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Assessment of atrial fibrillation patients' education needs. Salmasi, Shahrzad 2018

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Assessment of atrial fibrillation patients’  education needs.  by Shahrzad Salmasi B. Pharmacy (Hons), Monash University, 2016 A THESIS SUBMITED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE  in The Faculty of Graduate and Postdoctoral Studies (Pharmaceutical Sciences) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) April 2018 ©Shahrzad Salmasi, 2018                                                                                                                                        ii  The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the thesis entitled: Assessment of atrial fibrillation patients’ education needs. Submitted by Shahrzad Salmasi in partial fulfillment of the requirements for the degree of Master of science in Pharmaceutical Sciences. Examining committee: Dr. Peter Loewen Supervisor  Dr. Larry Lynd Co-supervisor  Dr. Mary De Vera Supervisory committee member  Dr. Mark Harrison Additional examiner  Additional supervisory committee members: Dr. Arden Barry Supervisory committee member  Dr. Nick Bansback Supervisory committee member          iii  Abstract  Introduction: Education facilitates construction of a correct illness representation, corrects beliefs about medications and improves patients’ illness-treatment coherence. There is no consensus on the best education strategy for atrial fibrillation (AF) patients. Identifying patients’ education needs is the first step towards development of an effective education program.  Purpose: The overall aim of this thesis was to provide insights into AF patients’ education needs from patient and clinician viewpoints, and to inform the design of AF patient education programs and initiatives.  Methods: The current evidence on AF patients’ knowledge gaps was summarized through a literature review. This was followed by a qualitative descriptive study utilizing semi-structured interviews with patients and clinicians who were recruited through purposive sampling. All interviews were conducted by a Master of science student. The interviews were conducted in English, in a private room or over the phone, without the presence of any non-participants. Each interview lasted approximately 30 minutes and was audio-recorded. Verbatim transcripts were generated within three days of the interview. The reporting of this qualitative study conforms to the Standards for Reporting Qualitative Research (SQRQ) and the Consolidated Criteria for Reporting Qualitative Research (COREQ).  Analysis: The analysis of the data was iterative, occurring as interviews proceeded. The interview guides were revised frequently based on the emerging data. The data collected were analyzed through inductive qualitative thematic analysis. Data from patients and clinicians were analyzed independently.  Results: Eleven clinicians and ten patients were interviewed. Clinician and patient interviews led to emergence of three and four themes, respectively. This research went beyond identification of knowledge gaps by offering a rich description on patients’ misconceptions, information seeking behavior, education style preferences, attitudes towards online education, expectations of an education program, emotional education needs, preferences for risk communication, and clinicians’ views on the topic. A key finding of my study was the identification of patients’ emotional education needs: the need for education that addresses patients’ concerns and relieves their anxiety. Summarizing my study findings, I offered a set of recommendations that can be used by those involved in educating AF patients.       iv  Lay summary  The aim of this thesis was to explore atrial fibrillation (AF) patients’ education needs to inform the development of evidence-based education programs for them. The thesis includes a review of the literature to identify AF patients’ knowledge gaps, which was then complemented by a study involving interviewing both patients and clinicians to offer a rich, multi-perspective insight into AF patients’ education needs. The results of this study provided insight into patients’ education style preferences, attitudes towards online and in-person education, information-seeking behavior, and misconceptions. A key finding of this study was identification of AF patients’ “emotional education needs”, the need for an education that addresses patients’ concerns and relieves their anxiety. Based on the results of this research, I offer recommendations for those involved in educating AF patients.                v  Preface All work presented in this thesis, including design, study participant recruitment, analysis and write‐up were conducted by the Masters’ candidate.  Certificates of approval were obtained from the following research ethics boards for this study: 1) UBC Behavioral Research Ethics Board [H17-01700] 2) Fraser Health Research Ethics Board [2017-088 (H17-01700)]                   vi  Table of contents   Abstract .......................................................................................................................................... iii Lay summary ................................................................................................................................. iv Preface............................................................................................................................................. v Table of contents ............................................................................................................................ vi List of tables .................................................................................................................................... x List of figures ................................................................................................................................. xi List of abbreviations ..................................................................................................................... xii Acknowledgements ...................................................................................................................... xiii Chapter 1: Introduction ................................................................................................................... 1 1.1: Patient education .................................................................................................................. 1 1.2: The relationship between patient education and medication adherence .............................. 2 1.3: Atrial fibrillation management: Introduction and current challenges .................................. 4 1.4: Current gaps ......................................................................................................................... 6 1.4.1: Shortcomings of AF education programs ...................................................................... 6 1.4.2: Literature gaps ............................................................................................................... 7 1.5: Qualitative approach and research paradigm ....................................................................... 8 1.6: Thesis objective and organization ........................................................................................ 9 Chapter 2: AF Patients’ knowledge gaps of their disease and medications: a review of the literature ........................................................................................................................................ 11 2.1: Introduction ........................................................................................................................ 11 2.2: Methods .............................................................................................................................. 11 2.2.1: Research questions ...................................................................................................... 11 2.2.2: Search strategy ............................................................................................................. 12 2.2.3: Study selection and data extraction ............................................................................. 14 2.2.4: Data synthesis .............................................................................................................. 14 2.2.5: Data analysis ................................................................................................................ 15 2.2.6: Quality assessment ...................................................................................................... 16 2.3: Results ................................................................................................................................ 17 2.3.1: Search results ............................................................................................................... 17 2.3.2: Quality of the included studies .................................................................................... 22 vii  2.3.3: What is known about patients’ knowledge? ................................................................ 23 2.3.4: What are patients’ knowledge gaps and misconceptions? .......................................... 24 2.4: Discussion .......................................................................................................................... 29 2.4.1: Limitations of the review ............................................................................................. 31 2.4.2: Future directions .......................................................................................................... 33 2.5: Conclusion.......................................................................................................................... 35 Chapter 3: Assessment of clinicians’ views on AF patients’ education needs ............................. 36 3.1: Introduction ........................................................................................................................ 36 3.2: Methods .............................................................................................................................. 36 3.2.1: Study design ................................................................................................................ 36 3.2.2: Setting .......................................................................................................................... 36 3.2.3: Sampling strategy ........................................................................................................ 37 3.2.4: Data collection ............................................................................................................. 38 3.2.5: Data processing ........................................................................................................... 39 3.2.6: Data analysis ................................................................................................................ 39 3.3: Results ................................................................................................................................ 40 Theme 1: Patients’ knowledge gaps and misconceptions ......................................................... 42 i) Perceived knowledge gaps ............................................................................................. 42 ii) Misconceptions............................................................................................................... 44 Theme 2: Clinicians’ experience teaching AF patients ............................................................. 46 i) Stroke and bleeding risk communication ....................................................................... 46 ii) Current challenges in educating patients ........................................................................ 48 iii) Patients’ emotional education needs .............................................................................. 49 Theme 3: Clinicians’ suggestions for an education program .................................................... 51 i) Content ........................................................................................................................... 51 ii) Design and delivery ........................................................................................................ 52 iii) Patient Testimonials ....................................................................................................... 53 3.4: Chapter conclusion ............................................................................................................. 54 Chapter 4: Assessment of patients’ views on their education needs ............................................ 56 4.1: Introduction ........................................................................................................................ 56 4.2: Methods .............................................................................................................................. 56 4.2.1: Study design ................................................................................................................ 56 viii  4.2.2: Setting .......................................................................................................................... 56 4.2.3: Sampling strategy ........................................................................................................ 56 4.2.4: Data collection ............................................................................................................. 58 4.2.5: Data processing ........................................................................................................... 58 4.2.6: Data analysis ................................................................................................................ 58 4.3: Results ................................................................................................................................ 59 Theme 1: Emotional appraisal of the diagnosis ........................................................................ 60 Theme 2: Information seeking behavior ................................................................................... 62 i) Information sources ........................................................................................................ 62 ii) Reasons for referring to the internet ............................................................................... 63 Theme 3: Knowledge gaps ........................................................................................................ 64 Theme 4: Education preferences ............................................................................................... 66 i) Setting preferences ......................................................................................................... 66 ii) Risk communication style preferences ........................................................................... 67 iii) Content suggestions........................................................................................................ 68 iv) Design suggestions ......................................................................................................... 68 4.4: Chapter conclusion ............................................................................................................. 70 Chapter 5: Summary of the findings and conclusion .................................................................... 72 5.1: Summary of clinician and patients’ views ......................................................................... 72 5.2: Implications for future AF education programs ................................................................. 74 5.3: Discussion .......................................................................................................................... 76 5.3.1: Validity of the study findings ...................................................................................... 78 5.3.2: Transferability of the findings ..................................................................................... 79 5.3.3: Limitations and strengths ............................................................................................ 81 5.3.4: Future research directions ............................................................................................ 82 5.3.5: Future practice implications ........................................................................................ 84 5.4: Conclusion.......................................................................................................................... 84 References ..................................................................................................................................... 85 Appendix ....................................................................................................................................... 94 Meta-analysis: Medication-related knowledge categories ........................................................ 94 Meta-analysis: AF- and stroke- related knowledge categories ............................................... 126 Interview guides .......................................................................................................................... 140 ix  Interview guide- Clinician ....................................................................................................... 140 Interview guide- Patient .......................................................................................................... 141 Code books.................................................................................................................................. 142 Code book- Clinicians ............................................................................................................. 142 Code book- Patients ................................................................................................................ 149 Summary and interpretation of the identified knowledge gaps .................................................. 156                     x  List of tables  Table 1: Characteristics of the included studies. Table 2: Quality assessment results. Table 3: Characteristics of the clinician participants. Table 4: Characteristics of the patient participants.                                      xi  List of figures Figure 1: The PRISMA flow diagram. ......................................................................................... 13 Figure 2: Number of publications included from each continent. ................................................ 21 Figure 3: Data collection methods used in the included studies. .................................................. 21 Figure 4: Number of participants taking different OATs. ............................................................ 22 Figure 5: Quality assessment results of the included studies. ....................................................... 23 Figure 6: Patients’ knowledge of atrial fibrillation and stroke. .................................................... 26 Figure 7: AF patient's knowledge of OAT medications. .............................................................. 27 Figure 8: Thematic map of clinician results. ................................................................................ 42 Figure 9: Thematic map of patient results. ................................................................................... 60                                 xii  List of abbreviations  AF Atrial fibrillation AKA Anticoagulant knowledge assessment ARR Absolute risk reduction BC British Columbia CHA2DS2-VASc Congestive heart failure, Hypertension, Age> 75, Diabetes, Stroke, Vascular disease, Age 65-74, Sex category (female). CI Confidence interval COREQ Consolidated criteria for reporting qualitative research CSM Common sense model DOAC Direct oral anticoagulants HAS-BLED Hypertension, Abnormal renal function, Stroke, Bleeding, Labile INR, Elderly (age>65), Drug usage history HBM Health belief model INR International normalized ratio IRB Institutional review board JAKQ. Jessa Atrial Fibrillation Knowledge Questionnaire NOAC Novel/non-vitamin K oral anticoagulants OAC Oral anticoagulant OAT Oral anti-thrombotic OR Odds ratio QD Qualitative descriptive RCT Randomized clinical trial RRR Relative risk reduction SPAF Stroke prevention for atrial fibrillation TTR Time in therapeutic range STROBE Strengthening the reporting of observational studies in epidemiology UBC University of British Columbia VKA Vitamin K antagonist           xiii  Acknowledgements  Foremost, I would like to express my most sincere gratitude to my supervisor, Dr. Peter Loewen, a brilliant clinician, a dedicated teacher, a talented researcher, and an extremely supportive mentor who believed in me, and saw the potential in me, when no one else did. This project would not have been possible without his meticulous suggestions, thought-provoking questions, astute criticism and inexhaustible patience and support. His support however, went well beyond this research project. He helped me become a better version of myself and changed my life in ways that words cannot ever express. I am forever indebted and thankful for the support and the many opportunities he offered me over the past two years.  Special thanks are also due to my co-supervisor, Dr. Larry Lynd, for his continuous guidance over the course of my graduate studies, and for helping me set research goals that were in-line with my interests, but also achievable in a two years’ time frame.  I would also like to thank the chair of my thesis committee, Dr. Abby Collier, whose office door was always open to me, and the rest of the committee members, Dr. Mary De Vera, Dr. Nick Bansback, and Dr. Arden Barry, not only for their time, but also for generously providing invaluable consultation and feedback on the design and conduct of my research study.   Much gratitude also goes out to Mrs. Jenny MacGillivray, and Dr. Leanne Kwan for their assistance in participant recruitment at the atrial fibrillation clinics, at the Vancouver General Hospital and the Royal Columbian Hospital, respectively.  I would also like to gratefully acknowledge Dr. Anita Kapanen, for her advice on patient recruitment and her assistance with the ethical aspects of my research. I am also very appreciative to Dr. Annalijn Conklin who guided me through the data analysis stage of the project. My utmost thanks also go to the study informants who offered their time and trusted me with their stories.   I am sincerely grateful to Dr. Patricia Gerber, whose heart-warming kindness, and words of encouragement helped ease the emotional struggles of moving to a new country.  I am extremely thankful for her unfailing support in the past two years.  I would also like to express a deep sense of gratitude to my amazing parents, Azita and Mohammad Reza, for their unconditional love, encouragement and support over the past two years, despite the long distance between us. They inspired me to be independent and to follow my dreams.                                                                                                                                                       1  Chapter 1: Introduction  1.1: Patient education According to the United Nations, attaining the highest achievable standard of health is one of the most basic rights of every human being. Health promotion is grounded on this very fundamental human right and is defined as “the process of enabling people to increase control over, and to improve their health”.1 Patient education has been a vital component of health promotion for years. Campaigns to promote contraceptive use, immunization and smoking cessation, have long been around.2  The World Health Organization (WHO) defines patient education as: “consciously constructed opportunities for learning involving some form of communication designed to improve health literacy, including improving knowledge, and developing life skills, which are conducive to individual and community health”.3   Health promotion outcomes can be arranged in a hierarchy, with improved patient health literacy and knowledge- the goals of patient education- as the foundational outcomes and prerequisites to achieve the higher-end outcomes such as improved adherence. Adherences is defined as: “the extent to which a person's behavior — taking medication, —corresponds with agreed recommendations from a health care provider”.4   Achieving improved adherence is particularly important, and the ultimate goal of health promotion initiatives, especially those targeting patients with chronic conditions where pharmacotherapy is the cornerstone of management.5 Medications cannot exert their full effect if 2  they are not taken as prescribed. In atrial fibrillation (AF), for example, nonadherence within the first six months of therapy initiation has been associated with significantly higher risk of thrombosis (ischemic stroke, deep vein thrombosis and pulmonary embolism).6  Patient education, therefore, targets the most fundamental skills required in achieving good health outcomes. Behavior modification is however complex and affected by several factors such as: social norms –“the standards against which the appropriateness of a certain behavior is assessed.7”; social support (emotional, instrumental and informational), degree of perceived behavioral control, and self-efficacy, as explained by the theory of planned behavior8 and the social cognitive theory.9 Nevertheless, education has been associated with better adherence as explained in more detail later in this chapter, and can be a foundational step, along with many other interventions, towards improved therapy adherence.  