-ended responses. The tool is comprised of 157 items of which 58 items assessed HL domains. Thirty-two items assessed the ‘evaluate’ domain, seven on ‘access’, five on ‘understand’, four on ‘communicate’, and ten assessed ‘use’.   Overall, the ‘understand’ domain was found to be the most frequently assessed domain among the 65 tools, being captured in 49 [62-77,79,83,84-90,94,96,99,101,103,104,106-126] of them with 20 (9 asthma [62-65,68,70,71,108,116] and 11 COPD [67,87-89,119-121,123-126]) tools assessing only that domain. Eight [62-65,67,68,87,126] out of the 20 tools had been validated. Tools that only assessed the ‘understand’ domain were largely ‘knowledge’ questionnaires such as the Chronic Obstructive Pulmonary Disease Knowledge Questionnaire (COPD-Q) [67]; Inhaled steroids in COPD patients’ specific Knowledge 70  scale [125]; COPD Patient Knowledge [124]; Are You an Asthma ACE? [71]; and Check Your Asthma “I.Q.” [108]. The format and types of response options for these tools included true/false, yes/no, and multiple choice.   The second most assessed domain was the ‘access’ domain which was identified in 29 [66,73,75,77-80,82,84-86,90,91,94,96,97,99,100,102-104,107,109,111-115,122] tools and three [78,80,115] asthma tools assessed only that domain. None of the three tools had been validated. Tools that only assessed the ‘access’ domain asked questions on the barriers to accessing health information and services. The format and types of response options for these tools included yes/no and Likert-type scales.  The ‘use’ domain was assessed in 24 [69,73,74,76,77,79,81-86,93,94,96-98,100,106,109,110,112,113,118] tools, with four (2 asthma [81,98], 1 COPD [106], 1 asthma/COPD [93]) of them assessing only that domain. Three [81,93,106] out of the four tools had been validated. Tools that only assessed the ‘use’ domain were either scenario-type questions with an answer following a correct action (e.g., exacerbation onset and increasing medication/going to hospital) or medication adherence scales. The format and types of response options for these tools included yes/no, Likert-type scales, and open-ended responses.  The ‘evaluate’ domain was assessed in 20 [69,73,77,82-84,91,92,94,99,101,103-105,109,112,114,117,118,122] tools and two [92,105] COPD tools assessed only that domain. One [92] out of the two tools had been validated. Tools that only assessed the ‘evaluate’ domain asked questions on the ability to ‘judge’ or ‘decide’ upon a situation; for example, ability to judge how reliable or trustworthy a health source may be or deciding whether or not to follow instructions given a certain 71  context (e.g., when symptoms are worsening). Likert-type scales were used for both tools that only assessed the ‘evaluate’ domain.  The ability to ‘communicate’ was the least assessed domain from the CCHL’s 5-domain model, appearing in only 10 [72,77,79,82-84,90,97,102,104] out of the 65 tools. None of the 10 tools assessed only that domain. Tools that assessed the ‘communicate’ domain asked questions on experiences in communicating with a health care provider (e.g., doctor). The format and types of response options for these tools included true/false/not sure, yes/no, multiple choice, Likert-type scales, and open-ended responses.  Lastly, the ‘numeracy’ domain was applied in two tools: the Asthma Numeracy Questionnaire (ANQ) [95] and the HLS-EU-Q [94]. The ANQ assessed only ‘numeracy’ and examines understanding of numerical concepts such as instructions for self-management of asthma (e.g., peak flow readings and medication dosage). This tool has been validated. The format and types of response options for the ANQ included multiple choice and open-ended responses.  Figure 2.3 depicts a visual summary of the 65 measurement tools by the distribution of HL domains and disease. 72  Figure 2.3 Visual summary of 65 measurement tools by HL domains and disease  2.3.3 Reporting key components of validated tools Thirty [62-69,76,77,81,83,86,87,90-95,97,99-101,106,107,110,115,118,126] out of the 65 tools identified in this review had been validated. A checklist for reporting key components of validated tools was developed by the study team based on factors that were considered important in the context of developing a comprehensive HL measurement tool. Validated tools were reviewed across components including: (1) application of a conceptual model/framework behind item development; (2) assessment of all five HL domains; and (3) detailed description of the scoring and validation processes (e.g., psychometric properties). Full and half points were assigned to each component (a total score of 3) depending on the availability and comprehensiveness. The MISS-21 [77] was the only tool that received a total score of 3. Eighteen [63,64,66-69,76,77,83,86,87,90,92,95,100,107,110,115] tools received a total score of 2 or more with the remaining 12 [62,65,81,91,93,94,97,99,101,106,118,126] fulfilling only one out of the three criteria. Among the 30 tools, 24 [63-69,76,77,83,86,87,90,92,94,95,99-101,107,110,115,118,126] of them 73  had been developed based off a conceptual model/framework and only the MISS-21 assessed all five HL domains. All 30 tools provided detailed descriptions of scoring and validation procedures.  2.4 Discussion  This systematic review presents a comprehensive current review of HL measurement tools for asthma and COPD. On top of only assessing one or two HL domains, existing tools primarily focus on the ability of patients to comprehend and transmit health information and disregard the fact that this process requires at least two individuals co-constructing meaning when communicating [128,129]. It is important to understand that HL is more than a one-way street and that each of the domains requires the other individual in the equation: the health care provider.      In this review, I highlighted the paucity of literature in existing tools that assess a person’s ability to communicate health information. Only 10 [72,77,79,82-84,90,97,102,104] out of the 65 tools were found to assess the ‘communicate’ domain (a total of 19 items). A potential reason for this could be because the review and search were based on print based tools whereas communication can also comprise of oral interactions. Moreover, communication is a complex phenomenon, potentially bridging written, visual, verbal, emotive, and auditory competencies, which make such contextually mediated interactions difficult to measure in the context of written materials. One technique used to measure communication in the context of HL is the ‘teach-back’ method [130] which is a technique health care providers use to assess whether a patient has understood important points covered in an education session. The ‘teach-back’ method works to enhance communication between the health care provider and patient, and requires the person receiving the health information to restate what they just learned in their own words. Another mode of assessing communication is through open-ended responses; however, these types of questions 74  are often difficult to score and focuses too narrow on print and writing ability. Regardless, open-ended responses may offer more insights into the issues that are challenging a patient by allowing them to provide information as to why they have chosen a specific response [131]. Additionally, some of the identified tools were designed before the advent of the broader CCHL definition. Previous definitions had less emphasis on communication as a separate entity [27,28,132], possibly contributing to a bias towards understanding/content based items, which are more in keeping with the traditional HL definition. As a result, it came as no surprise that only two out of the 65 tools assessed all five HL domains. Consequently, the ‘understand’ domain was not un-expectedly the most frequently assessed domain found among the tools identified. The dominant focus on measuring understanding also confirmed my a priori assumption that measuring patient ‘knowledge’ was a common and attractive concept for both researchers and health care professionals in the field as compared to measuring the other HL domains.  The definition of HL has been dynamic over time and has evolved to include the five aforementioned domains. A new ‘all inclusive’ definition of HL was derived upon content analysis of 17 explicit definitions found in a systematic review on HL definitions and conceptual models conducted by Sørensen et al. [60]. One common attribute among the 17 definitions was the emphasis and focus on individual skills in accessing and understanding health information necessary to make appropriate decisions. During data extraction, agreement between reviewers in assigning HL domains to tool items was ensured via the methodology outlined above. Irrespective, it was frequently difficult to assign single, discreet HL domains to assessment items, as it is an inherently subjective process. In addition to a lack of clarity in respect to the domain being assessed in the item, many skills appeared to assess multiple domains simultaneously, making it difficult to assign a single unifying domain. This limitation was also mentioned by Haun and colleagues [53] in their descriptive summary of 51 HL measurement tools. The authors found that it was 75  difficult to place distinct parameters on the definition of HL, making it a challenge in determining what should or shouldn’t be accepted as a HL tool. As such, significant gaps remain in the evaluation of HL tools due to the broad definition suggested by different researchers and organizations.  