1.2: The relationship between patient education and medication adherence Non-adherence can either be intentional or unintentional. While unintentional non-adherence is unrelated to patients’ understanding of their condition and can be improved by simple techniques (memory aids), intentional non-adherence is more complex.10    One of the factors underlying intentional non-adherence is inaccurate illness representation.11 Patients’ perceived understanding of, and beliefs about the cause, consequences, symptoms, duration, and cure or management of their illness, as well as their affective assessment of the disease makes up their “cognitive illness representation”.10  Poor illness-treatment coherence is another important reason behind poor adherence, as explained by the self-regulatory theory.10, 12, 13 The cognitive representation of illness and the representation of its possible treatments form a 3  cohesive pattern only if the actions taken to manage the illness (the prescribed therapy) are perceived by the patient to be effective.11 In a cross-sectional study of hypertension patients for example, it was observed that patients had better adherence if they believed that antihypertensive medications were effective and that hypertension was amenable to control by treatment.11, 14   Education facilitates construction of a correct illness representation and improves patients’ illness-treatment coherence. It has been reported that when the relationship between smoking and increased risk of cervical cancer is explained to women in a coherent way, they are more likely to undergo cancer screening and more willing to quit smoking.15 Education has also been shown to correct beliefs about medications.16-19 In the study by Magadza et al. the number of hypertensive patients who believed that their condition would deteriorate without their anti-hypertensives increased from 73.3% to 88.9% (p<0.05) after education. Education can improve patients’ perceptions of the necessity of their therapy16, 20 and reduce unjustified concerns about their medications.13, 16 Magadza et al. reported a significant reduction in  patient’s mean concerns score from 17.9 (SD 4.0) to 15.6 (SD 4.4), after receiving education( p<0.01). Moreover, the number of patients in this study who expressed worries about the long-term consequences of their medications decreased from 35 (77.8%) to 23 (51.1%) after the educational intervention (P<0.001).16 16   Achieving improvements in the illness perception and beliefs about medications through education, is important as they have been associated with improved adherence in several21 chronic conditions such as diabetes, asthma, rheumatoid arthritis, and depression.13, 20-26 Moreover, research has identified patients’ lack of knowledge as a key barrier to therapy uptake 4  and adherence.27, 28  Patient education is therefore an essential and foundational step towards achieving behavioral change in patients. Clifford et al. conducted a randomized controlled trial (RCT) to compare provision of pharmacist telephone counseling education versus no education on adherence and found that the numbers of adherers was 5% more in the education group versus controls (p=0.03).22 Among AF patients taking warfarin, education has been reported to be significantly associated with improved time in therapeutic range (TTR)- the number of days with International Normalized Ratio (INR, measure of blood coagulability) of 2-3.13, 29 Clarkesmith et al. for example observed significantly higher TTR in the education intervention group compared to the usual care group, at 6 months (76.2% vs 71.3%, P=0.035). These findings have important clinical implications because maintaining an INR of 2-3 is imperative for stroke risk reduction,29, 30 hemorrhage prevention29, 30 and better patient outcomes.31 Just a 10% rise in time out of therapeutic range has been significantly associated with increased risk of death (odds ratio (OR) 1.3, 95% confidence interval (CI): 1.2,1.4); ischemic stroke (OR 1.1, 95% CI: 1.0,1.2); and thromboembolic events (OR 1.12, 95% CI: 1.1,1.2).32  1.3: Atrial fibrillation management: Introduction and current challenges Atrial fibrillation is the most common, clinically significant sustained dysrhythmia,33 affecting approximately 1% of the world’s population.34-36 The prevalence of AF is projected to increase by two- to three fold by 2050 with the aging population.34-36 Atrial fibrillation accounts for 15-25% of all ischemic strokes37, 38 and confers a five-fold increase in the risk of stroke and thromboembolism.39, 40 Ischemic strokes related to AF are not only more frequently fatal but also more debilitating than strokes secondary to other causes.41-43 Stroke is the most common cause of 5  acquired permanent debility and the second most common cause of death among adults in western developed countries.44   Oral anticoagulants (OACs) and anti-platelet drugs are collectively called oral anti-thrombotics (OATs). Oral anti-thrombotics are recommended by clinical guidelines for thrombo-prophylaxis, in addition to rate and rhythm management, for AF patients who have additional risk factors.33, 45-47 Oral anticoagulants are extremely effective for thrombo-prophylaxis in AF, achieving relative risk reductions (RRR) of 66% or more.48-50 Several OACs  are available including warfarin and direct oral anticoagulants (DOACs): apixaban (Eliquis®); edoxaban (Lixiana®); dabigatran (Pradaxa®), and rivaroxaban (Xarelto®). Compared to OACs, aspirin® (an antiplatelet), is a less effective but potentially safer option for some patients depending on stroke and bleeding risk levels and patient preferences.46, 47, 51   Only a few studies have looked at illness perception in AF patients. However, it is evident that patients’ cognitive representation of AF is often far from reality.52 In the study by McCabe et al.  65% of patients mistakenly attributed emotional factors such as stress or worry as the cause of their AF, and subjects in this study and those studied by Steed et al. mistakenly perceived AF as life-threatening.53, 54 Moreover, AF patients have been reported to have poorer illness-treatment coherence than patients with heart failure and those who had undergone cardiac surgical procedures.52  Adherence and persistence is also an issue in AF patients. A systematic review of six studies comprising 1.6 million AF patients reported that one quarter of the AF patients demonstrated 6  sub-optimal adherence.55 Medication discontinuation rates among AF patients have been reported to be 18-50% for DOACs over 6-12 months, and 26-62% for warfarin over 1 year. 56-63    1.4: Current gaps  1.4.1: Shortcomings of AF education programs Despite the value of patient education, the best strategy for educating AF patients has yet to be determined.64, 65 A systematic review of AF education interventions, which resulted in 32 papers, found no overall consensus on the most effective structure (duration, frequency, setting), design (group or individual) or delivery (nurse, physician, pharmacist, lay educator, or a combination) of such programs.64   It is also not clear if the design of currently available AF education programs have been based on assessment of patients’ knowledge gaps and education needs.64, 66, 67 The design processes of these programs have rarely been documented.66   A 2017 Cochrane review of the educational and behavioral interventions for AF patients highlighted the need for more theory-driven interventions.68 While there has been great emphasis on the content in education programs, little attention has been paid to established health education and learning principles in designing education initiatives for AF patients.64, 66, 67, 69 Clarkesmith et al., however, recently developed an education program based on the common sense model (CSM).70 The CSM identifies the factors involved in processing of illness-related information by patients.71 This model suggest that creating an illness identity, understanding its 7  consequences, identifying an illness timeline, understanding the causes, and identifying a cure or control for the illness are necessary for the patients to build a complete and accurate cognitive representation of their disease. Another relevant and potentially useful model is the Health Belief Model (HBM) which explains health behavior using four constructs:  perceived susceptibility, perceived severity, perceived benefit, and perceived barriers.72   1.4.2: Literature gaps Identification of patients’ knowledge gaps is a foundational step towards improving patient education strategies. No systematic reviews have been conducted to synthesize the results of studies examining AF patient knowledge and identify areas in need of attention by care providers and education programs. Identification of knowledge gaps is not sufficient to guide the design of an education program. Information processing is a complex phenomenon73 and a thorough educational needs assessment, defined as “ identification of educational objectives that most need to be accomplished in a given instructional situation,”74 is lacking for AF patients. Data about patient education preferences did emerge in Clarkesmith’s study,75 but the findings were limited since the analysis was deductive and the study was not focused on AF patients’ education-related preferences.  There is also no data on clinicians’ current teaching strategies or their opinions related to AF patients’ education needs.76 Since learners may have a limited ability to identify their own educational needs77 clinicians’ views are important for building a complete picture of patients’ education needs.   8  In view of these literature gaps, I aim to provide useful insights into AF patients’ education needs from patient and clinician points of view by employing an inductive descriptive qualitative study design, to inform and facilitate the design of evidence-based AF education programs.   1.5: Qualitative approach and research paradigm While interpretation and description does happen in quantitative studies, it is confined to the results of the statistical analysis of the pre-selected variables, limiting exploration of the “unanticipated”, as it typically does not move beyond our pre-set assumptions.78 Moreover, it does not illuminate the importance participants put on experiences or events.   Qualitative research, on the other hand, enables an in-depth understanding of a phenomenon.79 Qualitative description (QD), a commonly used methodology in healthcare and nursing-related research studies, is a type of qualitative study that is descriptive in nature.80 It aims to answer research questions focused on the who, what, and where of events or experiences to gain insights from informants. Qualitative descriptive studies are hence the method of choice for when there are no or few previous studies examining the phenomenon.81, 82    The aim of QD is neither understanding of customs and culture of individuals (ethnography), developing theory (grounded theory), nor interpreting the experiences of the participants (phenomenology), but provision of an insightful and direct description of the informants’ perspective that is  “close to the data”,82, 83 with no theoretical underpinning.83 In QD research, therefore, researchers commonly examine the topic of interest in its natural state (naturalistic perspective).78  9   Content analysis and thematic analysis are the common analysis approaches used in QD studies. These data analysis approaches allow minimal transformation during analysis, producing a low inference83 and direct insight into informant perspectives.83 Qualitative descriptive is therefore particularly relevant to assessment of patients’ education needs because: 1) the topic has not been explored before; and 2) it provides factual responses to questions about patients’ current state of knowledge, their information seeking behavior in attempt to fill their perceived knowledge gaps, and their attitude towards education.78   1.6: Thesis objective and organization The overall aim of this thesis was to offer insights into AF patients’ education needs from patient and clinician viewpoints to inform the design of evidence-based AF patient education programs or initiatives. The specific objectives of this thesis are: i. To review the current evidence on AF patients’ knowledge gaps and misconceptions regarding their condition and medications. ii. To explore patients’ education needs by interviewing patients and clinicians.  In this chapter, I have highlighted the importance of education for AF patients and its link to adherence, and summarized the published studies on the shortcomings of existing AF education programs. I have also outlined the overall and the specific objectives of this thesis and justified the chosen methodology to achieve them.  10  In chapter 2, I present the results of a literature review that summarizes the current evidence on AF patients’ knowledge gaps with regards to their condition and medications.  In chapter 3, I report the findings of the qualitative descriptive research that was undertaken to understand AF patient’s education needs, from clinicians’ point of view.  In chapter 4, I report the findings of the qualitative descriptive research that was undertaken to understand AF patient’s education needs, from patients’ point of view.  Finally, in chapter 5, I compare clinicians’ views with that of patients. I provide a conclusion that summarizes my findings in terms of their implications for education programs, and provide recommendations for future research and for design of initiatives in the field of AF patient education.          11  Chapter 2: AF Patients’ knowledge gaps of their disease and medications: a review of the literature  2.1: Introduction One strategy to improve patient knowledge is through education. Tang et al. reported that patient knowledge, medication compliance, and anticoagulation control improve after provision of patient education.84 Identification of patients’ knowledge deficiencies is a vital step towards quality improvement for patient education strategies. However, to my knowledge, no literature review has summarized AF patients’ knowledge gaps regarding their condition, their medication, or stroke. The objective of this review is therefore to summarize all the available literature on knowledge of AF patients about their disease and therapy, and to identify their knowledge gaps and misconceptions.  2.2: Methods  2.2.1: Research questions Literature related to patient knowledge in AF, stroke and SPAF anti-thrombotic therapy was reviewed to answer the following research questions: • What is known about patient’s knowledge regarding AF, stroke and, their rate, rhythm and thrombo-prophylaxis medications? • What are patients’ knowledge gaps and misconceptions?                   12  2.2.2: Search strategy  I searched PubMed/Medline, Embase, CINAHL and PSYCHINFO for quantitative and qualitative studies that measured AF patients’ knowledge about AF, stroke, rate/rhythm control and stroke prevention medications from each database’s inception to November 2017. Keywords and MeSH terms related to [“knowledge”, “understanding”, “beliefs”, “education”, “education needs”, “misconception”, “knowledge gaps”, “knowledge assessment”, “knowledge questionnaire”]; AND [“oral anticoagulants”, “antithrombotics”, “warfarin”, “vitamin K antagonist”, “dabigatran”, “rivaroxaban”, “apixaban”, “edoxaban”, “eliquis”, “xarelto”, “coumadin”, “paradaxa” “antiplatelet”, “aspirin”, “acetylsalicyclic acid”, “beta blocker”, “calcium channel blocker”, “rate control”, “diltiazem”, “rhythm control”,  and “stroke prevention”]; AND “atrial fibrillation” were used.  13    Figure 1: The PRISMA flow diagram.      14  2.2.3: Study selection and data extraction  I searched for studies of any study design, in any setting and published in any language that measured people’s knowledge and beliefs about AF, stroke, rate and rhythm control and stroke prevention medications. Studies did not need to meet any predetermined quality criteria to be eligible. Studies with both AF and non-AF cohort were included if the AF patients comprised ≥50% of the cohort or if discrete results for AF patients were reported. Papers on design and evaluation of AF or OAT knowledge assessment questionnaires were included if the participants’ performance results were reported. Studies that reported AF knowledge gaps exclusively among clinicians or caregivers were excluded. Abstracts, letters to editors, conference papers and reports were also excluded. I independently screened titles and abstracts, followed by full texts of the relevant articles.   Data was extracted from the full text of the included studies into a standardized database. I extracted the country of origin, study design, patient population characteristics (age, sex, diagnosis, medications, highest education degree and AF education received), method of data collection, sampling method, as well as the total participants tested, and the number of correct answers given to the AF-, stroke- or medication-related questions.  2.2.4: Data synthesis  Different wording and question formats were used to assess the same aspect of the patient knowledge in the questionnaires administered by the authors of the different studies. Knowledge of OAT-food interactions was, for example, assessed by asking patients to name foods that interact with their OAT, asking patients to agree/disagree with food interaction-related 15  statements or simply asking patients if they need to make any changes in their diet when taking an OAT, in different studies. I classified related questions into single knowledge categories, in this case the “OAT-food interaction” knowledge category.   For each study, results were extracted as the proportion of participants who correctly answered the questions classified under a certain knowledge category. For example, data on proportion of people who knew about interactions between OAT and over the counter medications, and the number of people who knew about OAT-supplement interactions as well as those who demonstrated knowledge of OAT-herbal medication interactions, were all extracted and categorized under the “OAT-drug interaction” knowledge category. For studies that reported the percentage of participants with incorrect answers (e.g. disagreement to a correct food-OAT statement), I transformed the data to the proportion with correct answers, for uniformity, and to allow pooling of the data at the participant level. For studies that reported both investigator-assessed patient knowledge and patient self-assessment, only the investigator assessed knowledge data were extracted and used in the review. The absence of response to the questions were considered demonstration of lack of knowledge and treated as incorrect answers.  2.2.5: Data analysis For every knowledge category, a meta-analysis of proportion was conducted using the total number of patients tested and the number of correct answers. This was performed using MedCalc statistical software version 18.2.1 (MedCalc Software, Ostend, Belgium). A random effects model was applied to generate a pooled proportion and variance using the Der Simonian-Laird method.85 In addition, I2 was used to estimate the heterogeneity among the studies reporting that 16  knowledge category. The individual study results as well as the pooled mean and standard deviation (of the proportion of correct answers) were illustrated using a forest plot for every knowledge category (appendix).   Furthermore, the pooled mean and standard deviation for all the knowledge categories were represented in a forest plot to allow for identification of knowledge gaps (figures 6 and 7). A category was considered a knowledge gap if the point estimate for the pooled mean proportion of participants who demonstrated knowledge of it (responded correctly to questions relevant to that knowledge category) was equal to, or less than 50%, regardless of the confidence intervals around it. The 50% threshold was an arbitrary point adopted from the systematic review done by McCullough et al. on patients’ knowledge about antibiotic resistance.86  2.2.6: Quality assessment  The study design-specific quality of reporting critical appraisal instruments-- STROBE extensions for cohort and cross-sectional studies87, and COREQ for qualitative studies-- were used to assess quality at the study level.88 I critically appraised all the included studies independently of data extraction. Studies received a point for each checklist item they met. All other checklist items were given a zero (if not met) or marked as not applicable. A quality score was computed for each study as the number of items satisfactorily met divided by the total number of applicable items. This quality score was reported as a percentage. The included studies were categorized into three quality categories based on this computed quality score using the thresholds suggested by Stevanovic et al. Studies were classified as “low quality” if they 17  scored <50 % ; “moderate quality” if they scored between 50% to 80 %; and “high quality” if they scored >80 %.89  2.3: Results  2.3.1: Search results  I identified 20 studies28, 52, 90-106, seventeen quantitative and three qualitative, mostly published between 2006-2015. Table 1 summarizes the full characteristics of the included studies. The majority of the included studies were conducted in Europe and North America (figure 2). The most commonly utilized data collection methods among the included studies were survey and interviews (figure 3). Vitamin K antagonists (VKAs) were the most commonly used blood thinner among the participants of the included studies, followed by DOACs (figure 4). The weighted mean age of the participants was 68 years.   The quality assessment results presented in table 2 concluded that most of the included studies (89%) were of high quality with only two studies90, 101 scoring less than 50% on quality assessment (figure 5).        18  Table 1: Characteristics of the included studies. Country  Study design Patient population N; Mean age (SD); %male % n with AF OAT Sampling Data collection Results Knowledge category: % patients giving correct answers i) Quantitative studies Desteghe,2016104 Belgium Cross-sectional 466; 71.1 ± 10.0; 61.2% Male 100% VKA: 14.4% DOACs:56.9% Antiplatelets: 7.9% Convenience Self-administered survey Reason for taking OAT: 76% AF increases the risk of stroke:66% OAT-drug interaction: 56% The term INR and its interpretation: 42% OAT increases risk of bleeding: 65% AF is the name of diagnosis: 71% AF is a cardiac rhythm abnormality: 73% AF may be asymptomatic:31% Symptoms of AF: 73% What to do in case of a missed dose: 21% (VKA patients), 43% (DOAC patients) Amara, 201591 France, Denmark, Sweden, Spain, Norway, Germany, UK,and Italy. Cross-sectional 1147;  66 ± 13 years 54% Male 100% VKA: 67% DOACs: 33% Combination: 17.9% Convenience Internet survey Reason for taking OAT: 90% OAT-drug interaction:23% OAT-food interaction: 19% Therapeutic INR: 91% OAT increases risk of bleeding:80% Need for liver function test:12% Need for kidney function test: 21% Frankel, 201595 USA Cross-sectional 499; 62±NA; 49% Male 100% NA Convenience Mixed: Online/telephone survey Reason for taking OAT:63% Symptoms of stroke:64% Women’s higher risk of stroke: 23% Definition of ischemic stroke:42% Higher mortality rate of AF-related strokes:68%  Chenot, 201493 Gerrmany  Baseline survey of an RCT 345; 74 (68–78) MEDIAN(IQR) 53% Male  70% VKA:100%   Reason for taking OAT:95% Duration of treatment: 72% OAT-drug interactions:20% OAT-food interaction: 31% Therapeutic INR:46% Lee, 2012105 Hong Kong Cross-sectional 114; 68% less than 65 years old 56% Male 61.4% VKA: 100% Convenience Self-administered survey AF increases risk of stroke: 33% OAT-drug interaction: 42% OAT-food interaction: 48% Therapeutic INR: 36% The term INR and its interpretation: 37% Current INR: 32% AF is the name of diagnosis: 0% AF is a cardiac rhythm abnormality: 25% AF has risk of recurrence: 30% AF can predispose to heart failure: 10% Symptoms of AF: 50%  Baker, 201192 USA Cross-sectional 185; 68±10.1 years 96.2% Male 61.1% VKA: 100% Convenience Self-administered survey  Duration of treatment:66% OAT-food interaction: 33% OAT-alcohol interaction: 62% OAT side effects: 65% Understanding what happens during over-dosage: 67%        19  McCabe, 201152 USA Descriptive cross- sectional 207; 64.2 ± 12.3; 56% Male 100% VKA: 56% Antiplatelet: 26% None: 18% Convenience Self-administered questionnaire Symptoms most commonly attributed to AF:  Fatigue: 81%; Dyspnea:65% Loss of strength:52%; dizziness: 51%; sleep problems: 42%; pain:25%.  