In regard to measurement tool characteristics, only a minority of tools reported on readability. Neither of the two [77,84] tools that assessed all five HL domains reported on readability. Multiple governing bodies have recommended a readability no higher than a 6th-8th grade education reading level [27,133], with the majority of reported readability complying with this. However, this finding is potentially biased by groups reporting readability being more likely to have designed tools with these constraints in mind. While it was not within the scope of this systematic review to assay unreported reading levels, this could potentially be a point of further investigation. Moreover, both [77,84] tools did not report on the time needed to administer the questionnaire. O’Neill et al. [134] showed in their systematic overview of self-administered HL tools that less than half of the identified tools reported on the administration times which ranged from two to 70 minutes. It is important to note that interviewer-administered tools requiring more than 20 minutes to complete (despite being reliable, valid, and assessing all five HL domains) may be of limited value as they would be unacceptable in a clinical setting. Lastly, another important characteristic to consider is the concept of ‘digital literacy’ which is defined as a set of skills required in using digital technologies such as computers, tablets, and smartphones [135]. Existing HL tools could potentially be adapted to include the concept of digital literacy, for example, in the case of evaluating new technologies such as telehealth (e.g., application of telephone calls/short message service (SMS) in delivering education services or consultation). Although this is potentially an exciting new frontier, its assessment is beyond the scope of this thesis.  76  Finally, I found that less than half of the tools in this review had been validated and a little more than half of those tools had been developed based off a conceptual model/framework, assessed all five HL domains, and/or provided detailed descriptions on scoring and validation procedures. This finding was contrary to the three reviews led by Haun et al. [53], Altin et al. [136], and Kwan et al. [51] which identified a number of HL measurement tools validated by exploratory and confirmatory factor analysis, and the key types of validity such as content, construct, criterion, internal, and predictive validity. One reason for this could be due to the fact that this review focused on asthma- and COPD- specific HL tools, and also due to the inclusion of all five domains and numeracy in the search. By not limiting the search to the term ‘health literacy’ only, I was able to capture a wider range of HL measurement tools for asthma and COPD management.   2.5 Conclusions  There has been recent recognition that chronic disease management, which is currently the preferred strategy for addressing increasing rates of chronic diseases, can be improved through increasing the HL skills of patients as well as the communication skills of physicians and other HCPs [137]. A call to embrace the importance of HL in the context of chronic respiratory disease management has thus occurred in parallel with increased awareness of the importance of comprehensively measuring HL due to the fact that existing measurement tools do not optimally help researchers and clinicians identify the issues or important gaps of each domain. In conclusion, a number of HL tools related to asthma and COPD management have been developed but only two out of the 65 tools identified in this review captured the CCHL’s 5-domain model of which one had been validated. The combination of domains was variable with more than half of the tools assessing the ‘understand’ domain and a limited number assessing the ‘communicate’ domain. In addition, less than half of the tools identified in this review had been validated. 77  A comprehensive and validated HL tool would therefore potentially be able to assist researchers and clinicians in measuring patients’ HL as well as identify areas and skills where more work is needed for improvement. Such a measurement tool will likely lead to improvements in health outcomes and quality of life for patients with chronic respiratory disease and has the potential to be adapted for other chronic conditions.     78  Chapter 3: Bridging the gap: Key informants’ perspectives on the barriers and solutions for chronic respiratory disease management  3.1  Introduction The management of chronic diseases has shifted in recent times from the traditional provider-patient concept to a model in which patients play a more active role in their care in partnership with their health care providers [138]. Self-management describes the tasks that individuals must perform daily in living with their chronic condition. These tasks include medical management (e.g., medication adherence), lifestyle management (e.g., being able to recognize and manage symptoms/triggers), and psychological management (e.g., coping with emotions) [19-22]. Despite the recognition of the importance of disease management in maintaining chronic conditions, a majority of chronic respiratory disease patients, such as asthma and chronic obstructive pulmonary disease (COPD) patients, are not successfully involved in self-management practices as a result of socio-environmental and systemic factors, along with the lack of support from their care providers [139]. Other reasons for not following self-management practices also include forgetfulness, lack of perceived symptoms and benefits, fear of adverse effects, and nuisance or difficulty [140-142]. Although there is evidence of patients’ willingness to become more involved in self-management [143], proper education and guidance from health care professionals (HCPs) are seldom offered and patients’ understanding of their disease remains poor [144,145].   In order to effectively implement strategies directed at improving self-management practices, it is important to first become aware of the potential barriers that patients may be facing during self-management and gain insights into the current approaches/techniques that are used by HCPs. Globally, many studies have been conducted to investigate the perspectives of chronic respiratory disease patients 79  re their barriers and facilitators to involve in self-management practices [146-149]. However, there are only a few publications focusing on the elicitation of HCPs’ views and perspectives of these patient barriers and the potential actions that can be taken in regard to such challenges [150-152]. In 2013, Roberts et al. [151] conducted a study among HCPs (consultants, general practitioners, specialists, and nurses) to investigate the barriers influencing self-management among asthma and COPD patients and found that lack of time during consultations and lack of resources (e.g., training and staff) were cited by many of the HCPs. Patient factors mentioned by HCPs included understanding such as literacy, cognition, and language barriers. Hillebregt et al. [150] also conducted a mixed methods exploration with COPD patients and their HCPs (respirologists, respiratory nurse specialists, general practitioners, nurse practitioners, and practice nurses) and highlighted organization of health care and consultation structure (e.g., consistency and collaboration between general practitioner and respirologist), engagement of patients in decision making, and patient-centered communication (e.g., not knowing how to communicate on the same level or connecting with patients) as issues relevant to effective self-management. Specific solutions to combat these issues and barriers were not examined in either studies.   Due to the lack of research eliciting HCPs’ perspectives on patient barriers and solutions for self-management, I conducted a qualitative study on data obtained from the ‘Development and validation of Canadian health literacy measurement tool for chronic disease management’ grant with two main objectives in mind:  To assess key informants’ (HCPs, researchers, and policymakers) viewpoints and thoughts on the major barriers that they perceived an asthma or COPD patient may be faced with in terms of self-management  80   To identify any actions or solutions that the key informants have applied in clinical practice to overcome and address these challenges.    3.2 Methods 3.2.1 Study sample and recruitment In-depth interviews were conducted with 45 key informants from Canada, the United States of America, the United Kingdom, and Australia between December 2015 and April 2016. The study participants included HCPs such as educators (e.g., respiratory educators, physiotherapists, and nurses) and clinicians (e.g., general practitioners, pharmacists, and respirologists); researchers; and policymakers involved in the care of patients with asthma and/or COPD and were recruited with the assistance from an advisory panel (AP) originally convened as part of a larger health literacy (HL) study. The key informants were introduced by the AP and were contacted by the project manager of the study through e-mail or by telephone for initial consent to be interviewed. Purposeful sampling was applied to ensure for maximum variation on key characteristics such as gender, profession, and geographic location. The intended sample size was a minimum of 24-30 key informants with an anticipation that the final number of interviews would vary depending on when theoretical saturation occurred (i.e., new themes ceased to develop).  3.2.2 Interview guide and data collection A semi-structured interview guide was developed by the study team with further input and suggestions from the research collaborators and AP. The interview questions were primarily focused on identifying participants’ perspectives and viewpoints on skills and abilities an asthma/COPD patient would need in to successfully manage their disease; barriers inhibiting successful management practices; challenges faced by both patients and key informants in terms of patient understanding and using health information; and 81  the possible actions or solutions that have been taken to address the mentioned challenges. The interview guide that was developed for HCPs slightly differed from the interview guide developed for researchers and policymakers with an addition of four questions being asked from the researchers and policymakers. The specifics of these additional questions were on existing HL measurement tools and the development of a HL tool for asthma/COPD management, which were not analyzed in this study. A copy of the interview guide (HCPs and researchers/policymakers) can be found in Appendix D. The interview guide was pilot tested with 13 key informants for relevancy and appropriateness, and necessary modifications were applied before conducting the key informant interviews. An interview protocol was established prior to data collection to ensure consistency in conducting the interviews by the research team and evenness between the interviews as best as possible. The participants were interviewed in the English language by the project manager and myself and/or another research assistant either in-person, via telephone, or via Skype. Written or verbal consent was obtained before conduction of each interview. All interviews were digitally recorded and lasted approximately 30-45 minutes. The interviewers and I took notes during all interviews and these observations were reviewed together as a team at the end of each interview for reflection and debrief. The interview tapes were transcribed verbatim by a professional transcriptionist and myself, followed by a review for accuracy by two individual team members (project manager, research assistant or myself). The key informants did not receive any honorarium for completion of the interviews.   3.2.3 Data analysis The 45 interviews were imported into the NVivo software (QSR International, version 10) for data management and analysis. To become familiar with the content before independently coding the raw data, I read and re-read the transcribed data several times before applying open coding and identifying text related to the two objectives of this study: (1) What do key informants (HCPs, researchers, and 82  policymakers) perceive as barriers or problems that patients are experiencing in terms of self-management?, and (2) What are some possible solutions that they suggest to address these issues? The analysis [153] was conducted by combining together different codes that were similar within the data to form a theme. Refinement of themes consisted of reviewing the coded data to ensure a coherent pattern and then considering the themes in relation to the entire data set. Transcripts were read again and further coding was conducted to ensure that no codes were missed in the earlier stages. Next, the themes were defined and named, and a detailed analysis was written for each individual theme. This was done by considering the ‘story’ within each individual theme as well as considering how it fit into the broader overall ‘story’ within the data [153]. Subthemes were also identified and vivid examples from the transcripts were extracted to illustrate the essence of the themes.  3.3 Results In total, 45 male and female participants were interviewed from a list of 60 key informants initially contacted. Six key informants declined participation due to time conflicts, another six experts believed that their comments would not be helpful as they were not involved in the care of asthma or COPD patients, and three did not respond to the initial contact. Details and key characteristics of the 45 participants are provided in Table 3.1.       83                 The thematic analysis process resulted in a total of three key themes including ‘What asthma and COPD patients should know about their disease’, ‘Perceived barriers to competent self-management’, and ‘Possible solutions and evaluation’ constituting the 13 subthemes: ‘Information overload’, ‘Inconsistent information received from HCPs’, ‘Time constraints’, ‘Medical jargon and reading level of materials’, ‘Beliefs and attitudes about treatment’, ‘Lack of patient involvement in developing educational materials’, ‘Memory problems and age’, ‘Take-home materials’, ‘Tailoring education’, ‘Follow-up visits’, ‘Promotion of questions’, ‘Better communication of HCPs and building relationships’, and ‘Teach-back method’.   Table 3.1 Participants' descriptive details (n=45)  N (%) Gender    Female 30 (67)    Male 15 (33) Profession Health care professional 28 (62)    Educator (e.g., respiratory educator, physiotherapist, nurse) 16 (36)    Clinician (e.g., general practitioner, pharmacist, respirologist) 12 (27) Researcher 14 (31) Policymaker 3 (7) Geographic location    Canada 40 (89)    The United States of America  3 (7)    The United Kingdom 1 (2)    Australia 1 (2) 84  3.3.1 What asthma and COPD patients should know about their disease? The participants described topics and areas that they felt asthma and COPD patients should know about their disease. Table 3.2 presents a list of the knowledge gaps mentioned as a potential barriers to self-management.  Table 3.2 What asthma and COPD patients should know about their disease General information  The basic definitions of their disease (e.g., what is happening in their lungs)  What caused their health condition  Why they may need to do a breathing test and how the test relates to their lung disease Disease worsening and seeking care  How to recognize signs of an exacerbation or worsening   The necessity of following an action plan for self-management  The steps to take during an attack or worsening: breathing techniques, bronchodilator use, antibiotics and prednisone use  When to obtain help (e.g., calling the doctor, 911, or going to the emergency department) Medication use  The importance of taking medications (e.g., the need in following through with treatment as prescribed by health care provider)   The reasons behind the use of such medications  What each inhaler does in terms of their lung disease and how and when to use it Lifestyle choices  Smoking, exercise, diet, and vaccinations are all factors influencing their lung disease  The different types of exercises they can do to improve their breathing, the need for a balanced and healthy diet, and the importance of acquiring vaccinations for flu and pneumonia prevention  Smoking and other environmental issues contribute to the decline in their disease  85  3.3.2 Perceived barriers to competent self-management 3.3.2.1 Information overload The quantity of information provided to patients from HCPs might contribute to treatment burden and overload for patients, was identified by the study participants as one of the most significant barriers to self-management. It was stated that patients are often overwhelmed with the amount or density of information that they are given and thus may struggle with achieving full comprehension of the material. As quoted by one of the educators [06/female] in the study: “… there is too much of information at once … [consequently] they shut down, so we give them more stuff to do, they just don’t bother, they just break down because there’s too much treatment burden.” Moreover, it was mentioned that patients who are very ill or experiencing shortness of breath are generally only thinking about how they are going to breathe comfortably in the moment and therefore, may not even bother listening to or applying the information into their self-management practices.  3.3.2.2 Inconsistent information received from HCPs Another barrier reported by the participants was that patients are commonly given different information by different people, resulting in confusion about the accuracy of information, and this was an issue raised by an educator [01/female]: “patients are told one thing at the pharmacy or at their family doctor’s and then told something different at the respirology clinic.” The unique example given by the educator [01/female] was in relation to the recommendation of using a holding chamber while inhaling from the metered-dose inhalers (MDIs): “when I teach someone how to use an [MDI], I always recommend that they use this um (sic) holding device called a spacer or air chamber; well the patient was saying to me the family doctor told me that’s for, little kids not for adults.”  86  3.3.2.3 Time constraints The study participants also mentioned perceived lack of time in clinical encounters to be a barrier to self-management. A clinician [10/female] said: “we have to make a special effort to talk [the patient’s] lingo and ask them if they have understood and then try to explain in the terms that they will understand, you know.  So it's time consuming.  So that's why it's not done.” Insufficient time was stated as a barrier for both patient and professional due to the difficulty in harmonizing ‘what patients wanted to know’ with ‘what HCPs needed to tell them’. Furthermore, time constraints were raised as barriers impeding clinicians’ assessment of patient understanding which subsequently prevented them from being able to provide useful feedback.  3.3.2.4 Medical jargon and reading level of materials One of the biggest barriers cited by the study participants was the use of medical jargon, either presented verbally or in written form during clinical encounters or provided as supplemental education aids. The participants mentioned that while the expected reading level for materials are supposed to be at a Grade 5 level, they found that this was generally not the case in their experience. Interestingly, a clinician [10/female] stated: “it's – we are the barrier because we don’t make it available which is understood by lay people.” However, another clinician [15/male] agreed with the principle but believed that overly simplifying information would result in loss of its purpose: “so there is always this push to be you know, more present to level of the sort of lay person … the reality is that sometimes that’s done to the point where you actually lose the key information, it’s something that cannot be over simplified- it cannot be simplified to that point.”  