Patient’s perception of causes of AF: Stress: 65%; Ageing: 61%; heredity: 45%; my behavior: 28%; overwork: 25%; chance or bad luck: 28%; family problems: 15%; emotional state: 16%; personality: 17%; Diet: 29% Nedeloiu,2011101 Romania Cross-sectional 126; 65.5 ± NA 55.6% Male 47.6% VKA: 100% Convenience Self-administered questionnaire  Reason for taking OAT: 22% Duration of treatment: 0% Mechanism of action of OAT: 86% OAT-drug interaction: 57% What happens during overdosage:66% The need to avoid IM injections: 60% Cook-Campbell, 201094 USA Cross-sectional 36;  79 ±NA 42% Male 67% VKA: 100% Convenience Telephone interview Reason for taking OAT:93% Meaning of the term “blood thinner”: 92% Vitamin K content in food: 36% Therapeutic INR: 42% Current INR: 25% Understanding what happens during overdosage:61% Clarkesmith, 2010103 USA Cross-sectional 100; 68± 10 62% Male 100% VKA: 100% Random Interview  OAT-drug interaction:72% OAT-food interaction: 68% Therapeutic INR: 78% Current INR: 76% McCabe, 2008100 USA Cross-sectional 100; 67.22 ± 13.23 49% Male 100% VKA: 100% Convenience Telephone interview  Reason for taking OAT: 59% AF increases the risk of stroke:46% Knows name of the OAT they are on: 85% OAT-drug interaction: 48% OAT-food interaction:72% Therapeutic INR: 76% Current INR: 96% Signs of emergency situations: 54% Symptoms of stroke: 32% Symptoms of AF: 25% Koponen, 200796 Finland Cross-sectional 200; 64±NA 60% Male 100% VKA:100% Convenience Self-administered survey Reason for taking OAT:74% AF increases the risk of stroke: 75% Therapeutic INR: 64% OAT increases the risk of bleeding:82% AF has risk of recurrence: 73% AF may be asymptomatic: 44% AF can be detected by regularly taking the pulse rate: 92% Lip, 200797 France, Germany, Italy, Norway, Spain, Sweden & the UK Cross-sectional 711; 68±NA 58% Male 100% VKA: 100% Mixed Interview OAT-drug interaction: 16% OAT-food interaction: 43% OAT-alcohol interaction: 43%  Rewiuk,2007101 Poland Cross-sectional 61; 70.2 ± 10.5 47.5% Male 100% VKA: 100% NA Mixed Reason for taking OAT:30% Signs of emergency situations: 59% OAT increases risk of bleeding: 74% OAT-alcohol interaction: 84% OAT-food interaction: 7% Understand the term “blood thinner”: 69% Mechanism of action of OAT: 93% Know the name of the OAT they are on: 69% The need to avoid IM injections: 13%  20  Lane, 200528 UK interventional (non-randomized) 93; 67.3±11.6 50.5% Male 100% VKA: 72% Antiplatelet: 22% None:6% Convenience Interviewer administered survey Reason for taking OAT: 57% AF increases the risk of stroke: 54% Mechanism of action OAT: 19% OAT-drug interaction: 37% Therapeutic INR: 56% OAT increases risk of bleeding: 40% Aware of diagnosis: 49% AF is a cardiac rhythm abnormality: 80% St-louis, 2003106 Canada Cross-sectional 100; 74.4±5.17; 58% Male 100% VKA: 100% Convenience Mixed: Face to face or telephone interview Reason for taking OAT: 38% Mechanism of action of OAT: 87% OAT-drug interaction: 71% OAT-food interaction: 53% Effect of smoking on INR: 18% Vitamin K content of food: 48% OAT increases risk of bleeding: 67% Lip, 2002 UK Cross-sectional 119; 69±9; 64.7% Male 100% VKA: 100% Convenience Interviewer administered survey Reason for taking OAT: 52% Awareness of diagnosis: 63% OAT increases risk of bleeding:45% Mechanism of action of OAT:65% AF increases the risk of stroke: 47% ii) Qualitative studies Altiok, 201590 Turkey Qualitative (Phenomological analysis) 32; 66.90±7.90 50%Male 100% VKA: 100% Convenience Semi-structured interview   As a result of the content analysis, four main themes and 15 subthemes were identified: (1)patient's mental status regarding the disease, (2) patient's social status regarding the disease, (3) patient's physical condition regarding the disease, and (4) disease management and coping with the disease.    Extracted data: Out of the 32 patients interviewed, half believed that the disease came from God. The vast majority of patients in the study stated that their information about nutrition was insufficient. Their doctors told them not to eat green leafy vegetables, but they did not know the reason for that. more than half of the patients in their study while taking warfarin regularly, did not have sufficient information about warfarin and were not informed of the drug's benefits or adverse effects.  McCabe, 201599 USA Qualitative descriptive (content analysis) 41; 64.3± 10.1; 51.2 % Male 100% NA Convenience Interview  Four themes were identified: (1) misinterpreting symptoms; (2) discovering the meaning of atrial fibrillation; (3) facing fears, uncertainty, and moving to acceptance; and (4) receiving validation and reassurance. Extracted data: 27 (66%) participants reported that they had heard of the term ‘atrial fibrillation,’ but few knew the symptoms and significance of atrial fibrillation. Participants readily attributed AF symptoms to other problems or other previously experienced illnesses. Some participants attributed their symptoms to non-illness related causes such as ageing, excess work demands, physical deconditioning or stress, and thus did not see a reason to consult a provider for evaluation of the symptoms. Instead, self-care strategies such as rest, taking more time to accomplish tasks, avoiding particular activities or exercising harder to ‘get back into shape’ were used to manage symptoms.    21  Dantas, 2004107 Canada Qualitative descriptive (content analysis) 21; 73.95; 57.14% Male 100% VKA: 100% Convenience Interview Four main themes were identified: (1) decision-making, (2) knowledge/education, (3) impact, and (4) satisfaction. Extracted data: (P3): I don't really know what these different pills do for me. (P12): I'm assuming these people know what they're doing. They're not doing this for nothing. They must have good reasons, and they tell me, "Hang on there, you're doing all right. Keep it up." So I do. I don't question them. Very little, if any. I probably wouldn't know what they were talking about if they started to explain it all, and what's the point of that?  (P17) It [warfarin] makes the blood sticky, I believe, or thins it. I really don't know. Oh, I couldn't care less, just as long as it keeps me alive. (P21): I hope it's [warfarin] keeping everything under control... Well, the stroke that I had, I don't feel sick, I don't have any pain, or anything.   Figure 2: Number of publications included from each continent.   Figure 3: Data collection methods used in the included studies.  012345678910Asia Europe N.America S.America Africa OceaniaNumber of Publications included from each continent 024681012Survey Interview Mixed UnknownData collection methods utilized in the included studies22   Figure 4: Number of participants taking different OATs.  2.3.2: Quality of the included studies Table 2: Quality assessment results. Study Quality score Missing criteria STROBE Amara, 201591 57% 1a, 9, 12c, 13c, 14b, 19, 20, 21, 22 Baker, 201192 88% 1a, 9, 22 Chenot, 2014 93% 12c, 12d Cook-Campbell, 201094 68% 1a, 1b, 3, 9, 12c, 13c, 14b, 22 Desteghe,2016104 83% 10, 12d, 13b, 13c Frankel, 201595 68% 1a, 9, 10, 12c, 13a, 13b, 13c, 14b Koponen, 200796 89% 1a, 10, 13c Lane, 200528 76% 1a, 10, 12c, 12d, 13c, 14b Lip, 200797 73% 1a, 10, 12c, 12d, 13a, 13b, 13c Lip, 200298 77% 9, 10, 12c, 12d, 13c, 14b McCabe, 201152 80% 1a, 9, 10, 12c, 14b McCabe, 2008100 85% 1a, 9, 10, 13c Nedeloiu,2011101 48 % 1a, 1b, 9, 10, 12c, 12d, 13a, 13b, 13c, 14b, 19, 20, 21, 22 Rewiuk,2007101 64% 13a, 13b, 13c, 14b, 22 Smith, 2010103 80% 1a, 9, 10, 12d, 22 St-louis, 2003106 69% 10, 12c, 12d, 13a, 13b, 13c, 14b, 21, 22 Lee, 2012105 74% 10, 12c, 12d, 13a, 13b, 13c COREQ Dantas, 2004107 58% 5, 8, 9, 13, 17, 18, 20, 21, 23, 25, 26, 27, 28 McCabe, 201599 61% 3,5,8, 9, 13, 15, 22, 23, 25, 26, 28, 32 Altiok, 201590 43% 1, 2, 3, 4, 5, 6, 7, 8, 9, 13, 15, 18, 20, 23, 26, 27, 28  0500100015002000250030003500Vitamin KAntagonistDirect OralAnticoagulantsAntiplatelets CombinationOATUnknown No medicationNumber of participants taking different OATs23   Figure 5: Quality assessment results of the included studies.  2.3.3: What is known about patients’ knowledge? Eight studies28, 92, 93, 96, 98, 100, 104, 105 reported on patient’s knowledge of AF, two studies95, 100 assessed AF patient’s knowledge of stroke and fifteen studies28, 91-95, 97, 98, 100-107 assessed patient’s knowledge of their anti-thrombotic medications. I did not find any studies that assessed patients’ knowledge around the medications used in AF management for rate and rhythm control such as beta blockers, calcium channel blockers, digoxin or other anti-arrhythmics. Moreover, most of the studies were done on patients taking warfarin, only four studies28, 52, 91, 104 included patients on DOACs or antiplatelets. Therefore, very little is known about the DOAC- or anti-platelet-specific knowledge gaps among AF patients.  A majority of our current evidence on AF patients’ knowledge comes from North America and Europe, very little is known about AF patients’ knowledge in other regions. Only two studies were done in Asia and there were no studies done on AF patients living in Africa, South America and Oceania. Together, these regions make up over 80% of the world population.108   10%65%25%Quality assessment results of the included studiesLow quality (<50% )Moderate quality (50%-80%)High quality (>80%)24  The following medication-related knowledge areas were not assessed in any of the included studies: the effect of non-adherence on INR; the differences between minor and major bleeding; patients’ knowledge around the effectiveness of the OAT in preventing stroke, brand versus generic names of OATs; patients’ knowledge around the relative risk of bleeding among OATs; knowledge of attributes of different OAT medications; and patients’ knowledge of their own medication (color, shape and current dose). Most of the above have been studied in studies assessing OAT knowledge of patients who take them for other indications such as venous thrombo-embolism. With regards to knowledge of the disease, the following were not assessed in any of the included studies: patient’s knowledge on the differences of ischemic and hemorrhagic stroke; knowledge of the physical, mental, emotional and financial consequences of stroke; and knowledge of ones’ own CHADS-VASc and HAS-BLED score.   2.3.4: What are patients’ knowledge gaps and misconceptions? A total of 27 knowledge categories were built based on the extracted data. Of these 27 knowledge categories, sixteen were knowledge categories around medications and eleven were around AF and stroke. An independent meta-analysis was conducted for each of these 27 knowledge categories to calculate the pooled mean proportion of patients demonstrating knowledge of them (appendix).   The heterogeneity among studies was very significant. The I2 was below 80% for only four of the 27 knowledge categories. The sources of heterogeneity are discussed in greater detail later in the discussion section of this chapter.  While high I2 indicates that data is not combinable, I still 25  summarized the pooled mean and standard deviation for the 27 knowledge categories in figures 6 and 7 to provide a summary of the current state of patients’ knowledge.    Moreover, the qualitative data reported was too limited to allow for any form of formal qualitative analysis to be conducted. Qualitative data, as well as information that could not be summarized in the meta-analysis (e.g. information on the common incorrect answers given) were summarized narratively.  i) Knowledge gaps around AF and stroke: Only a few knowledge categories were AF- and stroke-related, due to the lack of studies assessing AF patients’ knowledge of these two conditions. Nevertheless, the knowledge gaps identified around AF and stroke are highlighted in red in figure 6. Gaps were found in the following knowledge categories: AF can be asymptomatic; AF can predispose to heart failure(n=1); women are at a higher risk of stroke (n=1); the definition of ischemic stroke (n=1), and patients’ awareness of their diagnosis. The mean proportion of the people who knew the link between AF and stroke, and that AF can recur was also just over 50% (Figure 6).   26   Figure 6: Patients’ knowledge of atrial fibrillation and stroke.   Qualitative studies reported that patients usually don’t know about the loss of coordination between atria and ventricle that occurs in AF.100 They are also not aware of the broad range of AF symptoms.96, 100  Palpitation was the most commonly known symptom of AF to patients.96, 100 The poor knowledge around the less commonly experienced AF symptoms however results in patients associating their symptoms to other illnesses or causes.99 Some participants for example, were reported to associate their symptoms of dyspnea and fatigue to non-illness based causes such as: ageing; excess work demands; physical deconditioning or stress, and therefore employing99 strategies such as: resting; taking more time to accomplish tasks; avoiding certain activities; or exercising to manage the symptoms, instead of consulting a care provider to evaluate them.99  Lack of knowledge about the underlying causes of AF was also reported by three studies.52, 99, 105 Altiok et al. reported that of the 32 patients interviewed, half believed AF came from God.90 27  According to McCabe et al., the proportion of people agreeing to the following as the cause of their AF, despite lack of evidence in the literature, was as follows: patient’s own behavior: 28%; overworking: 25%; family problems: 15%; emotional state: 16%; personality: 17%; and diet: 29%.52  ii) Knowledge gaps around medications A majority of the patients knew the name of their OAT, understood the term “blood thinner” and demonstrated good knowledge of the mechanism of stroke prevention by OATs, in simple terms (thinning blood to prevent clot).  Knowledge gaps were identified, as highlighted in red in figure 7, in the following areas: OAT-drug interactions; OAT-food interactions; vitamin K content of foods; the term “INR” and its interpretation; and the required actions in case of a missed dose.    Figure 7: AF patient's knowledge of OAT medications.   28  In the study by Rewiuk et al. only 31% named acetylsalicylic acid (aspirin®) as a drug that interacts with their OAT. The study by Smith et al. was the only one that assessed patient’s knowledge of OAT-supplement interaction, only one third of the patients knew that vitamins interact with warfarin and only 48% knew about potential interactions with herbal supplements. However, 44% of the patients said they review the product label on supplements to find out about the ingredients before use.103   With regards to knowledge around food-OAT interaction (pooled mean of proportion correct answers=42%), Smith et al. reported that 9% of patients said vitamin K is not obtained from food, and another 8% were unsure which food contains vitamin K.103 Cook-Campbell et al. reported that while participants could identify at least one food example that contains vitamin K, many had a difficult time coming up with three examples.94 Altiok et al. who interviewed 32 patients, reported that a majority of patients in the study reported poor confidence in their knowledge around the dietary restrictions of warfarin therapy. They had been advised by their doctors to avoid green leafy vegetables, but they did not know the rationale behind this advice.90 Baker et al. used the anticoagulation knowledge assessment (AKA) questionnaire and reported that the questions most commonly left unanswered were related to dietary changes. Moreover, in one of the dietary restrictions related questions, 59 (32%) patients chose the option indicating that green leafy vegetables should be removed from their diet completely instead of the choice for consistency in vitamin K consumption. In another commonly missed question that also addressed dietary concerns, 63 (34%) patients picked orange juice as the agent that can decrease the anticoagulant effect of warfarin. This is probably due to confusion over other juices, such as cranberry and grapefruit, which can impact the effectiveness of warfarin.92 A knowledge gap was 29  also reported by the studies in understanding the rationale for OAT therapy. While a majority of the patients could state the general reason for taking OATs, such as “to thin blood”, many failed to understand the specific reason for taking OAT, that is, to prevent stroke.91, 97, 100 Patients have also been reported to sometimes associate their OAT therapy with treatment of arrhythmia,91, 97, 102prevention of heart failure97, and prevention of myocardial infarction.97, 102   The results of my review indicated that patients have a good knowledge of bleeding as a side effect of OAT (pooled mean proportion of correct answers=65%).  Both Rewiuk et al. and Nedeliou et al. however reported that the number of participants who recognized melena and black feces as emergency situations was more than those who knew the signs of over-dosage or knew that the consequences of OAT therapy include major bleeding. It seems that while these concepts were understood by patients separately, they had difficulty making the link between OAT over-dosage, bleeding, and melena.101, 102    2.4: Discussion   Overall there were limited number of studies on most of the knowledge categories. There was no data on knowledge around rate and rhythm medications and very limited data on knowledge around stroke. Such information is available for non-AF patients who have had a stroke before,109, 110 but this patient population did not meet our inclusion criteria. One knowledge gap for which there was good evidence, was the OAT-drug interaction with over eleven studies reporting data on it (total participants=3338). The findings of this literature review regarding poor knowledge of OAT-drug interaction are in line with that of other studies that assessed it in non-AF patients. Taylor et al.(n=50) who assessed OAT medication knowledge in patients with 30  venous thrombosis, heart surgery and stroke, reported that from a list of eleven over-the-counter medications, only 14% of the patients were able to identify more than three of the six harmful agents which could adversely affect anticoagulation, and 22% mistakenly named one or more of the safe agents as harmful.111 Similar results were reported by Tang et al. who studied 122 patients taking OAT for AF, valve replacement and other indications, of whom only 30% demonstrated knowledge of drug interactions.84   Another well-supported knowledge category was OAT-food interaction which was identified as a knowledge gap specifically relevant to patients on warfarin (9 studies, total participant=2863). My review suggests that the issue lies in identifying the food sources of vitamin K rather than not knowing about the dietary restrictions of warfarin. The ability to identify vegetables rich in vitamin K is extremely important as it will: 1) ensure less fluctuations in the INR (and hence better stroke prevention); 2) improve patients’ self-management skills; and 3) prevent intentional non-adherence secondary to avoidable misconceptions.    One point to remember is that my initial threshold for classifying a knowledge category as knowledge gap was arbitrary. Many more of the knowledge categories would have been identified as knowledge gaps had I picked a higher threshold. Moreover, while many of knowledge categories had their mean pooled proportion correct answers above the threshold, the lower limit of their confidence level fell well below the threshold.  These results indicate that much work is to be done in educating AF patients by developing effective education programs that can achieve knowledge improvement and retention.   31  Patient education is the first step towards empowering patients, achieving shared decision making, and finally, down the road, with the help of other interventions and strategies, achieving health behavior changes such as adherence improvement. The results of this literature review are however not adequate to guide the design of AF education programs. The high heterogeneity among the included studies also limited my ability to make definitive statements about patients’ knowledge gaps. What the results of this review indicate though, is that there certainly is more room for improvement in patients’ knowledge of AF and its management.  2.4.1: Limitations of the review The summarization of data was greatly hindered by the differences in the way questions were phrased to assess patients’ knowledge. For example, patient knowledge on alcohol-OAT interaction was assessed in some studies by asking patients a direct question with a yes/no answer, while in some others, patients were asked about the number of daily drink consumption that was safe. Another source of heterogeneity in data analysis and reporting was the differences among studies in the minimum criteria to pass as “knowledgeable”. When assessing patient’s knowledge on the rationale for OAT therapy, for example, some authors considered answers such as “blood thinning” or “to thin blood” as accurate and adequate to pass as knowledgeable, while in other studies this was considered insufficient and patients were not categorized as knowledgeable unless they specifically mentioned “stroke prevention” as a rationale for OAT therapy. In a majority of the studies, however, such details were not reported and consequently my results are influenced in unknown ways by this variability. These data collection and reporting differences between the included studies, among many other sources of clinical heterogeneity (different education background of the patients, or possible differing AF-specific 32  education received by participants), translated into statistical heterogeneity (very high I2 for most of the knowledge categories), hindering the meta-analysis and reducing the strength of the evidence. Meta-analysis was however still performed for two reasons: 1) my initial goal was not to calculate and report pooled mean proportion correct answers for each knowledge category, but to identify areas of concern; 2) this method allowed me to illustrate the range of the proportion of correct answers reported by the included studies, while accounting for the vast differences between the study sample sizes.  Only eight studies52, 91, 92, 96, 100, 103-105  used questionnaires that had gone through some sort of pilot testing or validation. The use of non-validated, self-developed questionnaires not only reduces the quality of data collection, it also affects the uniformity of data reporting across different studies, increasing the heterogeneity.  The generalizability of the results to AF patients in Asia, Africa, South America, and Oceana is limited due the small number of (or lack of) studies in these regions. The collective number of AF cases in these continents is certainly more than 50% of the global AF cases. Therefore, the picture I currently have on knowledge gaps of AF patients is extremely incomplete. Considering that a majority of the included studies in this literature review were conducted in developed countries, it is not recommended to generalize its results to developing countries.  I, however, speculate that the situation is even worse in developing countries given their less developed healthcare infrastructure.  33  Few of the included studies28, 52, 95, 98, 103, 104 reported the education level of their participants. Different classification of education degrees as well as limitations in the data reported prevented interpretation of the results in context of patients’ education level- an important covariate in patients’ knowledge. The same challenge was faced when summarizing the AF-specific education received by the participants.   