87  3.3.2.5 Beliefs and attitudes about treatment Patients’ beliefs and attitudes about treatment regimen prescribed for their chronic disease were described as a barrier to self-management. An educator [01/female] stated that patients’ beliefs about the effectiveness of therapy are reasons for not using the given health information: “… so, they [patient] may have these preconceived ideas it’s not going to work so then they don’t follow the advice that they are given and so they don’t give it a suitable enough length of time to try the therapy that the physician might want them to be on.” The difficulty of changing such beliefs and attitudes was also mentioned by another educator [04/female]: “[patient] doesn't think they [inhaler] work … so I explain it to him, I gave him a spacer. He’s still not using it because he can’t feel the medicine if he does that. He likes to feel it in his mouth to think he’s getting it. I don't know how you change something like that but he’s certainly not an isolated case.” Additionally, the fear of becoming addicted to inhalers was mentioned as a common belief for reasons to not use medication.  3.3.2.6 Lack of patient involvement in developing educational materials The participants reported an excess of health information and material designed solely by HCPs with none or minimal involvement of the people being served. It was mentioned that a co-operative effort was needed for the development of health information, as stated by a policymaker [03/female]: “find out what they [patients] want to know instead of what health care professionals think they need to know.”  3.3.2.7 Memory problems and age Another barrier cited by the participants was the difficulty in remembering and retaining information (e.g., forgetfulness or cognitive deficits) and this was indicated as a barrier mainly for COPD patients due to their age group. The study participants reported that older patients, specifically patients with dementia 88  or cognitive deficits, generally have difficulty comprehending new information that is given. This was mentioned by an educator [01/female]: “as people get older, as people age, you know issues with dementia right, that impacts their health because … they can’t remember what they’re supposed to be taking, when they’re supposed to be taking and that also makes it more difficult for them … if they don’t remember.” In addition, age was also noted as a fundamental challenge to changing behaviour and long-term habits that have been embedded in older patients’ lifestyle and routine activities for many years.  The difficulty for older patients to form new habits was described by an educator [41/female]: “… the ability to think that they can make changes, I guess that’s another part of ageing, is that it’s difficult for them, ‘I’ve done this all my life – I can’t change now,’ that kind of barrier.”  Additional quotes in relation to ‘Perceived barriers to competent self-management’ are illustrated in Table 3.3. 89  Table 3.3 Quotes on perceived barriers to competent self-management  Information overload “Sometimes that information overload if they [patient] come to see a respirologist, they’ve had a long day where they’ve done testing and they’re tired and then they have to see me and talk to me and then see their doctor and we have to make new changes and I’ll see them again and they’re maybe kind of maxed out on information by the end of the day so again you're not retaining a lot.” – educator [05/female]  Inconsistent information received from HCPs “And when I say it, ‘oh that’s not right’, ‘well that’s how the doctor or that’s how the pharmacist showed me’ and they [patient] trust that person more than me because they’ve only seen me once.” – educator [04/female]  “I guess if the information makes sense is one thing and if it comes from different sources. If I’m telling them [patient] one thing and they can see on the Internet that it’s saying pretty much the same thing and their doctor is saying something similar so that there’s I guess consistency in the information that they’re getting.” – educator [41/female]  Time constraints “Because it’s hard to you know, have maybe anywhere from 15 to maybe 30 minutes with the patients, and often times they are going to come with their own idea of what they want to understand, but I also have to work with them on what the doctors want me to teach them and what to understand.” – educator [19/female]  “I think time is the biggest factor, because as soon as you start, as soon as you start educating, you know sometimes you can have some sort of little topic that you want to ascertain on, it turns into an hour conversation right, because they have a lot of, the patient has a lot of questions about that or whatever, so again even providing that education, you can’t just say yes I provided the education, it’s like did they really understand right, and that takes time which the physicians certainly don’t have, and yes so I think it gets lost a little bit.” – educator [45/female]  90  Medical jargon and reading level of materials “… A lot of our materials, I mean they are supposed to be at a grade 5 level. I’m not convinced that they always are so if we provide those with patients, I don’t always think that they’re actually being read or that information, they’re comprehending that information, retaining that information or using that information.” – educator [05/female]  “Oh yeah, well the basic barriers are that health related stuff tends to be presented in an overly complicated way.” – clinician [15/male]  “I have heard of patients who are quite well educated, and this one person actually works in health care says that ‘you know, I want health care professionals to stop using acronyms’ when they describe their care.” – researcher [35/male]  Beliefs and attitudes about treatment “… They're [patient] able to understand the instructions and they can afford the medication but they’re afraid of side effects and only will take it intermittently.  And then they go through all of it, the medication works, they get better, and they decide because they're better they should stop, or they get better and they think that the benefits will wear off after time and they stop it, and then have a statement about side effects and about using medication and being labelled as having asthma or chronic disease that they don't want.” – clinician [32/male]  “I know for a fact that there are lots of people who don’t like taking the puffer because they are afraid of being addicted being to a puffer for the rest of their lives.” – educator [42/male]  Lack of patient involvement in developing educational materials “Involve them from the start. If you are planning to have a program for them, or a brochure for them specifically, it has to be culturally sensitive, language sensitive to their level, accessible, would not cost them anything, make it available, as free as possible, but involve them from the start, or involve any of the educators or relatives just so they own it.” – policymaker [36/female]  “I guess, if it was written, developed in collaboration with the patients, these days we talk about including patients in developing the materials so if there was a patient voice in the development of the materials, I think that would make sense to the other patients who are using it and hopefully they will use that information and can see the outcomes.” – educator [16/female]       91  Memory problems and age “… You know we’ve had people who have memory issues like I, I have one patient in particular who I see her pretty much every time she comes to the clinic because she can’t remember what I told her, yeah and so like you teach them how to use their inhaler and they go home and they don’t remember.” – educator [01/female]  “So when we have older patients specifically patients with dementia or with cognitive issues, they may not comprehend the information because the information we are providing at this time of life may be all new to them.” – educator [16/female]  “I think it’s more difficult to make behavioural changes, lifestyle changes, especially when you are in your 70s and 80s, and it’s just the fact that even if they are doing well when they are sick, it’s that much harder to get back into it.” – educator [41/female] 92  3.3.3 Possible solutions and evaluation 3.3.3.1 Take-home materials Providing patients with relevant information (e.g., pamphlets, handouts, and videos) which has been developed in plain language to take home after an education session was highlighted as a possible solution to address perceived self-management barriers. A clinician [11/female] described the importance of providing written materials and reinforcing this information at future visits: “… you know ideally every patient diagnosed with a condition on day 1 would receive that written information, and that written information would be reinforced at every visit.” Another clinician [33/male] suggested the application of videos to aid patient understanding:  “… that might help because that doesn't – that may not require reading … And for many patients that might be a better way to convey the information. And the other advantage is that if there is something they have to hear twice or three times, they can rewind the video and go back to it and hear it two or three times until they understand it.”  3.3.3.1 Tailoring education The participants stated that delivering health information that relates to how the patient is feeling and what is happening in their everyday life would better help them apply this information in practice. It was noted that education should be personalized and that people would be willing to change their behaviour when they see a benefit to it. When describing ways to make information more personal, a clinician [10/female] quoted: “making it personal using their own example or their own health status or their own risk factors, or their own events that happened to them and implying that health information then it becomes more personal. It's their story and not somebody else, something happens to somewhere else.”   93  3.3.3.1 Follow-up visits The participants stated that information for patients who only come to the hospital once or twice is usually crammed into a session. As a result, follow-up visits were reported as a possible solution to combat the time restraints, and burden of information in a single appointment. Furthermore, follow-up visits and calls were described as incentives for patients to continue their self-management practices, as stated by an educator [7/female]: “… if they [patient] know that we’re going to be checking in on them, there might be hopefully a more of an incentive to continue with the exercises or the deep breathing techniques that are taught … If they knew that was it, nobody was ever going to check in with them again, I think that a majority of people would just not do it.”  3.3.3.1 Promotion of questions Encouraging patients to ask questions after an education session or appointment was also mentioned as a way to assist patients in self-management. The participants noted that at times, it is difficult to truly ascertain whether a topic was understood clearly by the patient without specifically prompting them. In addition, the suggestion that patients ask questions from HCPs may also dismiss the power imbalance between HCPs and patient, as stated by a researcher [02/female]: “so you need to show them [patient] to help them become comfortable ... ‘Do not be ashamed to ask me questions. I absolutely need you to ask me questions’ … So we need to dismiss the image that the person, the teacher, or the educator is someone who is kind of a god, goddess, that you cannot ask them.”  3.3.3.1 Better communication by HCPs and building relationships The improvement of HCPs’ communication skills in addition to better patient-physician interactions were suggested as solutions to enhance patient self-management. There was agreement among the 94  participants that HCPs should communicate in ways that allow the patient to competently understand and use health information. A clinician [11/female] stated: “and also, one thing is also that physicians, I speak for myself too, aren't necessarily the greatest at communicating information in a way that is easily understood, … because patients might be able to more easily understand what you are saying if you're able to explain it in a better way.” It was mentioned by an educator [05/female] that building relationships and trust with patients was vital: “that’s kind of what, ... what I’ve learned is that at the end of the day we really do work hard on a daily basis to build relationships with people and get to know people and meet them where they're at, because that’s when they’re gonna (sic) be the most receptive to the information that we have or the resources that we have.”  3.3.3.1 Teach-back method The teach-back method was the most common method used among the participants for assessing patient understanding. Similar to encouraging patients to ask questions, the study participants indicated that the teach-back method was also a way to determine whether patients heard and understood the information that was taught. This technique was described as being useful by an educator [05/female]: “… and if they [patient] aren't able to tell me or explain to me they’ve understood the information they’ve received, that they can apply it to a future situation then that would kinda (sic) be a red flag and I would want to review that information again.” A clinician [12/female] also confirmed this: “… you have to ask them to repeat back to you what information you have given, and if you have instructed them on an inhaler, you have to ask them to repeat back to you how it’s done, or to perform to you how it’s done. But you have to evaluate, test them, to see whether they actually understood you or not.”  95  Table 3.4 contains quotes made by the participants on ‘Possible solutions and evaluation’ for perceived self-management barriers.96  Table 3.4 Quotes on possible solutions and evaluation for perceived self-management barriers  Take-home materials  “Yep (sic), ok yep (sic) so basically meeting with an individual who can explain to them [patient] and provide them with like subsequent materials that they can take home.” – educator [01/female]  “Also mentioned, we do try to provide handouts as well so when people come in for education with our team we may be talking for half an hour forty-five minutes but we try to follow up with a variety of simple handouts, things that are already established … and then also by them being able to take it away they have something to reflect back on to so if it maybe didn’t fully make sense what I said, they now have something that they can read themselves over again to the point where it hopefully does make sense that they weren’t comfortable asking to begin with.” – educator [07/female]  Tailoring education “Being able to provide messages that are about things that people actually care about or being able to help them understand why what you are talking about is important to them, so personalizing information.” – policymaker [03/female]  “The factors are how personalized the information is. There is information and then there is your patient or the person whom you want that to be used by. So how personalizing you made that message, that is really, really, important and we know that from other research that if you make it personalized then it is more likely to be taken up.” – clinician [10/female]  “Yeah, cause people are only interested in their condition, they are not interested in generic (sic), so the best way to increase the skills is to say here’s some information about your condition.” – clinician [12/female]  Follow-up visits “I just might have to follow up a couple of more times with trying to get them to go to their doctor and ask for an action plan but they won’t have it written to remind them.” – educator [04/female]  “Follow-up, continuous follow-up.” – educator [06/female]     97  Promotion of questions “… And then getting them to write down any questions that they have in preparation of their appointment, and generally to keep a document about their progress in their own journals themselves.” – educator [06/female]  “Just the body language and then asking questions, pausing in between and asking questions if they have understood or if they have any questions and if they are not asking any counter questions, then you have maybe some clue that they may not be understanding what you are saying.” – clinician [10/female]  Better communication of HCPs and building relationships  “Oh, yeah, I think there is (sic) ways that health care professionals can communicate, you know, the expertise of the patient and their expertise and how they work together for collaboration.  So yeah, I think there is definitely ways to do that.” – policymaker [03/female]   “I think the first thing is the communication skills and taking time to let them understand it and be able to ask questions in a non-threatening environment because if patients feel like they are being rushed by a health care professional or whoever is providing them with the information, they are not going to ask questions and they are therefore less likely to actually understand it and therefore less likely to do the right thing or follow the instructions.  So giving the right amount of time for communication and not making them feel rushed is really important.” – educator [44/female]  Teach-back method  “… And I think if providers – if health care professionals don’t ask people to say back what they understood, that you can teach patients that at the end of the visit to say, you know, I would just like to go over to summarize.  I would just like to go over what we did today.” – policymaker [03/female] 98  3.4 Discussion Existing research has primarily found patient barriers with self-management to be largely influenced by psychosocial factors (e.g., depression and stress), poor communication with care providers, and lack of support from family members and friends [147,149,150,154]. Nevertheless, the majority of these findings are derived from patients’ perspectives, and typically do not take into consideration the viewpoints of HCPs who work with the target population. The aim of this qualitative investigation was to better understand key informants’ (e.g., HCPs, researchers, and policymakers) perspectives on the perceived barriers an asthma/COPD patient may be faced with in terms of self-management practices and the recommended solutions to overcome such challenges. Thematic analysis of the 45 interviews resulted in seven subthemes stemming from the key theme ‘Perceived barriers to competent self-management’ including ‘Information overload’; ‘Inconsistent information received from HCPs’; ‘Time constraints’; ‘Medical jargon and reading level of materials’; ‘Beliefs and attitudes about treatment’; ‘Lack of patient involvement in developing educational materials’; and ‘Memory problems and age’ and six subthemes: ‘Take-home materials’; ‘Tailoring education’; ‘Follow-up visits’; ‘Promotion of questions’; ‘Better communication of HCPs and building relationships’; and ‘Teach-back method’ from the ‘Possible solutions and evaluation’ key theme. This study is the first of its kind to explore the perspectives of key informants (HCPs, researchers, and policymakers) on perceived asthma/COPD patient self-management barriers and the possible solutions.  