A majority of the study participants were on warfarin. The heavy focus on warfarin education and the lack of studies on patients taking DOACS is partly due to the complex dosing regimen of warfarin which calls for more education and self-management skill development than the DOACs. Another reason is perhaps because DOACs are relatively new and therefore the overall pool of patients who take them is smaller than that of warfarin.  2.4.2: Future directions Future quantitative studies assessing AF patients’ knowledge gaps should use validated medication- and disease- specific knowledge assessment questionnaires such as: the AKA questionnaire112 and the Jessa Atrial Fibrillation Knowledge Questionnaire (JAKQ).104 They should also ensure inclusion of patients on DOACs. The results of this review showed that most literature assessing AF patients’ knowledge gaps have focused on patients taking warfarin.13, 113-124 65, 90, 92, 94, 96-98, 100-102, 105, 106 Very little is known about education needs of AF patients who are on DOACs and there are no studies on AF patients’ knowledge around rate and rhythm control medications.91, 104 With the increasing use of DOACs among AF patients, there is a need for studies that are designed to assess patients’ DOAC-specific knowledge gaps and misconceptions. 34  Each DOAC is unique in a way and it is crucial for patients to understand the attributes of the DOAC they are taking. Moreover, the knowledge areas that need to be assessed in patients taking DOAC are different than that of warfarin. Knowledge on INR testing is for example important for patients on warfarin while it is irrelevant to those taking DOACs.  The knowledge gaps identified in this study are not enough to inform and guide the design of effective, evidence-based education programs. Information processing and retention are complex processes.73 The lack of consensus on the best educational approach to AF, as concluded by the systematic review of AF education programs64, 69, suggests that we need to take a step further than identifying knowledge gaps and try to understand the reasons behind the identified knowledge gaps, the commonly used information sources, patients’ preferred education style, and patients’ learning barriers (beliefs, social norms, language barriers, lack of interest, lack of motivation) which calls for more qualitative research on the topic. A majority of the literature conducted in this area are quantitative, with only three qualitative studies.75, 90, 99, 107 Quantitative assessment of patients’ knowledge gaps may be helpful, initially, to identify the overall areas of knowledge gap, but they fall short in informing us about patients’ misconceptions, and other factors affecting their learning and education needs.  I also call for studies to assess AF patient knowledge among Asian, African, Oceanian and South American populations. By 2050 the number of individuals over the age of 60 is predicted to reach 330 million in India, 220 million in Africa and 460 million in China.125, 126 126Consequently, AF is likely to become a major cause of morbidity in these regions and 35  assessment of patients’ knowledge gaps is crucial to improving patient education strategies and ultimately adherence to therapy.   Future studies should specifically assess stroke-related knowledge in AF patients due to it being highly relevant to this patient population. Evaluating AF patients’ knowledge of stroke is very important because appreciation of the relevance of stroke to AF, and awareness of ones’ own risk of stroke (accurate perception of susceptibility to stroke), along with a correct understanding of the financial, mental, physical and social consequences of stroke are necessary to ensure understanding of the consequences of non-adherence to SPAF.   2.5: Conclusion I found that very little is known about AF patients’ knowledge around stroke and their rate and rhythm medications. I also identified literature gaps on knowledge of AF patients living in Asian, African, South American and Oceanian countries. Several knowledge gaps were identified around the anticoagulants such as: OAT-drug interaction; OAT-food interaction; INR and its interpretation; and knowledge around the vitamin K content of food. The results of this review indicate that there certainly is more room for improvement in patients’ knowledge of AF and its management.      36  Chapter 3: Assessment of clinicians’ views on AF patients’ education needs  3.1: Introduction As described in previous chapters, there is lack of qualitative studies assessing AF patients’ knowledge gaps and misconceptions, and lack of both quantitative and qualitative educational needs assessment among this patient population, to guide the development of evidence-based education initiatives. Patients’ however have limited ability to accurately self-assess their own needs. It is therefore crucial to obtain clinicians’ views on patients’ education needs.  “Clinician” was defined as: “a health professional, such as physicians, psychologist, or nurse, who is directly involved in patient care, as distinguished from one who does only research or administrative work”.127 The overall purpose of this chapter is to offer an insight into AF patients’ education needs, from clinicians’ point of view. The reporting of this qualitative study conforms to the Standards for Reporting Qualitative Research (SRQR)128 and the Consolidated Criteria for Reporting Qualitative Research (COREQ)88.   3.2: Methods  3.2.1: Study design Qualitative descriptive research utilizing semi-structured interviews.    3.2.2: Setting In British Columbia (BC), AF patients are usually managed by their general practitioner. Those patients whose symptoms cannot be managed by a general practitioner are referred to AF 37  specialized clinics. At present, there are five AF clinics in BC. Approximately 30% of AF patients in BC are referred to these clinics. The clinics’ staff include cardiologists, nurses, nurse practitioners, pharmacists and in some clinics, dieticians. The clinics aim to improve the quality of life of AF patients through the provision of the following services: i) consultation with a cardiologist, registered nurse and/or pharmacist to develop an individualized treatment plan; ii) diagnostic tests and procedures iii) telephone follow ups on care plan and therapy management; iv) counselling; v) referrals to other programs (such as weight management programs) as required, and vi) group education sessions on AF and its management.   The education offered at these five AF specialized clinics uses standardized education materials collaboratively developed by the clinics. The materials are normally presented to small groups of patients (20-25) by a nurse or pharmacist in the form of a live presentation using power point slides several weeks before their first clinic visit. The education sessions last for about an hour and are followed by a question and answer period. Participants for this study were recruited from the AF-specialized clinics at the Vancouver General Hospital and the Royal Columbian hospital in Vancouver, BC.   3.2.3: Sampling strategy  Purposive sampling was utilized. Participants were recruited based on their clinical role (pharmacist, cardiologist, nurse practitioners and registered nurses). In purposive sampling participants are sampled for the information they are likely to yield. Heterogeneity was sought in clinical role because this characteristic was considered a good source of information to enhance the breadth of the data collected on clinicians’ views on the subject, considering that each 38  clinician meets with the patient at different stages of their care, and gets to assess their education needs from a different perspective.  Any clinician who had been involved in the provision of care to AF patients for at least a year was eligible to participate. An invitation letter was given to the potential participants who met the inclusion criteria. I invited both clinicians who were currently practicing at the BC AF-specialized clinics, and those who worked in research, academia or non-AF specialized clinics but were formerly involved in providing care to AF patients for more than a year. The invitation letter summarized the research objectives and procedure. Once a clinician expressed interest in participating, they were asked to provide a written consent form. Participants could take as long as they wanted to read the consent form and ask questions. After giving consent, participants were asked for demographic data and whether they preferred to participate in the interview, at the clinic or over the phone.  Participant recruitment started in September 2017 and continued until the point of saturation, whereby the recruitment of the last two participants was considered to not have led to new parent codes, or shed any further light on the issue under investigation, as agreed by at least two researchers (SS and PL).129   3.2.4: Data collection  The interview guide for clinicians consisted of the following core questions: i) what are patients’ frequently asked questions? ii) what are clinician’s experiences in teaching AF patients and their current strategies? and iii) what are clinicians’ suggestions and advice for educating AF patients. 39  The core questions in the interview guide were followed by many associated questions. All interviews were conducted by me. The interviews were conducted in English, in a private room or over the phone, without the presence of any non-participants. Each interview lasted approximately 30 minutes.   3.2.5: Data processing Audiotapes were used during the interviews. Field notes were also taken using pen and paper. Transcripts were generated within three days of conducting the interview to produce a verbatim textual record of the interview.130 The audiotape files were given an identification code including a letter representing the participants’ role (P for pharmacist, N for nurse, C for cardiologist), followed by a number. The transcripts were contained in Microsoft Word files named after the audio file identification codes. The transcripts were not returned to participants for comments and/or corrections.   3.2.6: Data analysis  The analysis of the data was iterative, occurring as interviews proceeded. The interview guide was revised frequently based on the emerging data, for subsequent interviews. The data collected were analyzed through inductive qualitative thematic analysis using the NVivo qualitative data analysis software® (QSR International Pty Ltd. Version 11).131 Braun et al. described inductive analysis as “a process of coding the data without trying to fit it into pre-existing coding frame”.132 This approach of data analysis was chosen because it produces a richer description of the data, which is desirable when there is little prior knowledge on the topic, as was the case.   40  The process of data analysis followed the steps recommended by Braun et al132 as follows: 1) data immersion: the interviews were transcribed by the same person who conducted them. Transcript were then read and re-read several times before initiating data analysis; 2) code generation: this was a multistep process, transcripts were first free-coded, line by line (referred to as “child codes” in the code book, appendix). The sentences with the same code were reviewed to ensure consistency of interpretation. Individual extracts of data were coded with as many different “codes” as they fit into, as relevant; 3) searching for themes: homogeneity and heterogeneity between the codes were assessed to summarize them under categories and then identify themes. Themes were defined as “something important about the data in relation to the research question, and represents some level of patterned response or meaning within the data set”132;4) reviewing themes: internal homogeneity and external heterogeneity of the themes were assessed. In other words, meaningful coherence of data within themes, and clear and identifiable distinction between themes was ensured; 5) defining and refining themes: The data under each theme was organized into a coherent narrative that reflected the “essence” of each theme.132 A code book was produced to document the data analysis steps, and the trail of decisions made. The themes were illustrated using a thematic map which visually represents the coherence yet distinctiveness of the emerged themes.132   3.3: Results After interviewing eleven clinicians, two researchers (SS and PL) reached a consensus that saturation had been reached. As illustrated in table 3, 18.2% of the clinician participants were male, with a mean age of 47.6 (SD11.1) years. The mean interview time was 23.0 (SD9.4) 41  minutes. Clinician participants had an average of thirteen years’ experience caring for AF patients. All clinicians consented to being audio-recorded.  Table 3: Characteristics of the clinician participants. ID Role Sex Primary site of practice Number of years of experience with AF patients Ph1 Pharmacist F Site 1 6 Ph2 Pharmacist F Site 2 7 Ph3 Pharmacist M Site 3 3 NP1 Nurse practitioner  F Site 4 5 NP2 Nurse practitioner F Site 5 5 NP3 Nurse practitioner F Site 1 35 RN1 Registered Nurse F Site 5 10 RN2 Registered Nurse F Site 1 30 RN3 Registered Nurse F Site 1 15 RN4 Registered Nurse F Site 1 15 Ca1 Cardiologist. M Site 6 10  The codes given to every line of the interviews (child codes), were summarized under parent codes. Parent codes were then grouped together under the following categories: i) knowledge gaps; ii) misconceptions; iii) stroke and bleeding risk communication; iv) patients’ information seeking behavior; v) patients’ emotional education needs; vi) risk communication style preferences; vii) suggestions for the content of an AF education program; viii) suggestions for the design and delivery of an AF education program; and ix) patient testimonials. These categories lead to the emergence of three themes, as illustrated in the clinician code book in the appendix.   The rest of this chapter summarizes the themes that emerged in the clinician interviews, along with exemplary quotations (verbatim). The emerged themes are also illustrated in the thematic map in figure 8. 42   Figure 8: Thematic map of clinician results.   Theme 1: Patients’ knowledge gaps and misconceptions i) Perceived knowledge gaps Clinicians identified several knowledge gaps among AF patients with regards to their condition. Patients were reported to confuse heart attack with stroke, and AF with heart attack. Patients also often believe that their palpitations can lead to a heart attack and ultimately death. Other AF-related knowledge gaps among patients identified by clinicians were knowledge gaps around AF triggers and self-management, which seemed to be intertwined. Patients were reported to always be looking for a “reason” or as clinicians refer to it, trigger, for their AF episodes. Not having a 43  complete knowledge of the AF triggers, patients tend to draw linkages between many different things and their episodes. A very common example brought up was linking activities of daily living (exercising, laughing) or food, to episodes of AF or to fluctuations in INR, when there is no evidence on their associations in the literature.  “Oh they make very strange assumptions, you know…yea…I….you know….it’s…I don’t know… a chocolate bar on Tuesday and my INR was 3 on Friday so therefore that chocolate bar changed my INR or you know….just weird, weird links between INR or AF episodes, I mean funny, we all have weird stories from patients of funny things that they think were triggers, you know I had friends over and I was laughing a lot so I decided that when I laugh too much then I have AF…”  Another area of knowledge gap reported by clinicians was around self-management. Clinicians shared stories about patients who, after diagnosis, stopped engaging in activities they enjoyed such as going on vacation or exercising, despite clinicians’ assurance that they can continue living as usual. This, according to the clinicians, was mostly due to the fear of precipitating an episode, which partly stems from lack of knowledge around AF triggers and also patients’ lack of confidence in their AF self-management skills.    Patients were also reported to have difficulty recognizing “emergency situations” and knowing when a visit to the emergency department is warranted. Pharmacists at the clinic - whose patient care responsibilities also involves answering clinic patients’ questions on the phone- stated that one of the common scenarios they encounter involves a patient experiencing a minor bleeding or an AF episode and calling to ask if they should rush to the emergency department.  “I think that…so…self-manage symptoms and self-managing … so when they have symptoms…whether they can manage it by themselves or whether they need to go to the hospital…they get education around that but that’s the 44  recurring question I get from the patients. That is just …how do I manage...I don’t want to use the healthcare system but I...erm…often times do …especially in rural communities I do, because my physicians tell me to use it, to use the ED[emergency department], because I’m not always certain if it’s doing damage to my heart if I’m…if I don’t get help to get it corrected or reversed. So, I think for those patients it’s a really big need.”  With regards to blood thinners, clinicians reported that patients tend to overestimate the bleeding risk and have difficulty weighting the risks of blood thinners against their benefits. Clinicians also pointed out that while patients may have an understanding of certain concepts related to the management of their condition such as “INR testing”, “CHADS2” score and risk of stroke, this does not necessarily mean that they understand how the concepts link together. Patients find it difficult to make linkages between low INR score (and hence higher blood coagulability), and high CHADS2 score (more comorbidities), to higher risk of stroke.  “…I do think that patients don’t always make the connection. So, they don’t always understand really how that INR value really is and they know they have to be in a certain number but I don’t know if they really truly make those connections between their therapeutics INR, their risk. I think some are probably on top of it but there are some patients who don’t understand all the linkages.”   ii) Misconceptions One of the most frequently mentioned patient misconception by clinicians was that AF is fatal. Patients, according to the clinicians, think of death either as a direct outcome of AF or an indirect outcome through an AF induced heart attack. This misconception was also considered by clinicians as one of the reasons behind patients’ anxiety and them limiting the activities they enjoy doing.  45  “…because they think that AF itself can kill them, those flutters, those palpitations and they panic, something is wrong with their heart and it’s going to kill them.”   A significant negative attitude from patients towards warfarin was reported by clinicians. Patients know warfarin as “rat poison” and hence have a misconception around it being poisonous, not made for humans, or in general unsafe or at least more unsafe than its counterparts (DOACs and aspirin®). The reported issue of negative attitude towards pharmaceutics was however not just confined to warfarin. Clinicians said that in general one of the frequent medication related questions they receive from patients is whether the pharmacologic blood thinners can be replaced with natural alternatives such as turmeric. Clinicians believed that the “natural is always better” misconception is the reason behind such enquiries. Patients were reported to believe that natural blood thinners do not have side effects and are effective enough to replace the pharmacologic options.  “People are willing to take every single natural sup [supplement] there is that promotes blood thinning even though there is no way to know how much blood thinning that’s going to confer and so that’s a challenge and some people who are very interested in knowing, they go to the internet to sources that they think are reliable and sure there are studies about natural products and they come back and question.”  Clinicians also discussed the stroke related misconceptions that AF patients usually have. Patients were reported to often associate their risk of stroke with how they feel. According to the clinicians, patients commonly assume a direct association between their symptom severity and their risk of stroke. They therefore believe that the absence of symptoms translates into no risk of stroke. Clinicians found this particularly worrying in patients with asymptomatic AF. 46  Theme 2: Clinicians’ experience teaching AF patients i) Stroke and bleeding risk communication Clinicians, based on their experience, identified stroke and bleeding risk communication as the most challenging aspect of teaching AF patients about their condition and its management. They find this conversation difficult because: i) it involves convincing patients to take medications that do not completely eliminate risk; ii) it requires the clinician to communicate the bleeding risks in a way that is accurate but also does not scare patients and cause intentional non-adherence; iii) such conversations are usually accompanied by technical terms and calculations such as the absolute risk reduction (ARR) or the relative risk reduction (RRR) which is not readily understood by patients or does not always interest them; and iv) there is not enough time for clinicians to have an in-depth conversation with patients.  “We don’t go through it [individualized stroke risk based on the CHADS2 scores] in the education session, we used to, but it was presented in a …it was a large table with a lot of numbers and we didn’t really know how much understanding there is. You know, your stroke risk is 2%, we didn’t know how much understanding there was on what that 2% is, do they get it?”  Clinicians revealed that they prefer to use CHADS65133 instead of the CHA2DS2-VASc criteria in their conversations with patients about their stroke risk due to its simplicity. This tool is a simplified version of the CHA2DS2-VASc, which lists patients’ comorbidities that further increase their risk of stroke (from their baseline risk imposed by AF). Patients’ individualized risk of stroke based on their score on this tool is however hardly ever communicated to them. Clinicians stated that while they, themselves, are highly guided by the percentage risk of stroke inferred from the CHADS65 score, they prefer not to communicate it to patients because of patients’ lack of interest and their inability to properly comprehend it. Some clinicians also did 47  not feel the need to quantitatively justify their decision to recommend anticoagulation to patients because the current Canadian AF guidelines recommend anticoagulation for all AF patients 65 and older, regardless of the other comorbidities listed in the CHADS65 score and their inferred increased risk of stroke.133   “We don’t necessarily talk about CHADS score as much anymore because the new Canadian guidelines made it relatively simple, in terms of, if you are over the age of 65, then you need anticoagulation. Erm…we do talk about risk factors…each risk factor that you have, increases the risk of stroke further.”  Such technical information (individualized risk of stroke; medication-specific ARR and RRR; or bleeding risk) is only communicated to patients if clinicians deem it necessary to correct misconceptions, e.g. in cases of extreme, unjustifiable fear from bleeding, poor understanding that medications’ benefit in stroke risk reduction far exceeds the risk of bleeding (for patients with higher CHADS scores), or when patients are resistant to medications because they feel healthy and do not accept that they are at higher risk of stroke.  Participants reported that they usually try to adjust the risk communication to each patients’ understanding, education level, and their level of interest in learning the technical terms. Some patients find comfort in knowing where the numbers come from and why they are at risk of stroke despite being “healthy”, while others prefer to sit back and let the doctors make the decisions for them and are not interested in the justification for the decisions. “Some people are like I hear what you say but I have heard of lawsuits in states of people dying from this and on the other hand we have had some scientists or engineers who are into numbers and want to know these. In education session we might even say that aspirin will reduce the risk of stroke by about 20% and NOACs reduce it by 2/3rd, so they can see. Usually their 48  risk, it’s discussed on a one on one basis and it kinda depends on how much the patient wants to know too. I found that some people are not interested in hearing the numbers, they are like if you ask me to take a blood thinner, I’ll take it, just give me what you think. while other people are like, why do I have to take this? I’m healthy then you kinda need to go into what their actual risk of stroke is, so we say that means for example 4 in a 100 people.”   ii) Current challenges in educating patients One of the challenges identified by clinicians in educating AF patients was the information sources they consult. Internet sources, and family and friends were reported to have been brought up by patients as their sources of information. Clinicians mentioned Google, Mayo Clinic, and blogs (specifically “afibbers.org”) as the main internet sources of information their patients consult for questions regarding their condition or medications. Clinicians expressed concern that the information offered to patients on the internet could be unreliable, anecdotal, and/or incorrect.  “Oh, I hate doctor Google, hehehe, erm… the older population will often come back with information from their friends because an older population tends to have…. friends with the same condition, so we’ll, I hear a lot of “my friend at bingo”, or…I’m making it up, but you know my friend will say something…the...err… younger people will, erm, will certainly, but they will literally Google it, they’ll, and they will end up on all sorts of weird sites, erm…and they’ll ask the different staff members as well.” “They may be using Google and using the websites and that type of things or talking to somebody like maybe another patient who can give a lot of great experiential information but maybe giving them other incorrect information and that type of thing. I think that’s another issue in education that needs to be considered.”   Other challenges mentioned were: language barrier; reaching patients who are unable to attend the clinic education sessions; teaching patients in situations where PowerPoint presentation is not 49  possible (at bedside) and provision of continuous education. Clinicians believed a standard evidence-based education program, specifically an online one, is necessary to: ensure long term medication persistence and adherence; prevent patients from referring to commercialized sources of information with conflict of interest; reduce patients’ anxiety; overcome the accessibility issues associated with classroom education; and to offer opportunities for learning in situations where teaching is difficult, such as at the bedside in the hospital.  “I think it would be great to have a standardized resource for patients to go to, that was not sort of industry sort of driven, or…erm...you know, it didn’t have conflict of interest.” “Yea, there are some patients who are just like, I’m fine, if I need it I’m gonna take it, but if you are looking at long term persistence and adherence with these medications I think it’s really important to have a good education program.” “Well I think it’s only, yea main thing is scheduling, so it’s only for people who have the time to come down, who are motivated, so it’s basically mostly for local patients and patients who have, you know, so you are probably not hitting the people who need it most in terms of the low socioeconomic status and people who live far away, so I think that’s sort of one of the main barriers to our current model where they have to physically come to the education.”   iii) Patients’ emotional education needs Clinicians discussed the anxiety that patients experience secondary to being diagnosed with AF in great depth. Clinicians listed several reasons behind patients’ anxiety, the majority of which related back to patients’ knowledge gaps and misconceptions. According to clinicians, AF patients find the unpredictability of AF very worrying as they never know when the next episode is going to be experienced. Patients were also reported to worry about the impact of AF on their life and their favorite activities, and whether their diagnosis means they must stop doing the 50  activities they enjoy. Patients’ misconceptions about the ability of AF to cause a heart attack or death was also identified by clinicians as one of the most common reasons behind their anxiety.  “…and just unpredictability …. that’s a large thing ...that AF is unpredictable, they don’t…they don’t know when to expect it, so they do have anxiety just on the uncertainty of when they might get another episode”   Clinicians felt that there is a correlation between symptom burden and anxiety. The more symptomatic the patients, the more anxious they are. They also stated that anxiety is more profound early on, when a patient is newly diagnosed, but reduces over time as patients learn more about their condition and its management. Clinicians mentioned that in their experience, education significantly reduces patients’ anxiety. Assuring patients that the condition is not fatal, will not affect their life, will not lead to a heart attack and is manageable, seems to bring down their anxiety levels. “…I think it has lots to do with symptoms, the extent of the symptoms how long they have the symptoms...some patients think it’s one of the worst things and one other patient thinks its mild. I think that’s where quite a bit of it comes, the impact… the anxiety to the extent that it’s impacting their life.” “Erm, not too often, …those patients are very, first diagnosed, that are very symptomatic have a lot of anxiety around their AF, because they think that AF itself can kill them, those flutters, those palpitations and they panic, something is wrong with their heart and it’s going to kill them. Helping them understand, palpitations is part of their AF symptoms, not everybody feels palpitations, but that that in itself isn’t a risk for patients dying.” “Well, certainly education goes a long way. Educational session and reassuring them that it is not an immediate life-threatening arrhythmia often takes away some of the anxiety, and reassuring them that, erm, there is treatment options available, both from an anticoagulant perspective and a rhythm perspective.”  51  Theme 3: Clinicians’ suggestions for an education program i) Content In terms of content, clinicians believe that, in addition to clinical information, an education program for AF patients must ensure that patients’ sources of anxiety are addressed. They suggested that to do so, the education program should emphasize that AF is not a fatal condition, does not lead to heart attack, is manageable and that AF patients can continue living their life as before. The education programs targeting AF patients should communicate the prevalence of AF to help them understand that this is a common condition, because knowing that many other people have the same condition and live a normal life can, in clinicians’ experience, help with patients’ anxiety.  “I think, just supportiveness, that this is a chronic condition, that, erm, if, if properly managed, should not impact your quality of life and your enjoyment, you know your enjoyment of the thing you enjoy,  think that, I think if you can hang your hat on that, giving them that positive….that, this is well managed, you should have a good quality of life, because I watch people when they come in and they are that anxious, and I say to them, this is not life threatening, this is a chronic condition, it seems to bring down their anxiety a little, yes you can travel, yes you can take your dog for a walk.” “This is not fatal, it’s not a heart attack, it doesn’t cause a heart attack, it’s treatable…erm… Lots of people have it, lots of people live with it…and…and…live healthy lives, err….it doesn’t necessarily have to be limiting in what you do, err… that you may not find a trigger…you know….”  An education program should clearly explain the lack of correlation between how patients feel and their risk of stroke. It was suggested that teaching patients about the spectrum of AF (from asymptomatic and paroxysmal to persistent and symptomatic) and helping them understand where they stand in this spectrum ensures that: 1) patients do not associate the intensity of their symptoms to their risk of stroke and 2) patients do not fear death when they go into AF. Moreover, clinicians believed that the education program should ensure that patients understand 52  the chronic, progressive and unpredictable nature of the condition because lack of knowledge in this area leads to unrealistic expectations for cure and ultimately disappointment.  ii) Design and delivery Questions around the design and delivery of an AF education program were focused on online education programs since classroom-setting education was already being offered at the clinics. Patients’ ability to access online education programs was a concern among the clinicians, considering that the target patients are usually the elderly. Clinicians emphasized that if an education program is to be online, it needs to be easy to locate on the internet, with all the information in one place, and few links between different components of the education program, to prevent confusion. “Erm, yea, I mean I guess, it’s gonna depend on how it’s available to people, yea obviously large part of our population is older, you know , less computer literate so the easier access to it and the less hoops they have to jump through, to get to it  you know, not to go to a site and then another link to another part  and then a link to another, just ease right to information, I think probably would be important.”  In general, clinicians had difficulty imagining what an online education program could potentially look like, and hence had difficulty giving suggestions about its design and delivery. Big font, slow animation, less words, more pictures, as well as simple and clear instructions were considered necessary to make the education program user-friendly. Half an hour was suggested as the ideal length for the education program based on clinicians’ experiences teaching patients.  53  iii) Patient Testimonials Offering patient testimonials or narratives as a component of AF education was frequently suggested by clinicians. Testimonials are stories of patients who share their experience and journey as a patient and can take the form of video, audio, or text. Clinicians believed that watching other patients talk is an effective teaching technique. They also believed that testimonials offer the patient a sense of community, reminding them that they are not alone, and that there are others out there just like them, hence reducing their anxiety.  “I think it’s helpful for patients to know that they are not the only one going through it and there is somebody out there who has the…had the experience that they are going through, it could be a number of different people cause every body’s experience is different, so if they can relate to one of them on there or something like that then that...that can be helpful.”  Different suggestions were put forward as to what patient testimonials should include, such as: i) patients talking about their emotions when first diagnosed and how their fear/anxiety subsided as they learned more about the condition and its management; ii) stories from patients who have experienced stroke secondary to nonadherence to their anticoagulants; iii) stories about patients who are living a normal life despite their AF diagnosis; iv) stories on bleeding experiences secondary to taking blood thinners and how it was managed; and v) patients talking about what they have learned over the years of living with AF. “…I think having patients who are just doing well and are on a blood thinner, haven’t had a stroke or bleed, I continue leaving my life as I would, kind of normally, you know, cause that’s what patients kinda wanna know, that they are not going to have any abnormal life and that they can continue to do what they normally would do… and even someone who’s like: oh, I noticed my nose was bleeding or I noticed this nuisance bleeding, this is what they did… 54  this is the investigations that they did and I’m still on blood thinners and I’m okay”  “Erm, you know I think the kind of people explaining, you know, when they got diagnosed how they felt, the emotions they went through, their fear, you know, but then I learned blah blah blah and I talked to my doctor and my cardiologist and I got on medications and I’m back at the gym and that I really was upset at first… I thought, you know, it was the end of the world but now I’ve realized that it can be managed and I can live with it.”  Some clinicians however, when asked about patient testimonials, expressed concern that anecdotal evidence might not be the best way to teach patients about their risk of stroke and blood thinners. They pointed out that not everybody goes through the same experience and offering testimonials might mislead the patients. For example, the nonoccurrence of stroke in someone with good adherence to their blood thinners does not translate into no strokes for other patients who take their medications as prescribed.  “Erm, well I’m just trying to think what that would look like, would you have a patient saying I have AF, and I have been on, apixaban…for….7 years and I never had a stroke and I never had a bleed, and I don’t know, because it doesn’t take away that it still might. You know what I mean, so I don’t know if the testimonials would be that helpful.”  3.4: Chapter conclusion The recruited clinicians were very experienced with AF. Drawing from this experience they provided very rich data on AF patients’ education needs. Many knowledge gaps and misconceptions were identified in this patient populations. Clinicians specifically emphasized on AF patients’ emotional appraisal of their condition and the ways in which their unjustified anxieties, mostly stemming from their knowledge gaps and misconceptions, should be addressed with education. They also offered an insight into the challenges faced when educating patients, their current teaching strategies, their own preferences for stroke and bleeding risk 55  communication. Clinicians offered many content-related recommendations for education targeting AF patients. They however had a difficult time making design- and delivery- related recommendations for online AF education programs, mostly due to their lack of experience with such programs.               56  Chapter 4: Assessment of patients’ views on their education needs  4.1: Introduction   Many quantitative studies have assessed and reported patients’ knowledge gaps. This is however not sufficient to guide the design of an effective education initiative. Educational needs assessment is essential, and the first step towards directing and shaping educational initiatives. The overall objective of the study reported in this chapter is to offer an insight into AF patient’s education needs.  4.2: Methods  4.2.1: Study design Qualitative descriptive research utilizing semi-structured interviews.  4.2.2: Setting Participants were recruited from the AF-specialized clinics at the Vancouver General Hospital and the Royal Columbian hospital in Vancouver, BC.   4.2.3: Sampling strategy Purposive sampling was utilized. Participants were recruited based on their experience with the condition (number of years since diagnosis), participation in the education program offered by the clinic and their highest level of education. In purposive sampling participants are sampled for the information they are likely to yield. I recruited participants based on heterogeneity in the 57  above-mentioned characteristics because these characteristics were considered good sources of information that would enhance the breadth of the data collected.  Any patient who had AF, was taking or considering taking stroke prevention therapy, and was aged 18 or older was eligible for this study. Potential participants who met the inclusion criteria and no exclusion criteria were recruited through an invitation letter from the clinic staff. The invitation letter summarized the research objectives and procedure. Once a patient expressed interest in participating, they were introduced to the researcher and asked to provide written informed consent. Participants could take as long as they wanted to read the consent form and ask any questions they had. Two separate signatures were obtained from participants, one for their participation in the study and one for being audio recorded. If patients did not consent to being audio-recorded, they could still participate in the study. Instead, the interviewer would take down notes on their responses during the interview. After giving consent, participants were asked for demographic data and whether they preferred to participate in the interview at the clinic or over the phone.  Participant recruitment started in September 2017 and continued until the point of saturation, whereby the recruitment of the past two participants was considered to not have led to any new parent codes, or shed any further light on the issue under investigation, as agreed by at least two researchers(SS and PL).129   58  4.2.4: Data collection The interview guide was revised in consultation with ten AF patients prior to start of this study. The interview guide for patients consisted of the following core questions: i) what are patients’ feedback around the current education approaches in the clinics? ii) what are patients’ commonly used information sources? iii) what are patients’ current knowledge of the condition and the medications? iv) what are patients’ expectations of an education program and preferences? The core questions in the interview guide were followed by many associated questions. All interviews were conducted by me. The interviews were conducted in English, in a private room, or over the phone, without the presence of any non-participants. Each interview lasted approximately 30 minutes.   4.2.5: Data processing Audio recorders were used to audiotape the participants. Field notes were also taken using pen and paper. Using the audiotaped files, the interviews were written down, within three days of the interview, to generate a verbatim transcript, a “verbatim account of all verbal and nonverbal utterances”.130, 132 The patient audio files were given an identification code starting with the letter P for “patient”, followed by a number.  The verbatim transcripts were written on a Microsoft word document which was named with the same identification code as the audiotaped file they represented. The transcripts were not returned to participants for comments and/or corrections.   4.2.6: Data analysis  Data was analyzed as per the clinician data explained in detail in chapter three.  59  4.3: Results After interviewing ten patients, two researchers (SS and PL) reached a consensus that saturation had been reached. As illustrated in table 4, 80% of the patient participants were male, with a mean age of 68.9 (SD 4.9) years. The mean interview time was 29.0 (SD 8.8) minutes. Patients had an average of eight years’ experience with AF. All patients consented to being audio-recorded.  Table 4: Characteristics of the patient participants. ID Number of years since diagnosis sex Age Current OAT Highest education level Number of years of experience with OAT Attended education session? P1 05 M 76 Apixaban Bachelors 04 No P2 02 M 76 rivaroxaban PhD  02 Yes P3 10 M 72 rivaroxaban Community college 03 Yes P4 02 M 62 None PhD  0 Yes P5 20 F 71 warfarin  High School diploma 02 Yes P6 07 F 63 Warfarin High School diploma 07 Yes P7 01 M 68 rivaroxaban Bachelors 0.5 No P8 06 M 71 dabigatran High School diploma 05 No P9 07 M 69 Apixaban High School diploma 07 Yes P10 17 M 62 None High School diploma 05 Yes  The codes given to every line of the interviews (child codes), were summarized under parent codes. Parent codes were then grouped under the following categories: i) emotional appraisal of the diagnosis; ii) information sources; iii) information looked for; iv) knowledge gaps; v) setting preferences; vi) risk communication style preferences; vii) content suggestions; and viii) design suggestions. These categories lead to the emergence of four themes. The coding of the data, and the decision trail from the child codes to the emerged themes is illustrated in the patient code book, in the appendix.  60  The rest of this chapter summarizes the themes that emerged in the interviews, along with exemplary quotations (verbatim). The emerged themes are also illustrated in the thematic map in figure 9.  Figure 9: Thematic map of patient results.  Theme 1: Emotional appraisal of the diagnosis Patients talked in detail about their anxiety. To explore it thoroughly, many follow up questions were asked about its nature and sources. The main sources of anxiety were: i) not knowing what AF is and its consequences; ii) fear of AF-induced heart attack or death; iii) receiving conflicting 61  information and not knowing what pieces of information applies to them; and iv) the cardiac nature of the disease since anything related to heart is scary.   “Well heart condition is scary, right? cause it’s next to cancer...for …shortening your life, so of course I was concerned, because well first of all I didn’t even know what AF was and second I didn’t know just how…erm..what the..erm.. short-term effects versus the long-term effects…I think the anxiety of it, more than anything… not knowing …not knowing is what scares you, once you know a little bit your anxiety decreases.” “We [patient and his wife] didn’t know what we were dealing with, and we were seeing lots of stuff that didn’t apply to us. We didn’t know if it applied to us or not, is this what we are having or not what we are having.”  “If I had something where I could have read more about it all, like once they diagnosed me with the type of AF I had, erm, I think I would have felt a lot better knowing what the different options I, that were kind of available to me, and that it wasn’t to death. That was kind of the thing that bothered me the most, that, this is…I’m too young to dye, you know, this is ridiculous.”  Some patients declared that their anxiety level is so high that it affects their quality of life. Some patients mentioned considering quitting their job, or avoiding the activities they liked such as taking their annual family trip to Mexico, or riding their bike, after AF diagnosis. This was mostly because patients are not sure how much they can push themselves and therefore tend to hold back in fear of causing an AF episode. “It started affecting my life in general. I love to ride the bicycle. Riding the bicycle despite my size, erm does all kinds of good things for me, mentally but now I don’t feel like it’s appropriate to ride hills. I don’t know what’s gonna happen, I don’t know whether the extra strain on my heart is gonna cause me to faint again. I don’t wanna, I ride on the road, and the idiots in this part of the world they just run over you, in the car.” “I was paralyzed with it, erm, where I was working at the time, they were gonna lay off one of the junior workers and I walked in and I said lay me off…because, I can’t, I was so afraid, it was gonna do me in this job and they didn’t want…no, no, no, you are the most senior, I said no, I need to go on medical leave, I have to deal with this. At that time, it felt like a football team 62  going on in my chest and I looked down on my chest and like jeez can you see it going up and down.”  Based on patients’ experience, anxiety is worst early on, when first diagnosed. Anxiety levels come down as patients learn more about their condition (through reading, discussions with the care providers, and receiving education from their care providers), and start “taking control” (by receiving care from the clinics and starting on medications). Specifically, learning that AF is not fatal and that there are thousands of people around the world suffering from it seems to have helped the most. “In the beginning, to tell you the truth, I was absolutely, err, frightened beyond belief. What was going on with me, because I just didn’t understand it, and, I… it wasn’t until I went and got all these brochures and started reading about it, that I got a little bit more information.” “The doctors and the nurses spent a lot of time educating us with the details, because we didn’t know… and knowledge is everything because… or..or…80%,  because, then it can reduce the anxiety if you know, you know when to worry…”  Theme 2: Information seeking behavior i) Information sources  When asked about the common sources of information referred to, patients most commonly stated “Google”. Patients do not usually look for specific websites, they rather type their question into the Google search box and browse through the suggested websites. A few patients however did mention looking specifically into the “Mayo Clinic”, “Cardiac Services British Columbia” and the “Heart & Stroke Foundation” websites. Some of the more educated patients had attempted to read studies on AF published in medical journals but soon gave up since they couldn’t understand the methodology or the results.  