One of the barriers to competent self-management as reported by the participants was limited time to provide education and this finding was consistent with studies conducted by Roberts et al. [151] and Young and colleagues [152] on the lived experiences of nurses’ and allied health professionals’ (AHPs) supporting COPD self-management and their perceptions of the challenges in providing such care. 99  Similarly, the participants from this study also identified lack of time impeding the ability to prioritize work tasks (e.g., covering required information but also having enough time to address any other issues that may arise). Although this issue appears to be a systemic factor that would require changes at a system- and policy-level, two solutions to resolve this barrier were suggested by the key informants: (1) the option of conducting more follow-up visits as well as providing take-home materials after an education session; and (2) improvements in HCPs’ communication skills in terms of conciseness and reduced difficulty of information presented to patients. These strategies may minimize the event of a high volume of health information being condensed to fit the allocated time for one session. A common concern for patients is the fact that clinicians do not often engage in asking questions from patients and are seldom inclined to hear the patient’s perspective [155]. Successful patient-physician interaction entails developing interpersonal relationships, facilitation of knowledge transfer through speaking and listening, and involving patients in the decision making process in regard to their care [156]. Additionally, old age and cognitive deficits, resulting in patients feeling less motivated and unwilling to change or learn new habits, were also mentioned by the study participants as challenges hindering optimal self-management. The solution proposed for this challenge was to meet with patients more often in order to provide them the opportunity to be reintroduced or learn more about a previously discussed topic. It is interesting to note that the nurses and AHPs in the study conducted by Young et al. [152] felt that their professional knowledge and skills alone were sufficient in supporting patient self-management. In contrast, my qualitative data did not replicate this finding and in its place, cited HCPs’ concerns re their communication skills. Young’s study [152] also described language and cultural barriers as challenges making self-management more difficult and while this was not a main finding in this study, a few key informants commented on this within the subthemes ‘Beliefs and attitudes about treatment’ and ‘Lack of patient involvement in developing educational materials’. A possible solution for this which was briefly touched 100  on during the interviews, was the idea of including ‘navigators’ within the health care system, to help patients with identifying the needed information and services. This ‘navigator’ could range from a health care professional to a peer patient or a family member.  The most striking finding of this study is the fact that many of the perceived barriers to self-management mentioned by the participants can be classified as systemic barriers indicating a problem with the health care delivery system and patient-physician interaction. At times, patient barriers to self-management are often thought of as a ‘patient problem’ and not a system or policy issue. I believe that a possible reason for this may be due to the fact that the study sample included a broad range of key informants (such as researchers and policymakers in addition to clinical personnel), enhancing relevance to systemic health care issues. The participants had first-hand encounters with asthma/COPD patients either in treatment, in education, in research, or in policy, and recommended potential solutions based on their personal experiences with patients. The solutions proposed in this study confirm that self-management is a concept not only consisting of treatment and treatment adherence, but also involving the establishment of relationships and communication building. ‘Humanomics’, as termed by FitzGerald & Poureslami [157], signifies the acknowledgement of behavioural perspectives (e.g., HL and numeracy) on self-management. In their commentary, they emphasized the need to provide information at the level of the recipient and restated the importance of involving patients in the development of tailored interventions. The authors recognize that proper communication with patients is fundamental and that other aspects such as cultural factors and HL exist in the ability of patients to successfully manage their disease, and have conducted several studies involving Punjabi, Cantonese and Mandarin asthma/COPD patients in material development [158,159].   101  3.5 Conclusions In summary, self-management is a combined effort achieved only through engagement of HCPs, patients, and the system. Active facilitation of self-management practices require complete understanding of the patient, their needs, barriers, and what solutions could be applicable to address the challenges they may face. Although many of the barriers noted by the participants were system-related factors such as time constraints and inconsistent information received from HCPs, the key informants also provided insights into how they effectively countered these problems. Therefore, it is believed that key informants (HCPs, researchers, and policymakers) recognize the need for their responsibility in successful patient self-management. Future directions could include assessing the similarities and differences between patients’ and key informants’ perspectives around self-management barriers and facilitators with the potential to develop a conceptual concept of HL and its effect on asthma/COPD management.    102  Chapter 4: Conclusions  4.1 Overview of the two studies This thesis consisted of two separate studies: (1) a systematic review examining the literature on health literacy (HL) measurement tools related to asthma/chronic obstructive pulmonary disease (COPD) management and their characteristics such as the distribution of the five HL domains as defined by the Calgary Charter on Health Literacy in addition to the underlying content, number of items, types of response options, scoring, readability, and administration; and (2) a qualitative analysis looking into the perspectives of key informants (e.g., health care professionals (HCPs), researchers, and policymakers) who are involved in the care of patients with asthma and/or COPD on the perceived patient barriers to competent self-management and the possible solutions to overcome these barriers. The main aim of my research was to incorporate both sides of the HL equation (patients’ ability and key informants’ perspectives) into the investigation of the role of HL in chronic respiratory disease management.   Among the 65 HL measurement tools identified in the systematic review, the majority of them (n=49) [62-77,79,83,84-90,94,96,99,101,103,104,106-116] were found to assess asthma/COPD patients’ ‘understanding’ or ‘knowledge’ of health information with a limited number of tools assessing the ability to ‘communicate’ health information (n=10) [72,77,79,82-84,90,97,102,104]. Only two [77,84] out of the 65 tools assessed all five domains of HL and less than half of them (n=30) [62-69,76,77,81,83,86,87,90-95,97,99-101,106,107,110,115,118,127] have been validated. In the qualitative analysis, seven key barriers stemmed from the  theme ‘Perceived barriers to competent self-management’ including ‘Information overload’; ‘Inconsistent information received from HCPs’; ‘Time constraints’; ‘Medical jargon and reading level of materials’; ‘Beliefs and attitudes about treatment’; ‘Lack of patient involvement in 103  developing educational materials’; and ‘Memory problems and age’ and six solutions: ‘Take-home materials’; ‘Tailoring education’; ‘Follow-up visits’; ‘Promotion of questions’; ‘Better communication of HCPs and building relationships’; and ‘Teach-back method’ emerged from the ‘Possible solutions and evaluation’ key theme during thematic analysis of the 45 interviews. The findings from the systematic review were verified with chapter 3 as the key themes and subthemes acknowledged limitations with the ‘communicate’ domain. Chapter 2 highlighted the scarcity of HL measurement tools that assessed a patient’s ability to communicate health information, possibly due to the complex phenomenon of communication requiring at least two individuals in the process, and chapter 3 identified self-management barriers (e.g., information overload, inconsistent information received from HCPs) and solutions (e.g., promotion of questions, better communication of HCPs and building relationships) surrounding the theme of communication. In both chapters, the ‘teach-back’ method was raised as a technique for measuring communication and patient understanding in the context of self-management. The ‘teach-back’ method implies that the person receiving the health information restate what they have just learned in their own words and enhances the communication between the patient and the provider (person providing the information).   4.2 Strengths and limitations A major strength of my thesis work is the focus on both perspectives (patients and key informants involved in the care of patients with asthma and/or COPD). In chapter 2, a systematic review was completed on existing HL tools related to asthma/COPD management and their distribution of domains in terms of a patient’s ability to access, understand, evaluate, communicate, and use health information to make informed decisions. Then, in chapter 3, I conducted a qualitative analysis looking at the insights of key informants (e.g., HCPs, researchers, and policymakers) on their firsthand experiences of asthma/COPD 104  patients’ barriers and obstacles to self-management and their suggestions to overcome these issues in practice. Consideration of both sides of the self-management equation ensured that the information collected on HL was comprehensive and inclusive of all key players in the health care interaction. The systematic review also has strengths. All five HL domains in addition to numeracy were included in the search strategy which enabled me to acquire an abundance of HL tools related to asthma/COPD management. In addition, study selection and data extraction were carried out by two reviewers (and a third reviewer when necessary) at all times to minimize bias. One of the strengths of the qualitative study is the variation of genders, professions, and geographic locations in the study sample. The study sample comprised of researchers and policymakers as well as HCPs which enriched the quality of the data, providing perspectives into policy and the health care system.  Regardless, this thesis work has its limitations as well. The search in the systematic review was limited to English language publications only and this may have resulted in loss of quality and/or relevant information. Furthermore, tools that assessed the HL of health care providers, caregivers, or the general population were excluded from this review; however, HL extends beyond the individual and requires understanding of all key players involved. Also, some of the tools included in the review were self-administered and most of them were self-evaluation type questions which may be of concern due to reasons such as tendency to over evaluate self ability and skipping or not answering all questions.  In the qualitative study, the main objective was to assess key informants’ perspectives on patient self-management and therefore, a limitation would be the absence of patients’ ideas in the findings. A future study looking at the comparisons between patients’ and key informants’ perspectives in regard to the barriers and solutions for self-management practices is ideal. In terms of the study sample, purposeful sampling resulted in twice as many females as males and also a limited number of policymakers. An 105  additional number of policymakers may provide a better idea re key informants’ perspectives on perceived patient barriers and solutions on a large scale. Moreover, analysis of data between the different professions was not conducted. This could be a point of further research to determine if different themes and subthemes may occur across the different professions. Nonetheless, I believe that both studies contributed to the knowledge on the role of HL from the outlook of patients and key informants’ understanding on the real needs of asthma/COPD patients in terms of disease management.   4.3 Implications of research findings Being able to access, understand, evaluate, communicate, and use health information to make informed decisions for one’s health is fundamental for the self-management of chronic diseases. My thesis work presents a comprehensive and coherent view of HL and its role in asthma/COPD management. The studies presented in this thesis provide significant contributions to both research and clinical practice by recognizing the shortages and deficiencies with the definition of HL, its measurement, and identifying the possible solutions to counter patient barriers for better self-management. In chapter 2, it is evident that attention needs to be focused on clearly defining HL and its domains. Although the majority of the identified tools assessed patients’ ‘understanding’, it is not clear which of the HL domains are most salient. More work needs to be done towards conceptualizing a unified definition of HL and reframing the CCHL based on the insights developed from this work (e.g., including other domains such as digital literacies, structural competency, efficacy) in order to be able to successfully develop and evaluate a HL measurement tool for asthma/COPD management. The distribution of the five HL domains in a measurement tool also needs to be further studied; barring any evidence suggesting that some domains may be more important than others. A comprehensive and validated HL measurement tool would be able to identify the more important HL domains once used in a target population. The Medical Interview 106  Satisfaction Scale (MISS-21) [77] and the 1600 REALISE ASIA Asthma Patient Survey Questionnaire [84] are two measurement tools identified in the review as containing assessment of all five HL domains. In spite of this, neither of these tools were designed with the explicit purpose of assessing HL and hence, show a disproportionate distribution of the five domains among the items. Furthermore, both tools are limited in that they do not assess the actual ability of patients to actively participate in their medical care (i.e., performance-based assessment of the five domains); do not address the role of the HCP in communication; nor provide a mechanism of feedback to HCPs in regard to which HL domains or skills are deficient. The development of an all-inclusive and validated HL measurement tool for asthma/COPD management will not only assist researchers and clinicians to accurate measure patients’ HL but also capture the specific areas and skills where more work or attention may be needed.   In chapter 3, I provided new insights into the understanding of patient barriers and solutions through the lens of key informants (e.g., HCPs, researchers, and policymakers). The subthemes related to both the barriers and solutions from the qualitative analysis illustrate a need for change within the health care system in the five HL domains. The findings show that improvements are required in terms of the interactions (mainly communication) between patients and HCPs in order to successfully engage patients in the use of self-management practices. Practice implications could include identifying and training clinician leaders as so called ‘agents of change’ [160] from a self-management perspective. These leaders could both disseminate education to relevant care providers, and ensure ongoing quality at a practice level. Moreover, improvements in HCPs’ communication skills can be established by educating early career physicians on the concept of HL and its five domains to incorporate them early in the process. Education that is provided to patients, either verbally or in writing, must also be tailored to the individual’s situation (e.g., lifestyle and cultural background) to ensure applicability and use. Other opportunities for 107  this work may include the integration of patients in decision making and involvement of family members not only in the delivery of care but also from start with the development of educational materials. In addition, insights and engagement of key stakeholders (e.g., patients, HCPs, researchers, and policymakers) is critical to ensure practicality of a HL measurement tool for both the clinical and research setting.  4.4 Concluding remarks This research is part of a multi centre project funded by the Canadian Institutes of Health Research (CIHR) aiming to develop and validate a new HL measurement tool to optimize asthma/COPD management. The findings from the systematic review along with the qualitative data collected from key informant interviews will facilitate the development of a comprehensive HL respiratory-specific tool, a new assessment standard if you will. An improved and enhanced HL measurement tool that can accurately assess the HL of patients as well as identify the weaknesses and deficiencies between each of the domains in patients will be able to suggest better interventions that can be targeted for those specific domains and to improve the management of chronic diseases. In addition to facilitating the development of the tool, the findings from chapter 3 convey important clinical and policy implications. It is commonly believed that the role of HL should be primarily concentrated on the ability of patients; however, my qualitative analysis showed that the interviewed key informants acknowledge the shortcomings to competent self-management on their part and on the responsibility of the system. Therefore, it is suggested that HL researchers and health care programs investigate the possible implementations of new strategies for chronic respiratory disease management with a specific emphasis on the concept of ‘communication’.   108  Bibliography  [1]  McKeown RE. The Epidemiological Transition: Changing Patterns of Mortality and Population Dynamics. Am J Lifestyle Med. 2009 Jul 1;3(1 Suppl):19S-26S.  [2]  World Health Organization. Global Health and Aging. Geneva, Switzerland: WHO, 2011.  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Int J Chron Obstruct Pulmon Dis. 2016 Aug 3;11:1811-1822. doi: 10.2147/COPD.S105408. eCollection 2016.  [159]  Poureslami I, Nimmon L, Doyle-Waters M, Rootman I, Schulzer M, Kuramoto L, et al. Effectiveness of educational interventions on asthma self-management in Punjabi and Chinese asthma patients: a randomized controlled trial. J Asthma. 2012 Jun;49(5):542-551. doi: 10.3109/02770903.2012.682125.  [160]  Hilliard J. Influencing health behavior: physicians as agents of change. Cleveland Clinic Journal Medicine. 1994 March;61(2):147-152.  120  Appendices  Appendix A: MEDLINE and Embase (Ovid) search Search was executed on: Nov. 26, 2015  Database: Ovid MEDLINE(R) In-Process & Other Non-Indexed Citations and Ovid MEDLINE(R) <1946 to Present> Search Strategy: ---------------------------------------------------------------- 1     health literacy/ (2464) 2     health literacy.tw. (3573) 3     or/1-2 (4569)  4     Health/ (19325) 5     communication/ or access to information/ or communication barriers/ or health communication/ or information seeking behavior/ (78162) 6     information literacy/ (129) 7     literacy.tw. (10430) 8     ((access$ or seek$) adj5 information).tw. (15719) 9     (literac$ adj5 information).tw. (614) 10     or/5-9 (101597) 11     4 and 10 (807) 12     Health Knowledge, Attitudes, Practice/ (81606) 13     health education/ (54598) 14     consumer health information/ (2311) 15     patient education as topic/ (74445) 16     or/11-15 (197014)  17     Questionnaires/ (337065) 18     Educational Measurement/ (30218) 19     Psychometrics/ (59513) 20     (measures or measurement or test? or assessment or screen or screening or instrument).tw. (3003306) 21     or/17-20 (3245730)  22     16 and 21 (66008)  23     exp Asthma/ (112972) 24     lung diseases, obstructive/ or bronchitis/ or bronchiolitis/ or bronchitis, chronic/ or pulmonary disease, chronic obstructive/ or pulmonary emphysema/ (76726) 25     23 or 24 (180011)  26     16 and 21 and 25 (1528) 121  27     3 and 21 and 25 (55) 28     26 or 27 (1554)  29     limit 28 to yr="1985 -Current" (1526) 30     limit 29 to English language (1341)  31     comment/ or editorial/ or letter/ or news/ (1686865) 32     30 not 31 (1326) 33     limit 32 to "review articles" (117) 34     limit 32 to systematic reviews (70) 35     33 or 34 (150) [Reviews] 36     32 not 35 (1176)  ------------------------------------------------------------------------------------------------------------------------------------------ Search was executed on: July 8, 2016  Results: 92     90 not 91 (1808) 95     limit 90 to (conference paper or conference proceeding or "conference review") (38)  Database: Embase <1980 to 2016 July 08> Search Strategy: ---------------------------------------------------------------- 1     health literacy/ (4865) 2     health literacy.tw. (5028) 3     1 or 2 (6749)  4     access to information/ (15491) 5     help seeking behavior/ (6654) 6     (help adj2 behavio?r).tw. (1557) 7     ((seek$ or access$) adj4 information).tw. (17789) 8     information seeking/ (1649) 9     information retrieval/ (27225) 10     or/4-9 [Assessing health info] (65097)  11     medication understanding/ (1) 12     comprehension/ (21961) 13     drug self administration/ (9070) 14     knowledge/ (25865) 15     language ability/ (9352) 16     reading/ (43242) 17     ((consumer? or patient) adj3 assessment).tw. (15733) 18     or/11-17 [Understanding] (118956)  122  19     communication skill/ (8805) 20     interpersonal communication/ (136542) 21     doctor patient relation/ (86091) 22     (communicat$ adj5 information).tw. (11952) 23     or/19-22 [Communication] (221559) 24     decision making/ (168731) 25     consumer health information/ (2858) 26     awareness/ (40495) 27     health care access/ (44348) 28     (evaluat$ adj5 information).tw. (15308) 29     or/24-28 [Evaluation] (266860)  30     patient compliance/ (110554) 31     ("use" adj3 information).tw. (20250) 32     ((patient? or consumer?) adj5 (knowledge or practice or judgement or skills?)).tw. (76410) 33     patient assessment/ (25488) 34     or/30-33 [using information] (228156)  35     health behavior/ (51230) 36     health education/ (83008) 37     drug information/ or medical information/ (79749) 38     patient education/ (95416) 39     attitude to health/ (90183) 40     health belief/ (7159) 41     mass communication/ (12716) 42     information dissemination/ (16571) 43     patient preference/ (9587) 44     patient information/ (21672) 45     attitude to illness/ (3852) 46     calculation/ (75666) 47     functional status assessment/ (784) 48     functional status assessment/ (784) 49     functional assessment/ (53593) 50     or/35-49 [General] (547879)  51     or/3,10,18,23,29,50 (1098284)  52     questionnaire/ (484168) 53     screening/ (146718) 54     psychometry/ (49155) 55     scoring system/ (201180) 56     criterion related validity/ or validity/ (37333) 57     reliability/ or internal consistency/ or test retest reliability/ (120755) 58     validation process/ (84885) 59     reproducibility/ (170840) 60     health survey/ (168594) 123  61     content validity/ (4001) 62     construct validity/ (8354) 63     rating scale/ (95692) 64     screening test/ (55112) 65     measurement/ (87195) 66     validation study/ (57691) 67     "assessment of humans"/ (7123) 68     "named inventories, questionnaires and rating scales"/ (14527) 69     instrument/ (23321) 70     principal component analysis/ (28372) 71     factorial analysis/ (30589) 72     "sensitivity and specificity"/ (250234) 73     face validity/ (2064) 74     Likert scale/ (6734) 75     criterion related validity/ (1510) 76     self report/ (83687) 77     self evaluation/ (23997) 78     (psychometric or item generation or short form or internal consistency).tw. (75904) 79     or/52-78 (1800131)  80     51 and 79 (210176)  81     exp *asthma/ (138861) 82     *chronic obstructive lung disease/ or *obstructive airway disease/ (47577) 83     *pulmonary rehabilitation/ (1862) 84     *lung emphysema/ or *emphysema/ (14402) 85     or/81-84 (196353)  86     51 and 79 and 85 (2560)  87     limit 86 to yr="1985 -Current" (2558) 88     limit 87 to English language (2345) 89     limit 88 to (editorial or letter or note) (144) 90     88 not 89 (2201) 91     limit 90 to (conference abstract or conference paper or conference proceeding or "conference review") (393) 92     90 not 91 (1808) 93     MEDLINE.cr. (10098786) 94     92 not 93 (1552) 95     limit 90 to (conference paper or conference proceeding or "conference review") (38)       124  Appendix B: Data extraction forms Health Literacy Data Extraction Fields for Tools Tool ID  Name of tool  Name of person extracting data  Year of publication  Where was it developed (country)  Who developed the tool  Purpose of the tool  Target population for which the tool was designed (gender, age, level of education, chronic disease)  Versions of the tool (e.g., short form, revised)  Who administers the tool (e.g., self-administered, interviewer-administered)  Total number of items  Sections (topics) in the tool  Number of items in Access domain  Number of items in Understand domain  Number of items in Evaluate domain  Number of items in Communicate domain  Number of items in Use domain  Number of numeracy items  Number of items not measuring health literacy  How is the tool scored  Strengths of the tool  Weaknesses of the tool  Date of completion of data extraction  Notes   Tool Items and their Domains (Completed by two reviewers independently if domains not stipulated) Data Extractor Tool ID Item #  HL Domain Notes    Access          Understand          Evaluate       125     Communicate          Use          Numeracy          Not HL        Health Literacy Data Extraction Fields for Studies  Name of person extracting data  Tool ID  Authors  Title of paper  Year of publication  Published or grey literature?  Name of journal (if applicable)  Geographic location of development/validation  Is this paper a development and/or validation study?  Purpose of the paper/study (include hypotheses being tested)  Study design  How was the sample obtained?  Description of the sample (gender, age, level of education, chronic disease)  Were patients and/or caregivers asked to provide input on content/face validity?  Which version of the tool is being developed/validated  Underlying constructs of the tool  Reported time to participants to complete the tool  Readability - scale used and result  Strengths of the study  Weaknesses of the study  Date of completion of data extraction  Notes      126  Appendix C: Checklist for reporting key components of validated tools Tool name Conceptual model/framework Five HL domains Validation processes Total score Asthma General Knowledge Questionnaire for Adults with Asthma [62] 0 0 1 1 The Lung Information Needs Questionnaire (LINQ) [86] 1 0 1 2 12-Item Consumer Asthma Knowledge Questionnaire (Cq) with a True/False Response [63] 1 0 1 2 Asthma Self-Management Questionnaire (ASMQ) [64] 1 0 1 2 Asthma Knowledge Questionnaire [68] 1 0 1 2 Asthma self-management knowledge questionnaire [65] 1 0 0.5 1.5 The Knowledge, Attitude, and Self-Efficacy Asthma Questionnaire (KASE-AQ) [109] 1 0 1 2 Bristol COPD Knowledge Questionnaire (BCKQ) [87] 1 0 1 2 Asthma Numeracy Questionnaire (ANQ) [95] 1 0 1 2 Patient-Clinician Communication [97] 0 0 1 1 Understanding COPD Questionnaire (UCOPD) [66] 1 0 1 2 Use of MDIs in Hospital Environments [99] 1 0 0.5 1.5 Asthma Behaviour Change (ABC) [69] 1 0 1 2 Health Literacy Screening Questions Assessment [107] 1 0 1 2 Knowledge and Attitudes of Asthma [76] 1 0 1 2 Patient Asthma Concerns Tool (PACT) [100] 1 0 1 2 Medical Interview Satisfaction Scale (MISS-21) [77] 1 1 0.5 2.5 Quality of Communication Questionnaire (QoC) [90] 1 0 1 2 Medication Adherence Report Scale (MARS-5) [93] 0 0 0.5 0.5 Assessment of Care for Chronic Conditions [91] 0 0 1 1 127  Asthma Opinion Survey [114] 1 0 1 2 Seattle Obstructive Lung Disease Questionnaire (SOLDQ) [92] 1 0 1 2 Medication and Inhaler Adherence Scale [81] 0 0 1 1 Asthma Knowledge Questionnaire [101] 1 0 0.5 1.5 Judgement Skills Scale [83] 1 0 1 2 COPD Self-Management Interview (COPD-SMI) [106] 0 0 1 1 Knowledge and Attitude Assessment [117] 1 0 0.5 1.5 Evaluation of Pictorial COPD Action Plan [126] 0.5 0 0.5 1 European Health Literacy Survey Questionnaire (HLS-EU-Q) [94] 1 0 0.5 1.5 Chronic Obstructive Pulmonary Disease Knowledge Questionnaire (COPD-Q) [67] 1 0 1 2              128  Appendix D: Qualitative interview guide  1. Can you provide some examples of barriers to chronic disease management that are imposed on patients due to limited knowledge and low health literacy skills?   2. As a health care provider/professional, what are some of the unique challenges that your patients/clients may have come across in accessing health information?  3. Were there instances where your patients/clients had difficulty in understanding the information you provided?  4. How do you know when your patients/clients did not understand the health information given, or when did you know you had to explain or elaborate on concepts?  5. What would help to make it easier for your patients/clients to understand the information given to them in regards to their health and health literacy?  6. Can you identify some barriers that inhibit clear communication of health information to patients /clients with limited literacy skills in regards to chronic disease management?  7. In your opinion, what factors would help in making your patients/clients confident about the validity and relevancy of the information that they receive?   8. In your opinion, what would promote your patients/clients to use the information they have received about asthma/COPD in their routine life?   9. What are the challenges you may face in providing services to diverse patient populations? i.e., differences in regards to culture, ethnic background, gender, age, education, and etc.   10. What are some actions that you normally take to address these challenges?   11. What are some additional things that you think can be done to improve care/services?     

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