63  “Normally it would be a doctor, my normal GP[general practitioner], which we recently changed cause we moved, but...and… I would ask him about whatever… you run into other people who have had it, and either had the ablation done or not and they are on whatever, so we sit around and chit chat and you notice, you find out that the way it happened to them is way different than mine ... and ...err… or not, I mean because it’s been both…but mostly actually people I run into, errr, had it much more frequently, err, like weekly or every month.” “I googled everything and like I said I went to the heart and stroke I got brochures, and they have some good brochures, that I actually have.”  None of the patients had attempted to use YouTube to find videos or animations on the pathophysiology of their condition, other patients’ testimonials, or the mechanism of action of their medications. When YouTube was brought up by the interviewer however, they thought it was a great idea and wondered why it never occurred to them before. Other sources of information mentioned by patients was a blog named “afibbers.org” and their care providers at the clinic.   While Google seems to be a very popular source of information among AF patients, they all acknowledged the limitations of finding information on the internet, such as finding biased information provided by those with conflict of interest, inaccurate or misleading information and conflicting information.   ii) Reasons for referring to the internet While patients frequently refer the internet to find answers to all sorts of questions regarding their condition and medications, certain content seemed to be looked for more often than others. Patients consult the internet very often to find out about AF triggers. They browse through the 64  internet to find what other patients have cited as AF triggers and to seek validation for what they suspect are their own AF triggers, such as Monosodium glutamate (MSG), pumpkin soup or H.Pylori. Patients seek help from the internet “as new things come up”, usually after experiencing an unusual or unexpected side effect possibly related to medications or unusual symptoms. “You know that the pumpkin, we, in here I don’t know, but in Korea, Korean people use a lot of pumpkin soup. Pumpkin soup is really good, but their pumpkin soup really threw me out on the INR, and then I looked at it on Google, YES! Some people say yes, but we are not too sure.” “Well, I looked for triggers that’s caused the condition and what other people were experiencing as triggers, finding triggers like MSG [monosodium glutamate], I didn’t realize it could trigger the problem and seeing like that was a trigger for me. Once I identified I tried avoiding MSG, of course you can’t totally avoid it. Sometimes I would er, and I would be consuming something with MSG in it and I would have problem.”  Theme 3: Knowledge gaps Patients’ had difficulty classifying their AF as paroxysmal or persistent. Some were not aware that different classifications of AF exist. When asked what it is about their condition or medications that they wish they knew more about, many answered “symptoms” and “side effects”.  Patients shared stories of how confused and anxious they felt when experiencing the less commonly known symptoms of AF such as sweating and dizziness as they didn’t understand why they were experiencing them and wondered if they were experiencing medication side effects as a result of being on the wrong therapy.   In general, patients seemed to know more about warfarin than they did about DOACs. Negative attitude was however still observed towards warfarin as “rat poison” which suggests an 65  underlying misconception that warfarin, due to its previous use as a rat poison, is not indicated for use in humans, or is less safe than the DOACs.    Patients cited many everyday activities, for which there is no evidence, as triggers for their AF such as: eating too much; heartburn; pumpkin soup; MSG; and intense bone pain. Patients also very frequently confused “triggers” with “causes”. One patient believed she has AF because she binge-drank coffee one day, another believed he has been suffering from AF for the past couple of years because he got into a fight with his daughters one day which stressed him out. This could be due to the fact that patients have a hard time thinking of AF as a condition rather than a symptom secondary to a trigger. Indeed, patients shared that when first diagnosed with AF they thought of it as a symptom, secondary to their coffee drinking or stress, and did not understand that AF is a chronic condition with a pathophysiology that can progress and did not believe it will happen again. “ It all started with me one day at work…I ended up having 5 coffee, by the afternoon, like, Oh my god…. and when I got home, I only worked until 3 in the afternoon, so I was home at 3:30, erm… my heart was just going crazy and I was like “what is this?” and my doctor is just down the street, so I thought, I’m gonna go down there and see the doctor, maybe something’s wrong. So I went in there and they thought it was a silent heart attack and sent me for a….ECG? kind of… And I guess, that was the beginning of me starting to feel it. I never felt it before”  Most patients were aware of their increased risk of stroke. However, there was a lack of knowledge around the comorbidities that add to their risk of stroke. Patients could name the CHA2DS2-VASc criteria that were relevant to them but were unable to list all the CHA2DS2-VASc criteria, when asked.  66  “I know, I know that statistically if you have high blood pressure, I guess the stats say that most AFs have high blood pressure, overweight is another one, there is a couple of others, but I don’t remember, they don’t apply to me, so I don’t remember.”  Theme 4: Education preferences i) Setting preferences Patients preferred the classroom setting because it allowed them to have a face to face interaction and receive immediate answers to their questions. They also appreciated the chance to listen to other patients share their experiences and considered this as an educational opportunity to learn about the spectrum of AF and the ways in which it can differ among patients, as well as to listen to the questions that other patients have, questions that they may not have thought about but may be relevant to them.  Group education sessions in a classroom setting also gave some patients a sense of relief as they realized they are not the only one with this condition.  “As a class is good. because people give you comments, opinions, and they have questions and you are…you don’t have that questions but you find this question interesting, you will learn as if you were asking.”  Some participants however found the group format of classroom education to be a drawback. They considered classroom education to be too generic, leading to confusion about what information applies to them and therefore unnecessary anxiety. Other drawbacks of learning in a classroom setting mentioned by the participants was the requirement to be physically present at a specific time and a place which is accompanied with parking and commute issues. Patients especially mentioned this issue if they travelled often or lived far away from the clinics.  Patients liked the convenience offered by online education as it could be accessed from anywhere and at 67  any time, so they could refer to it when they had a question and not have to wait for their next appointment or the next education session.  “Well, I’m not a big fan of PowerPoint but other than that it was fine, the only draw-back for me was at that point we were…erm…  think I was…we were on the road, so I sort of had to make a point of being in Vancouver, most people live there and I used to and that wouldn’t have been so bad, so that’s just a personal thing for me, it was my own doing and nothing to do with the person who set up the PowerPoint. I thought the young lady was very knowledgeable, the PowerPoint presentation was very straight forward it was not confusing. Parking is terrible…hahaha”. “When I first went to education session I didn’t have AF, I had flutter and they were talking about operations and stuff and we didn’t even know…is it for us…or somebody else…yea they were talking about ablation and surgery and pacemaker…stuff, they are just confused…” “Erm, if I was, if I was a patient that would say…wasn’t available, like, I couldn’t go to the clinic, and I was in the house to deal, like maybe I lived in Prince George or St Johns, or something like that. I would really appreciate having, erm, erm something on the internet where I could plug in and maybe have a chat session and like ask questions. Like YouTube, like if there was information on YouTube, if there was something where I could, like a blog almost, where, erm, people could ask questions and questions be answered by someone that knows what they are talking about and not doctor Google”  Most patients acknowledged the pros and cons of both delivery methods and suggested the online education program as complementary to classroom setting whereby most of the teaching is done through the online education program and the classroom sessions are focused more on questions and answers.   ii) Risk communication style preferences Some patients considered ARR and RRR to be “too complicated”, “too deep” or not meaningful enough and preferred more descriptive terms such as “lower” or “higher” risk, while some 68  patients were interested in the percentage stoke prevention efficacy and bleeding risk numbers as justification of the doctors’ decision.  iii) Content suggestions Patients think it is necessary to communicate the prevalence of AF, to help them understand that they are not alone, and to reduce their anxiety. While patients are interested in clinical information pertaining to their condition, they do not want to receive this information in an abstract form. Patients would like to know how AF will affect them, such as what this diagnosis means for them in terms of quality of life, activities they enjoy and if there is anything they can do to help it.  In light of wanting to take control of their condition, “triggers” and “self-management” were the aspects of AF that patients were most interested in learning about.  “I think it’s really important that people realize that this is a common thing, that a lot of people have it, and…that there are, solutions, you know, it’s not the end of the line for you, and the things they wanna, some of the things they can do for you, which is.. they did tell me a lot of that stuff at the clinic.”  iv) Design suggestions Most patients believed that an online education program should not take more than half an hour, unless they are able to pause the program or save their progress and come back to it later, in which case a couple of hours was acceptable. Big font was also emphasized by patients as most of them wore glasses. “I think it could easily be a half an hour especially if they can take their time and it would be nice if it was something that, erm. If you feel you got control of something, you feel more in control yourself, it kind of, it would settle me down, I know that in the beginning. It was just too many little bits and pieces 69  from everybody, but if I could have one thing that would talk about the whole thing, I think that would have been fabulous, I really do.” “Well, if you make it interactive and not boring and cute little cartoons, ermmm….I would say somewhere between 15-30 minutes.” “Erm, a couple of evenings would be no problem. Couple of hours per evening. 2or 3 evenings. I would be quite happy to do that.” “Make the screen big because believe me, without my glasses, everything’s so blurry, that’s half the battle, being able to see….and colorful, old people like colors…hahahahha” “The print has to be large, no small print, for sure and…and….erm, maybe , not with too much on each page. So they can flip between pages easily, erm, that’s, that’s my friend who I deal with her a lot, that’s one of the big things, it’s the print size, some of the things that Apple® has done, she can’t read because it’s too small. so it has to be really legible and very user friendly, that’s the big thing.”  An ideal online education program, according to the patients, is interactive and allows questions to be asked of an expert, preferably in real-time. Having a section on “frequently asked questions” was suggested as the second-best option if interactivity with experts cannot be offered.   The ability to move easily between different sections of the education program was important for patients. Having the content organized hierarchically was suggested by one of the participants, with the most general information offered in the first layer so that if a patient finds the information relevant to them and interesting, they can then click on it and read more. Moreover, if they want to learn about the other aspects of their condition, they can go back to the first layer (homepage) and switch sections without getting lost in the program.  70  Another feature requested by patients was patient testimonials. Patients would like to learn what others go through and how their symptoms compare with those of the others. Patients believed that hearing other people talk about their journey with AF inspires them, gives them hope and will help reduce their anxiety.   “Maybe ….maybe….maybe …one good idea is to talk to people who have this treatment, I mean they the AF, they have the treatment…to talk to them, how do you feel now? Did it work for you? My first questions would be: “were you afraid?” hahahahha…sure everybody would be afraid.”   4.4: Chapter conclusion Patients discussed their anxiety around the diagnosis extensively. This was in line with clinicians’ identification of emotional education need among this patient population. Patients discussed the specific sources of their anxiety and the strategies that have helped them overcome it. They admitted to frequently refer to the internet “as new things come up” to find answers to their questions. They however did acknowledge that internet is not a reliable source of information and that conflicting information read on the internet has sometimes aggravated their anxiety instead of helping it. A few knowledge gaps were also identified among patients. Patients also talked about their preferences around the setting, content, design and delivery of the education they receive. The varying patient preferences around the risk communication styles is in line with clinicians’ current risk communication strategies reported in chapter three, which involves adjusting the level of risk communication to patients’ interest, understanding and resistance to therapy. With regards to delivery, majority of the patients appreciated the interactivity offered by classroom setting and the accessibility offered by online education 71  programs. They therefore suggested that the two delivery methods should both be available to complement each other.                        72  Chapter 5: Summary of the findings and conclusion  5.1: Summary of clinician and patients’ views Interviewing both the clinicians and the patients provided rich data on the education needs of AF patients. Many knowledge gaps and misconceptions were identified in interviews with both groups, although, knowledge gaps were easier to identify through clinicians than patients. I mapped the identified knowledge gaps under the CSM and HBM models (appendix) to summarize them and to look at their inter-relation and the interconnection with the HBM and CSM components. A majority of the identified knowledge gaps fell under the “perceived barrier” component of the HBM and the “understanding consequences” component of the CSM model. The “perceived barrier” component of HBM includes patient opinions of the tangible and intangible costs of the advised action, in this case taking medications. Patients’ perceived barriers identified in my study were: thinking of pharmacotherapy (particularly warfarin) as unsafe or more unsafe than natural alternatives; poor grasp of their risk of stroke (secondary to their inability to connect concepts such as low INR or higher CHADS2 score to higher risk of stroke), and subsequently their inability to understand that the stroke prevention efficacy offered by their medications outweighs the inferred bleeding risk. In addition to overcoming the barriers patients have in taking their medications, it seems that work is also needed to help patients understand the consequences of AF and nonadherence to their medications (stroke and its associated debilitation) and also clarifying that AF does not lead to heart attack or cardiac arrest.   The results of my two educational needs assessment studies however went well beyond identification of knowledge gaps. Results from interviews with both groups identified a 73  significant “emotional education need”, the need for an education that not only conveys clinical information but also addresses patients’ anxiety. Both patients and clinicians indicated that emphasis on the prevalence of AF and reassurance that AF is unlikely to adversely affect their quality or length of life, helps with the anxiety and should be provided early on after the diagnosis, as anxiety seems to be worst then. Identification of patients’ emotional education needs -in addition to assisting clinicians in reducing patients’ anxiety- can be very helpful in helping the clinicians better understand patients’ information processing and decision making. Hibbard et al. suggested that information processing for decision making occurs in two modes: 1) analytical mode, involving conscious, deliberate and verbal reasoning and 2) experiential mode, involving intuitive, associative and emotional processing of information.73 Studies have shown that emotions provide both motivation and meaning to choice processes, such as the choice of taking or not taking a medication.73 Understanding patients’ emotional appraisal of their condition and medications is therefore very valuable in designing patient education programs.   Stroke and bleeding risk communication with patients was identified as the most challenging aspect of AF and stroke education by clinicians. Stroke prevention medications do not offer full protection against stroke. Communication of the relative and absolute risk reduction offered by different anticoagulation strategies as well as their inevitable accompanying risk of bleeding has always been challenging as these calculations are hard to grasp for patients. My interviews with clinicians suggested that, drawing from years of experience with AF patients, it is best to adjust the level of risk communication to patients’ interest, level of education and understanding as well as their resistance to therapy. At the very least clinicians commonly use the CHADS65133 score 74  to list the comorbidities contributing to patients’ risk of stroke. This approach seems logical given the data collected from patients regarding their risk communication preferences indicated great variability.  In terms of design and delivery of AF education, both patients and clinicians have a positive view of virtual education. This was reflected from their comments on the many advantages of having access to a reliable online education program and patients’ existing practice of referring to the internet to learn about their condition. Patients however appreciate the interactive nature of classroom settings and would like to have access to both delivery methods.   Patient testimonials and narratives was also very commonly discussed by both participants. Previous research indicates that using narratives makes use of both information processing modes (analytical and experiential), improves memory retention and gives meaning to the information (occurrence of stroke means possible loss of speech an mobility and a subsequent lower quality of life).73 Participants in my study however mostly referred to the emotional benefits of hearing another patients’ narratives such as getting a sense of community, finding hope and motivation. Some valid concerns were however brought up by the clinicians regarding the anecdotal nature of the narratives and their potential to mislead patients, which calls for more studies on this topic, specifically in the context of AF and stroke narratives.  5.2: Implications for future AF education programs  Below I have summarized the recommendations provided by both the patients and clinicians augmented with the educational needs identified in my studies. The following recommendations 75  are not intended as a full curriculum for an AF patient education program but are meant to provide guidance on addressing the common issues identified in this research which may not be obvious to clinicians in the normal course of teaching patients about AF and its treatments. 1. AF patient education programs should, in addition to conveying the clinical information pertaining to AF and its management, address patients’ emotional needs, particularly anxiety around their condition. AF patients’ anxiety may be reduced by: ➢ Teaching patients about the spectrum of AF (from asymptomatic and paroxysmal to persistent and symptomatic). Emphasize that wherever they currently are on the spectrum, AF will still not cause their heart to stop. ➢ Educating patients on the less common symptoms of AF and side effects of medications. This can reduce anxiety when they are experienced.  ➢ Emphasizing that AF does not cause a heart attack, and is not itself a fatal condition. ➢ Communicating the prevalence of AF. Knowing they are not alone in suffering from AF helps reduce anxiety.  ➢ Emphasizing that AF does not necessarily mean lifestyle limitations are required. Ensure patients know they can still have a normal life and continue doing the activities they enjoy, and talk as specifically as possible about the ones patients may have questions or concerns about.   2. Correct/prevent potential misconceptions by: ➢ Conveying the possible causes and the pathophysiology of AF and its relation (or lack thereof) to AF symptoms, to ensure that AF is understood as a condition and not merely as a set of symptoms.  76  ➢ Explaining that risk of stroke (and bleeding) is totally unrelated to the presence or absence of symptoms or how healthy the patient feels, and hence anticoagulants should not be discontinued when symptoms subside. ➢ Correcting the conception of warfarin as “rat poison” to reduce resistance to warfarin as a viable and non-poisonous therapeutic option. 3. Individualize risk communication: Adjust the risk communication conversation to patients’ level of understanding, interest, resistance to therapy and education background. 4. Do not provide clinical information in abstract form: Link the evidence to patient’s case and explain how what you are teaching relates to the specific patient.  5. Include patient testimonials or stories. When skillfully used, testimonials can be a powerful education technique and an effective anxiety-relieving strategy.  6. In terms of content, emphasize more on consequences of AF and non-adherence as well as patients’ perceived barriers. Majority of the identified knowledge gaps, from both patient and clinician results, fell under these components of the CSM and the HBM models (appendix).  5.3: Discussion I initially did not aim to focus on patients’ emotions, but patients’ anxiety emerged during the course of the research as an important education need.  Misconceptions and poor knowledge were commonly blamed by both patients and clinicians as the reasons behind experiencing anxiety, and education was considered helpful by both groups. This aligns with evidence from the literature which suggests that a good understanding of AF is negatively associated with negative emotions (r =−0.38) and belief about AF negative consequences (r =−0. 21), and 77  positively associated with beliefs that AF is controllable (r = 0.33).134 However, only two studies have looked at the effect of education on anxiety in AF patients. Pooled data from studies looking at the effect of education on AF patients’ emotional appraisal of their condition shows that education has a small but positive impact on anxiety (P = 0.04) and depression (P = 0.02) over one year among this patient population.68  Medical communication consists of “instrumental” and “affective” language.135 The aim of instrumental language is to convey clinical facts and evidence such as the advantages and disadvantages of different therapy options.136  Affective language however involves expression of empathy and attempts to address patients’ concerns.137 The main finding of my study was that patients are in great need of incorporation of affective language when receiving education from their caregivers. The clinicians in my study were highly aware of this need for AF patients and could paint a clear picture on the issue. It should however be noted that most of my clinician participants were recruited from the AF-specialized clinics. For some of them, AF patients are the only patients they have ever cared for during their medical practice. Their awareness of the anxiety among AF patients and their techniques to address patients’ concerns may not come naturally to other healthcare providers. This is evident by the fact that despite the vast number of studies reporting on anxiety among AF patients52, 134, 138-140  there is only one published AF education program developed with patient anxiety in mind.70 Awareness of other clinicians about the emotional education needs of AF patients is particularly important since 70% of the AF patients in BC are being cared for by general practitioners.  78  5.3.1: Validity of the study findings   I tried to ensure credibility through meticulous record keeping, field note taking, production of verbatim transcripts soon after the interviews, and writing a code book to explain a transparent decision trail. I also incorporated patient input in designing the interview guide and sought two different perspectives on the topic to allow for comparison.   The above, however, while good research practice, do not prevent researcher bias. The descriptive nature of QD allowed me to stay close to informants’ perception, but it also exposed the research to my sensitivity and subjective understanding of the data.78 It was therefore essential for me to be cognizant of my positionality during the data collection and analysis of this study. As a 25-year-old, non-Canadian graduate student, I was positioned as an “outsider” by my patient participants. A 25 years old, foreign student cannot possibly have any idea on what it feels like to have AF, “old people’s disease”; to receive education on her medications in a Canadian healthcare system; or to search on the internet for information she never received from her clinicians. This perception of “outsider” by patients became an advantage during data collection. I perceived that participants assumed very little knowledge around the topic on my part and hence elaborated on their answers to my questions. I, however, was not truly an “outsider”. Before starting the data collection phase of this study, I had attended the education sessions offered at the clinics, had consulted with ten patients to help improve my interview guide (a process through which I learned a lot about the topic), and had conducted a literature review on AF patients’ knowledge gaps, all of which proved useful during data collection but may have introduced some biases during data analysis.  79  The clinician participants, however, positioned me as an “insider”. This was mostly due to my undergraduate Pharmacy degree, my earlier presence at the clinic education sessions, and my previous collaboration with them on other research projects. The “insider” positionality with the clinicians allowed me to ask insightful questions, understand the medical terminology, and produce an authentic description of their perspectives on the issues. As I was conducting this study, I was also heavily involved in a Cardiac services British Columbia endorsed project, to develop an online education program for AF patients. I therefore may have looked harder to find what I personally considered important based on: i) my experience designing an education program for this patient population, and ii) the findings of my literature review.  5.3.2: Transferability of the findings All my patient participants were recruited from the AF-specialized clinics. I know, from our previous studies conducted on this specific AF patient population, that the AF clinic patients are more knowledgeable and in better control of their condition (better adherence) than those who do not enjoy the specialized care and education offered by the clinics. Therefore, I speculate that the knowledge gaps and misconceptions among the general AF patient population, may be more serious than what I observed and reported in this study.   The patients’ comments on their preferences for education delivery (classroom versus online education) was based on, and affected by their experience receiving education at the AF clinics. These education sessions are delivered collaboratively by a Pharmacist, a Nurse and a Nutritionist, to groups of 20 AF patients, using PowerPoint slides, in a classroom setting where everyone can share stories or ask questions. Other AF patients in BC or across Canada may have 80  different opinions about classroom setting education, depending on the type and quality of the AF education they may have received.  The other findings of this study, I believe, are transferable to AF patients of Caucasian background, who are living in Canada. I do not have any reason to believe that patients’ emotional education needs, their information seeking behavior, or their risk communication style preferences, should differ among those cared for at the clinics and those cared for by a general practitioner.  I was initially concerned about the transferability and applicability of my study findings to AF patients living in rural areas. My concern was mostly around the findings related to patients’ information seeking behavior (referral to the internet) and design and delivery of education programs (online vs classroom setting), and it was due to my anticipation of internet access issues, lower computer literacy, and lower health literacy, among this particular AF population. This concern was however removed by a recent qualitative study by Rush et al. who studied AF patients’ perspective on tele-health (the use of various forms of technology for exchange of healthcare information over geographical distances), in a rural setting in Canada. In line with my study, Rush et al. reported that AF patients in rural settings  have a positive attitude towards the use of technology to address knowledge gaps and for emotional support (particularly early on after the diagnosis); frequently rely on the internet to find information; and are concerned about the reliability of the information found on the internet.141   It is worthy to note that there was a significant gender imbalance in both groups. Most of the clinician participants were female while patient participants were mostly male. This gender 81  distribution is however representative of the AF patient and clinician population and hence does not, in my opinion, affect the transferability of the study findings.   5.3.3: Limitations and strengths This research study filled a gap in the literature regarding the education needs of AF patients. Many quantitative studies had been conducted previously to assess AF patients’ knowledge gaps, utilizing surveys and reporting the results as the proportion of patients who demonstrated knowledge in survey questions. The inductive approach of analysis in this study, allowed me to explore the many aspects around AF patient education such as knowledge gaps, misconceptions, information seeking behavior, education style preferences, commonly used information sources, and attitudes toward online education versus classroom setting- most of which can hardly be captured by surveys and have therefore never been explored before. A couple of articles have attempted to offer recommendations for AF education programs,65, 142 drawing from the authors experience providing care for this group of patients, however none have been evidence-based.  This study, for the first time, has offered recommendations for AF education programs, based on evidence obtained through rigorously designed qualitative research of two populations (patients and clinicians).   Interviewing both the clinicians and the patients provided me with multi-perspective, rich data that would not have been possible if I had only focused on one group. The depth of the collected data is also partly owed to the many years of experience the two participant groups had with the condition. The interviewed patients had an average of eight years of experience with AF and the clinicians had an average of thirteen years of experience caring for AF patients. The results from 82  the clinician interviews specifically added a new dimension to our current understanding of AF patients’ education needs. Furthermore, most of my patient participants were on a DOACs at the time of the interview. Although I did not identify any DOAC-specific education needs, the inclusion of AF patients on DOAC is a strength of the study since most prior data is on AF patients taking warfarin.   Utilization of purposeful sampling facilitated the collection of broad insights and rich information.78, 83 Furthermore, utilization of multiple data collection methods (face to face and telephone-based interviews) gave me a wide geographical access with clinicians from six different practice sites around BC. A limitation of conducting the interviews over the phone, however, was the loss of non-verbal cues such as facial expressions and body language.143 On balance, this format was necessary to ensure feasibility given the busy schedules of the clinicians, the dispersity of the AF clinics in BC, and to maximize flexibility for participating for clinicians and patients. Verbatim transcripts were however generated capturing non-verbal utterances, to ensure data was captured as fully as possible.   5.3.4: Future research directions My research showed the importance of eliciting patients’ and clinicians’ views before designing and developing patient education programs or materials. This principle should be kept in mind in design of any patient education program, material, or initiative.   The “emotional education need” is a relatively novel finding. While anxiety is a well-known issue among AF patients, it has always been analyzed and reported in the context of “patients’ 83  experience with the disease” and very seldom looked at as an education target, until very recently. Future research should explore whether this emotional education need also exists among other cardiac patients with similar conditions. Considering that the main culprits of patient anxiety were knowledge gaps, symptom severity, unpredictability, and the cardiac nature of the condition, one wonders whether patients with other chronic, symptomatic, unpredictable cardiac conditions have the same overlooked education need.   Stroke and bleeding risk communication remains the biggest challenge in AF patient education. Both patient and clinician data suggested that patients do not agree on a single method of risk communication. My study suggests that clinicians should adjust their risk communication with patients’ preferences. However, the variety in patients’ preferences for risk communication as well as the diversity of techniques available for this purpose (pie charts, bar charts, cates plots, decision aids and risk calculators144), call for more studies on this topic to find the “how” and “when” of these teaching tools.   Finally, this descriptive qualitative study laid out the foundations of understanding AF patients’ education needs. A future grounded theory study can perhaps facilitate the development of the theoretical underpinnings of AF patients’ education receptiveness, preference, and information retention.     84  5.3.5: Future practice implications Patient education is crucial for the AF population given the misconceptions, knowledge gaps and the elevated level of anxiety identified among them. Education is embedded in many health care services we offer to patients. The findings of this study therefore have a full range of applications beyond design of education programs. My findings can be used by clinicians during patient counselling, and shared decision making. They can also be used to inform medication pamphlets, brochures and consumer drug information sheets, as well as the design and delivery of tele-health services, virtual AF clinics and decision aids. At the societal level, it can be used to inform health promotion initiatives and strategies aimed at AF patients.   5.4: Conclusion In this thesis, I aimed to offer a unique and in-depth insight into AF patients' education needs through elicitation of both patient’s and clinician’s perspectives. My study not only complements the current quantitative and the very few qualitative studies on AF patients’ knowledge gaps, it goes beyond identification of knowledge gaps to provide a rich description on patients’ information seeking behavior, education style preferences, attitude towards online education, expectations of an education program, emotional education needs, preferences for risk communication and their common misconceptions and offering clinicians’ views on the topic. I have also offered a set of evidence-based recommendations for future education practices around AF and its management. My findings are relevant to clinicians who are involved in caring for and/or educating AF patients, and have direct applicability to practice.  85  References  1. World Health Organisation. Milestones in Health Promotion: Statements from Global Conferences. Geneva, Switzerland WHO press, 2009. 2. Nutbeam D. 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SPARCTOOL,Available from: http://sparctool.com/           94  Appendix Meta-analysis: Medication-related knowledge categories  Pooled proportion of AF patients demonstrating knowledge of the name of their OAT:   Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random McCabe 2008 100 85.000 76.469 to 91.355 61.96 52.09 Rewiuk 2007 61 68.852 55.706 to 80.097 38.04 47.91 Total (fixed effects) 161 79.016 71.954 to 84.992 100.00 100.00 Total (random effects) 161 77.445 60.099 to 90.923 100.00 100.00  Name of ones' own OAT0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionMcCabe 2008Rewiuk 2007Total (fixed effects)Total (random effects)95  Q 5.7156 DF 1 Significance level P = 0.0168 I2 (inconsistency) 82.50% 95% CI for I2 26.53 to 95.83                             96  Pooled proportion of AF patients demonstrating knowledge of the vitamin K content of different food options:  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Cook-Campbell 2010 36 36.000 20.731 to 53.668 26.81 34.68 St-louis 2003 100 48.000 37.901 to 58.221 73.19 65.32 Total (fixed effects) 136 44.859 36.391 to 53.552 100.00 100.00 Total (random effects) 136 43.935 33.224 to 54.939 100.00 100.00   Vitamin K content of different food options0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionCook-Campbell 2010St-louis 2003Total (fixed effects)Total (random effects)97  Q 1.5135 DF 1 Significance level P = 0.2186 I2 (inconsistency) 33.93% 95% CI for I2 0.00 to 0.00                              98   Pooled proportion of AF patients demonstrating knowledge of the interaction between their OAT and other drugs.          Drug-drug interaction0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionAmara 2015Chenot 2014Cook-Campbell 2010Lane 2005Lip 2007McCabe 2008Nedeloiu 2011Smith 2010St-louis 2003Desteghe 2016Lee 2012Total (fixed effects)Total (random effects)99  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Amara 2015 1147 23.017 20.609 to 25.564 34.28 9.47 Chenot 2014 345 20.000 15.908 to 24.616 10.33 9.36 Cook-Campbell 2010 36 41.667 25.514 to 59.243 1.10 8.21 Lane 2005 93 36.559 26.812 to 47.188 2.81 8.96 Lip 2007 711 16.034 13.412 to 18.941 21.26 9.44 McCabe 2008 100 48.000 37.901 to 58.221 3.02 9.00 Nedeloiu 2011 126 57.143 48.024 to 65.918 3.79 9.10 Smith 2010 100 72.000 62.133 to 80.521 3.02 9.00 St-louis 2003 100 71.000 61.073 to 79.643 3.02 9.00 Desteghe 2016 466 55.794 51.153 to 60.361 13.94 9.40 Lee 2012 114 42.105 32.919 to 51.712 3.43 9.06 Total (fixed effects) 3338 31.090 29.525 to 32.689 100.00 100.00 Total (random effects) 3338 43.185 31.180 to 55.612 100.00 100.00  Test for heterogeneity Q 465.3611 DF 10 Significance level P < 0.0001 I2 (inconsistency) 97.85% 95% CI for I2 97.13 to 98.39          100   Pooled proportion of AF patients demonstrating knowledge of the mechanism of action of their OAT:          Mechanism of Action of blood thinners0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionLane 2005Lip 2002Nedeloiu 2011Rewiuk 2007St-louis 2003Total (fixed effects)Total (random effects)101    Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Lane 2005 93 19.355 11.893 to 28.853 18.65 20.00 Lip 2002 119 64.706 55.417 to 73.244 23.81 20.11 Nedeloiu 2011 126 85.714 78.365 to 91.308 25.20 20.13 Rewiuk 2007 61 93.443 84.053 to 98.185 12.30 19.74 St-louis 2003 100 87.000 78.796 to 92.893 20.04 20.03 Total (fixed effects) 499 71.227 67.058 to 75.144 100.00 100.00 Total (random effects) 499 71.973 44.450 to 92.638 100.00 100.00  Test for heterogeneity Q 165.9011 DF 4 Significance level P < 0.0001 I2 (inconsistency) 97.59% 95% CI for I2 96.15 to 98.49               102   Pooled proportion of AF patients demonstrating knowledge of the understand the term “blood thinner”:          Understand the term "blood thinner"0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionCook-Campbell 2010Rewiuk 2007Total (fixed effects)Total (random effects)103    Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Cook-Campbell 2010 36 91.667 77.531 to 98.247 37.37 48.30 Rewiuk 2007 61 68.852 55.706 to 80.097 62.63 51.70 Total (fixed effects) 97 77.901 68.446 to 85.622 100.00 100.00 Total (random effects) 97 80.417 54.927 to 96.767 100.00 100.00   Test for heterogeneity Q 7.4471 DF 1 Significance level P = 0.0064 I2 (inconsistency) 86.57% 95% CI for I2 46.82 to 96.61                104  Pooled proportion of AF patients demonstrating knowledge of the interaction between their OAT and food:            Drug-food interaction0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionAmara 2015Baker 2011Chenot 2014Lip 2007McCabe 2008Rewiuk 2007Clarkesmith 2010St-louis 2003Lee 2012Total (fixed effects)Total (random effects)105  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Amara 2015 1147 19.000 16.768 to 21.392 39.97 11.59 Baker 2011 185 33.000 26.277 to 40.278 6.48 11.24 Chenot 2014 345 31.000 26.156 to 36.173 12.05 11.43 Lip 2007 711 43.000 39.326 to 46.732 24.79 11.54 McCabe 2008 100 72.000 62.133 to 80.521 3.52 10.91 Rewiuk 2007 61 6.557 1.815 to 15.947 2.16 10.48 Clarkesmith 2010 100 68.000 57.923 to 76.978 3.52 10.91 St-louis 2003 100 53.000 42.758 to 63.059 3.52 10.91 Lee 2012 114 48.246 38.789 to 57.796 4.00 10.99 Total (fixed effects) 2863 32.211 30.503 to 33.955 100.00 100.00 Total (random effects) 2863 40.421 28.391 to 53.067 100.00 100.00  Test for heterogeneity Q 320.4465 DF 8 Significance level P < 0.0001 I2 (inconsistency) 97.50% 95% CI for I2 96.50 to 98.22            106  Pooled proportion of AF patients demonstrating knowledge of the interaction between their OAT and alcohol:            Drug-alcohol interaction0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionBaker 2011Lip 2007Rewiuk 2007Total (fixed effects)Total (random effects)107  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Baker 2011 185 62.000 54.588 to 69.021 19.37 33.78 Lip 2007 711 43.000 39.326 to 46.732 74.17 34.71 Rewiuk 2007 61 84.000 72.369 to 92.134 6.46 31.50 Total (fixed effects) 957 49.501 46.292 to 52.713 100.00 100.00 Total (random effects) 957 63.032 41.287 to 82.307 100.00 100.00  Test for heterogeneity Q 58.0414 DF 2 Significance level P < 0.0001 I2 (inconsistency) 96.55% 95% CI for I2 92.85 to 98.34                  108  Pooled proportion of AF patients demonstrating knowledge of the therapeutic INR range:            Therapeutic INR range0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionAmara 2015Chenot 2014Cook-Campbell 2010Koponen 2007Lane 2005McCabe 2008Clarkesmith 2010Lee 2012Total (fixed effects)Total (random effects)109  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Amara 2015 1147 91.020 89.215 to 92.611 53.57 12.83 Chenot 2014 345 46.087 40.736 to 51.506 16.15 12.75 Cook-Campbell 2010 36 41.667 25.514 to 59.243 1.73 11.85 Koponen 2007 200 64.000 56.929 to 70.650 9.38 12.66 Lane 2005 93 55.914 45.238 to 66.203 4.39 12.44 McCabe 2008 100 76.000 66.426 to 83.978 4.71 12.47 Clarkesmith 2010 100 78.000 68.608 to 85.670 4.71 12.47 Lee 2012 114 35.965 27.191 to 45.487 5.37 12.52 Total (fixed effects) 2135 76.939 75.096 to 78.708 100.00 100.00 Total (random effects) 2135 62.361 42.752 to 80.065 100.00 100.00  Test for heterogeneity Q 460.0902 DF 7 Significance level P < 0.0001 I2 (inconsistency) 98.48% 95% CI for I2 97.93 to 98.88             110  Pooled proportion of AF patients demonstrating knowledge of the side effects of OATs:            Side effects of OATs0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionBaker 2011Cook-Campbell 2010Desteghe 2016Total (fixed effects)Total (random effects)111  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Baker 2011 185 64.865 57.520 to 71.725 26.96 26.96 Cook-Campbell 2010 36 58.333 40.757 to 74.486 5.36 5.36 Desteghe 2016 466 64.807 60.280 to 69.144 67.68 67.68 Total (fixed effects) 687 64.426 60.726 to 68.003 100.00 100.00 Total (random effects) 687 64.426 60.818 to 67.955 100.00 100.00  Test for heterogeneity Q 0.6582 DF 2 Significance level P = 0.7196 I2 (inconsistency) 0.00% 95% CI for I2 0.00 to 89.81                   112  Pooled proportion of AF patients demonstrating knowledge of the term “INR” and its interpretation:           The term "INR" and its interpretation0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionDesteghe 2016Lee 2012Total (fixed effects)Total (random effects)113  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Desteghe 2016 466 41.700 37.181 to 46.325 80.24 80.24 Lee 2012 114 37.000 28.146 to 46.547 19.76 19.76 Total (fixed effects) 580 40.801 36.777 to 44.918 100.00 100.00 Total (random effects) 580 40.801 36.842 to 44.819 100.00 100.00  Test for heterogeneity Q 0.8202 DF 1 Significance level P = 0.3651 I2 (inconsistency) 0.00% 95% CI for I2 0.00 to 0.00                   114  Pooled proportion of AF patients demonstrating knowledge of their latest INR reading:           Ones' own latest INR reading0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionCook Campbell 2010McCabe 2008Clarkesmith 2010Lee 2012Total (fixed effects)Total (random effects)115  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Cook Campbell 2010 36 25.000 12.120 to 42.203 10.45 24.46 McCabe 2008 100 96.000 90.074 to 98.900 28.53 25.16 Clarkesmith 2010 100 76.000 66.426 to 83.978 28.53 25.16 Lee 2012 114 32.000 23.573 to 41.388 32.49 25.21 Total (fixed effects) 350 65.235 60.021 to 70.191 100.00 100.00 Total (random effects) 350 60.331 23.762 to 91.206 100.00 100.00  Test for heterogeneity Q 153.1487 DF 3 Significance level P < 0.0001 I2 (inconsistency) 98.04% 95% CI for I2 96.75 to 98.82                  116  Pooled proportion of AF patients demonstrating knowledge that OATs increase the risk of bleeding:            OAT increases the risk of bleeding0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionAmara 2015Koponen 2007Lane 2005Lip 2002Rewiuk 2007St-louis 2003Desteghe 2016Total (fixed effects)Total (random effects)117  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Amara 2015 1147 80.122 77.693 to 82.396 52.35 15.27 Koponen 2007 200 82.000 75.962 to 87.063 9.17 14.63 Lane 2005 93 39.785 29.776 to 50.463 4.29 13.83 Lip 2002 119 45.378 36.231 to 54.761 5.47 14.14 Rewiuk 2007 61 73.770 60.929 to 84.204 2.83 13.13 St-louis 2003 100 67.000 56.883 to 76.080 4.61 13.93 Desteghe 2016 466 64.807 60.280 to 69.144 21.30 15.07 Total (fixed effects) 2186 73.138 71.230 to 74.984 100.00 100.00 Total (random effects) 2186 65.513 54.071 to 76.111 100.00 100.00  Test for heterogeneity Q 140.6656 DF 6 Significance level P < 0.0001 I2 (inconsistency) 95.73% 95% CI for I2 93.25 to 97.31              118  Pooled proportion of AF patients who are able to recognize emergency situations:            Recognise emergency situations0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionMcCabe 2008Rewiuk 2007Total (fixed effects)Total (random effects)119  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random McCabe 2008 100 54.000 43.741 to 64.016 61.96 61.96 Rewiuk 2007 61 59.016 45.678 to 71.450 38.04 38.04 Total (fixed effects) 161 55.836 47.859 to 63.597 100.00 100.00 Total (random effects) 161 55.836 48.174 to 63.361 100.00 100.00  Test for heterogeneity Q 0.3772 DF 1 Significance level P = 0.5391 I2 (inconsistency) 0.00% 95% CI for I2 0.00 to 0.00                     120  Pooled proportion of AF patients who are able to recognize signs of over-dosage:            Recognise signs of over-dosage0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionBaker 2011Cook-Campbell 2010Nedeloiu 2011Total (fixed effects)Total (random effects)121  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Baker 2011 185 67.027 59.750 to 73.748 53.14 53.14 Cook-Campbell 2010 36 61.111 43.464 to 76.858 10.57 10.57 Nedeloiu 2011 126 65.873 56.898 to 74.083 36.29 36.29 Total (fixed effects) 347 65.868 60.640 to 70.826 100.00 100.00 Total (random effects) 347 65.868 60.823 to 70.740 100.00 100.00  Test for heterogeneity Q 0.5032 DF 2 Significance level P = 0.7776 I2 (inconsistency) 0.00% 95% CI for I2 0.00 to 86.67                  122  Pooled proportion of AF patients demonstrating knowledge of the required actions in-case of a missed dose:            Actions to take incase of a missed dose0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionChenot 2014Desteghe (warfarin cohort) 2016Desteghe (NOAC cohort) 2016Total (fixed effects)Total (random effects)123  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Chenot 2014 345 13.000 9.637 to 17.013 27.03 33.20 Desteghe (warfarin cohort) 2016 466 21.459 17.816 to 25.469 36.48 33.40 Desteghe (DOAC cohort) 2016 466 42.918 38.375 to 47.553 36.48 33.40 Total (fixed effects) 1277 26.153 23.763 to 28.653 100.00 100.00 Total (random effects) 1277 24.927 10.223 to 43.484 100.00 100.00  Test for heterogeneity Q 102.8148 DF 2 Significance level P < 0.0001 I2 (inconsistency) 98.05% 95% CI for I2 96.41 to 98.95                   124  Pooled proportion of AF patients demonstrating knowledge of the reasons for taking OATs:            Reasons for taking OATs0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionAmara 2015Chenot 2014Cook-Campbell 2010Frankel 2015Koponen 2007Lane 2007Lip 2002Mccabe 2008Nedeloiu 2011Rewiuk 2007St-louis 2003Desteghe 2016Total (fixed effects)Total (random effects)125  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Amara 2015 1147 90.000 88.116 to 91.675 34.75 8.59 Chenot 2014 345 95.000 92.140 to 97.048 10.47 8.52 Cook-Campbell 2010 36 93.000 79.326 to 98.806 1.12 7.76 Frankel 2015 499 63.000 58.597 to 67.248 15.13 8.55 Koponen 2007 200 74.000 67.342 to 79.932 6.08 8.45 Lane 2007 93 57.000 46.316 to 67.225 2.85 8.26 Lip 2002 119 52.000 42.653 to 61.245 3.63 8.33 Mccabe 2008 100 59.000 48.714 to 68.738 3.06 8.28 Nedeloiu 2011 126 22.200 15.284 to 30.467 3.84 8.35 Rewiuk 2007 61 30.000 18.931 to 43.088 1.88 8.08 St-louis 2003 100 38.000 28.477 to 48.254 3.06 8.28 Desteghe 2016 466 76.200 72.067 to 79.997 14.13 8.55 Total (fixed effects) 3292 77.017 75.543 to 78.442 100.00 100.00 Total (random effects) 3292 64.359 50.400 to 77.173 100.00 100.00  Test of heterogeneity Q 664.0937 DF 11 Significance level P < 0.0001 I2 (inconsistency) 98.34% 95% CI for I2 97.87 to 98.71     126   Meta-analysis: AF- and stroke- related knowledge categories Pooled proportion of AF patients demonstrating knowledge that AF increases their risk of stroke:      AF increases the risk of stroke0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionKoponen 2007Lane 2005Lip 2002McCabe 2008Desteghe 2016Lee 2012Total (fixed effects)Total (random effects)127  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Koponen 2007 200 75.000 68.404 to 80.839 19.07 17.29 Lane 2005 93 54.000 43.349 to 64.389 8.92 16.21 Lip 2002 119 47.000 37.789 to 56.363 11.39 16.64 McCabe 2008 100 46.000 35.984 to 56.259 9.58 16.35 Desteghe 2016 466 66.300 61.808 to 70.584 44.31 17.89 Lee 2012 70 32.900 22.132 to 45.166 6.74 15.62 Total (fixed effects) 1048 60.698 57.676 to 63.661 100.00 100.00 Total (random effects) 1048 54.274 42.425 to 65.882 100.00 100.00  Test for heterogeneity Q 66.8161 DF 5 Significance level P < 0.0001 I2 (inconsistency) 92.52% 95% CI for I2 86.45 to 95.87                  128  Pooled proportion of AF patients demonstrating knowledge of the treatment duration for AF:            Treatment duration0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionBaker 2011Chenot 2014Nedeloiu 2011Total (fixed effects)Total (random effects)129  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Baker 2011 185 66.000 58.688 to 72.789 28.22 33.33 Chenot 2014 345 72.000 66.942 to 76.676 52.50 33.42 Nedeloiu 2011 126 0.000 0.000 to 2.885 19.27 33.24 Total (fixed effects) 656 52.214 48.322 to 56.086 100.00 100.00 Total (random effects) 656 38.462 1.580 to 87.663 100.00 100.00  Test for heterogeneity Q 368.5093 DF 2 Significance level P < 0.0001 I2 (inconsistency) 99.46% 95% CI for I2 99.19 to 99.64                   130  Pooled proportion of AF patients demonstrating knowledge of their diagnosis:           Ones' own diagnosis0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionLane 2005Lip 2002Desteghe 2016Lee 2012Total (fixed effects)Total (random effects)131  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Lane 2005 93 49.462 38.929 to 60.031 12.50 24.91 Lip 2002 119 63.025 53.694 to 71.692 15.96 25.02 Desteghe 2016 466 71.245 66.902 to 75.315 62.10 25.32 Lee 2012 70 0.000 0.000 to 5.133 9.44 24.75 Total (fixed effects) 748 58.715 55.101 to 62.260 100.00 100.00 Total (random effects) 748 40.764 10.853 to 75.183 100.00 100.00  Test for heterogeneity Q 224.3045 DF 3 Significance level P < 0.0001 I2 (inconsistency) 98.66% 95% CI for I2 97.91 to 99.14                  132  Pooled proportion of AF patients demonstrating knowledge that AF is a cardiac rhythm abnormality:           AF is a cardiac rhythm abnormality0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionLane 2005Desteghe 2016Lee 2012Total (fixed effects)Total (random effects)133  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Lane 2005 93 79.570 69.949 to 87.228 14.87 33.09 Desteghe 2016 466 72.961 68.684 to 76.945 73.89 34.27 Lee 2012 70 25.714 16.007 to 37.561 11.23 32.64 Total (fixed effects) 629 68.945 65.176 to 72.536 100.00 100.00 Total (random effects) 629 60.275 32.658 to 84.740 100.00 100.00  Test for heterogeneity Q 64.8172 DF 2 Significance level P < 0.0001 I2 (inconsistency) 96.91% 95% CI for I2 93.75 to 98.48                   134  Pooled proportion of AF patients demonstrating knowledge that AF can be asymptomatic:          AF can be asymptomatic0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionKoponen 2007Desteghe 2016Total (fixed effects)Total (random effects)135  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Koponen 2007 200 44.000 37.006 to 51.175 30.09 48.08 Desteghe 2016 466 30.901 26.731 to 35.316 69.91 51.92 Total (fixed effects) 666 34.776 31.163 to 38.523 100.00 100.00 Total (random effects) 666 37.117 24.882 to 50.257 100.00 100.00  Test for heterogeneity Q 10.3472 DF 1 Significance level P = 0.0013 I2 (inconsistency) 90.34% 95% CI for I2 64.87 to 97.34                     136  Pooled proportion of AF patients demonstrating knowledge that AF can be detected using pulse rate:            AF can be detected using the pulse rate0.0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1.0ProportionKoponen 2007Desteghe 2016Total (fixed effects)Total (random effects)137  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Koponen 2007 200 92.000 87.334 to 95.358 30.09 49.89 Desteghe 2016 466 43.562 39.006 to 48.200 69.91 50.11 Total (fixed effects) 666 60.312 56.488 to 64.044 100.00 100.00 Total (random effects) 666 70.805 19.069 to 99.948 100.00 100.00  Test for heterogeneity Q 175.8036 DF 1 Significance level P < 0.0001 I2 (inconsistency) 99.43% 95% CI for I2 98.99 to 99.68             138  Pooled proportion of AF patients demonstrating knowledge that AF can recur:      139  Study Sample size Proportion (%) 95% CI Weight (%) Fixed Random Koponen 2007 200 73.000 66.285 to 79.020 73.90 50.59 Lee 2012 70 30.000 19.623 to 42.133 26.10 49.41 Total (fixed effects) 270 62.152 56.097 to 67.939 100.00 100.00 Total (random effects) 270 52.008 13.340 to 89.270 100.00 100.00  Q 40.7095 DF 1 Significance level P < 0.0001 I2 (inconsistency) 97.54% 95% CI for I2 93.93 to 99.01           140  Interview guides Interview guide- Clinician Clinician interview  Patients’ frequently asked questions:   1. Which area of AF patient knowledge do you think needs most improvement? What are patient’s knowledge gaps? 2. What misconceptions do AF patients have? Are there common myths about AF, stroke, OACs, bleeding that AF patients believe in? 3. What concerns are commonly expressed by AF patients?  4. Other than talking to their HCPs, what information sources do patients refer to, to find the answer to their questions?  5. What common incorrect beliefs do patients have that affects their adherence? Current strategies to educate AF patients: 1. What aspects of AF and its therapy do you have the most trouble teaching? 2. How do you usually communicate stroke risk to patients? Do you give them numbers? the CHADS score?  Do you use graphs/Cates plots/bar charts? 3. What emotional experiences do patients usually have after being diagnosed with AF? Where do these feelings come from/ what is the cause? 4. How do you usually address patient’s emotional issues such as anxiety? What helps? 5. When do your patients usually receive education after being diagnosed with AF? 6. What feedback have you received from patients regarding the current education delivered? 7. What do you think are the shortcomings in the current way we are educating AF patients? Suggestions for educating AF patients 1. We are making an education program. What format should it be made in? web-based, app, booklet?  2. What features do you think it should have to better help understanding? 3. What features do you think should be added to the program to make it more user friendly? 4. What, if anything, do you think we should teach patients about the CHADS score, bleeding risk, and risk calculation?  5. What do you think is the best way to communicate stroke risk? 6. What do you think is the most effective way of communicating OAT risk and benefits? (ARR, RRR) 7. How long do you think the education program should be?  8. Do you have any other ideas/suggestions for the education program?    141  Interview guide- Patient Patient interview Patients’ feedback around the current education approaches in the clinic 1. Have you attended the education session for AF patients in the clinic?  If patient says NO, skip this section. 2. What did you like most about it? 3. What did you like least about it?  Patients’ commonly used information sources: 1. Is there any aspect of your condition you wish you had received more education on? 2. What sources of information have you referred to, to answer your questions?  3. Where did you learn most about your condition?  4. What are the questions/videos you have looked up on google regarding your medicines/condition?  5. Have you talked to other AF patients? What have you learnt from them that was interesting? 6. Would you like to know more about how stroke risk is calculated and what your exact risk is?  Patients’ current knowledge of their condition and medications: 1. Tell me about your AF? 2. What do you know about your medication? 3. What is stroke and how does it relate to AF? 4. What aspect of your condition do you have most trouble understanding? Patients’ expectation of an education program and their preferences 1. If you were to educate patients like you, how would you do it? What format? Direct teaching, pamphlet, video, booklet, powerpoint presentation, app? 2. Why do you prefer [the format mentioned by patient in the previous question]? 3. Do you think an education program is needed? 4. We want to make an EP in the form of video. How long should it be? 5. Have you seen other Educational videos? Like on YouTube®? What do you like about them? 6. What do you NOT like about them? 7. Do you rather have EP at home or attend workshops/classes or both?   142  Code books Code book- Clinicians Child codes Parent codes Categories Selected quotes Themes Triggers AF related knowledge gaps Perceived knowledge gaps “Erm, probably, most difficult thing is trying to support them and encourage them to carry on err, with enjoying their lives despite the diagnosis, that it’s a chronic condition, that they will have to manage, that’s the, probably the biggest thing is , is , people understanding that it is chronic and even with all the treatments available, it still has the natural course, that it very commonly recurs, even with ablation, so that chronicity of the disease and the health condition, that’s very difficult for people to get their heads around.”  “It’s interesting when I talk to these patients they don’t necessarily make the linkages between their risk factors and their risk. They may have all these comorbidities, right?  I don’t think that females realize that they are at a higher risk than males. I don’t think that…. I don’t think if all those linkages are well made with patients.”  “…I do think that patients don’t always make the connection. So, they don’t always understand really how that INR value really is and they know they have to be in a certain number but I don’t know if they really truly make those connections between their therapeutics INR, their risk. I think some are probably on top of it but there are some patients who don’t understand all the linkages.”  “Oh they make very strange assumptions, you know…yea…I….you know….it’s…I don’t know… a chocolate bar on Tuesday and my INR was 3 on Friday so therefore that chocolate bar changed my INR or you know….just weird, weird links between INR or AF episodes, I mean funny, we all have weird stories from patients of funny things that they think were triggers, you know I had friends over and I was laughing a lot so I decided that when I laugh too much then I have AF …yea…yea…” “I would say that ...erm…I think patients’ lack of knowledge around self-management, which is really, underlying that is education because I think if they had more education, erm...or... more relevant education they would better be able to self-manage their condition.  One of the things, especially with new onset patients, for patients who are newly diagnosed with AF, I think are the ones who they get education, certainly, we know…there is no doubt that they get education, but in terms of being able to apply it and remember it, you know, at the time when they get newly diagnosed and they get all kinds of anxiety and things, it’s probably difficult for them to retain some of what it is that…that they are getting in the form of education. I think that…so…self-manage symptoms and self-managing … so when they have symptoms…whether they can manage it by themselves or whether they need to go to the hospital…they get education around that but that’s the recurring question I get from the patients. That is just …how Theme 1: Patients’ knowledge gaps and misconceptions  Description: Text coded around patients’ knowledge gaps and misconceptions with regards to any aspect of their condition and therapy.    Causes  Expecting cure Blaming activities of daily living for AF episodes Risk versus benefit of medications Medication related knowledge gaps Side effects of medications AF versus heart attack confusion Terminology confusion Heart attack versus stroke confusion INR link to risk of stroke Inability to connect concepts Comorbidities link to risk of stroke 143  do I manage...I don’t want to use the healthcare system but I...erm…often times do …especially in rural communities I do. Because my physicians tell me to use it, to use the ED [emergency department]. Because I’m not always certain if it’s doing damage to my heart if I’m…if I don’t get help to get it corrected or reversed. So, I think for those patients it’s a really big need.” AF is fatal  AF related misconceptions Misconceptions “…they think that AF itself can kill them, those flutters, those palpitations and they panic, something is wrong with their heart and it’s going to kill them.”  “People are willing to take every single natural sup [supplement] there is that promotes blood thinning even though there is no way to know how much blood thinning that’s going to confer and so that’s a challenge and some people who are very interested in knowing, they go to the internet to sources that they think are reliable and sure there are studies about natural products and they come back and question.” AF leads to heart attack Believe AF will reduce their quality of life Linking risk of stroke to symptoms Rat poison  Medication related misconceptions Natural is better Patients don’t understand ARR, RRR Reasons for not discussing individualized stroke and bleeding risk and ARR or RRR Stroke and bleeding risk communication “Yea, I don’t go into percentages, but I say…I teach them about what the CHADS score is, and how we…,  so every patient who has AF is at an increased risk for stroke, and…erm to determine what the individual’s risk of stroke is, we use CHADS score, and explain different components of the CHADS score, and that with every, erm, letter they get a point and with the “S” they get two, and the bigger the score, the bigger the risk of them having a stroke per year, but I don’t go right into you know, you are CHADS 2 so you are at a 4% risk, I don’t.” “Some people are like I hear what you say but I have heard of lawsuits in states of people dying from this and on the other hand we have had some scientists or engineers who are into numbers and want to know these. In education session we might even say that aspirin will reduce the risk of stroke by about 20% and NOACs reduce it by 2/3rd, so they can see. Usually their risk, it’s discussed on a one on one basis and it kinda depends on how much the patient wants to know too. I found that some people are not interested in hearing the numbers, they are like if you ask me to take a blood thinner, I’ll take it. Just give me what you think. while other people are like, why do I have to take this? I’m healthy then you kinda need to go into what their actual risk of stroke is, so we say that means for example 4 in a 100 people.”   “We don’t necessarily talk about CHADS score as much anymore because the new Canadian guidelines made it relatively simple, in terms of, if you are over the age of 65, then you need anticoagulation. Erm…we do talk about risk factors…each risk factor that you have, increases the risk of stroke further.”  “We don’t go through it in the education session, we used to, but it was presented in a …it was a large table with a lot of numbers and we didn’t really know how much Theme 2:  Clinicians’ experience teaching AF patients:  Description:  Text coded around clinicians’ experience in teaching AF patients. Including teaching styles they have found successful, and the education needs and challenges they have identified over the years of working with this patient population. Patients are not interested in the numbers No justification is needed for anticoagulation Adjusting conversation level to patient Reasons for discussing individualized stroke and bleeding risk and ARR or RRR Educated patients are interested Helps with resistant patients Use of CHADS65 instead of CHA2DS2-VASc Current strategies in educating patients Discussion of Relative percentages instead of 144  absolute percentages understanding there is. You know, your stroke risk is 2%, we didn’t know how much understanding there was on what that 2% is, do they get it? At least on a one on one it’s easier maybe?” “I don’t use the specific numbers, but I , what I generally say is: everybody who has had an episode of AF, has … a …erm, has a statistical increased chance of risk, but if you add another risk factor, such as…and then I list them: hypertension, heart failure, increasing age….if you add another risk factor, then that increases your risk, and there has been research done that erm, shows that if you have AF and at least and, one other risk factor, or more, the current recommendation is that you be on anticoagulation, so that’s my script, I don’t specifically, cause I know those who would want the specific number would then ask, but that’s how I open it up.” Use of descriptive words instead of numbers Use of the internet  Patients’ information sources and  clinicians concern with patients’ use of internet as an information source Current challenges in teaching patients “I haven’t really heard from patients where they typically go, other than google...which is… always …a risk, because lots of misinformation comes up on google which I think starts the anxiety for patients who have some baseline anxiety and then they read about all of these.”  “Oh, I hate Dr Google, hehehe, erm… the older population will often come back with information from their friends because an older population tends to have…. friends with the same condition, so we’ll,  I hear a lot of “my friend at bingo”, or…I’m making it up,  but you know my friend will say something…the...err… younger people will, erm, will certainly, but they will literally google it, they’ll, and they will end up on all sorts of weird sites, erm….we, err, we really encourage everybody, well actually we make it an expectation unless they have a mobility issue or something, erm, to come to our education class… we find that’s very helpful and they’ll ask the different staff members as well.” “They may be using Google and using the websites and that type of things or talking to somebody like maybe another patient who can give a lot of great experiential information but maybe giving them other incorrect information and that type of thing. I think that’s another issue in education that need to be considered.” “Well I think it’s only, yea main thing is scheduling, so it’s only for people who have the time to come down, who are motivated, so it’s basically mostly for local patients and patients who have, you know, so you are probably not hitting the people who need it most in terms of the low socioeconomic status and people who live far away, so I think that’s sort of one of the main barriers to our current model where they have to physically come to the education.” “Yea, there are some patients who are just like, I’m fine, if I need it I’m gonna take it, but if you are looking at long term persistence and adherence with these medications I think it’s really important to have a good education program.”  “I mean language is always a huge barrier, and…just their, their general understanding, It’s a lot harder to teach patients at bed side when you don’t have Family, friends as sources of information Unreliability Bias Inaccurate  Reaching hard to reach patients Challenges with the current education model Lack of persistence Language barrier Other challenges 145  the… the visual aids that you, that I did when I would teach at the educations sessions and we had animations that showed what AF is. So definitely having, an online, even a portable, online education tool to help teach these patients, would be very helpful, erm. I know, heh, that some patients, education session at Hospital X, they would have already started on treatment so they would be on, you know, bisoprolol 5 mg already and they would already be having the somnolence side effects of Beta blocker, so they would show up at the education session and they would kind of fall asleep…. so something that is a little bit more interactive may help them be more engaged in the education session.” Unnecessary fear of death or heart attack Sources of anxiety Patients’ emotional education needs “Some people are very symptomatic and it’s very bothersome, they worry about when is my next one gonna happen and they don’t do their usual activities or travel, so it can impact that way.” “Yea, I see I think most of it …most of it…comes from…like…their anxiety, comes… they are not quite sure what’s going on or if they have a long episode of having symptoms or really even intermittent symptoms and those types of things, so I think symptoms is a great deal of anxiety …. I think that some of the anxiety comes from the interference of AF with their lives like in terms of not being able to socialize and not being able to do the same level of activity, that’s what patients talk about their anxiety coming…erm…er…erm…  and just unpredictability …. that’s a large thing ...that AF is unpredictable, they don’t…they don’t know when to expect it, so they do have anxiety just on the uncertainty of when they might get another episode, so I think it has lots to do with symptoms, the extent of the symptoms how long they have the symptoms...some patients think it’s one of the worst things and one other patient thinks it’s mild. I think that’s where quite a bit of it comes, the impact… the anxiety to the extent that its impacting their life.”   “Erm, not too often, … other than those patients are very, first diagnosed, that are very symptomatic have a lot of anxiety around their AF, because they think that AF itself can kill them, those flutters, those palpitations and they panic, something is wrong with their heart and it’s going to kill them. Helping them understand, palpitations is part of their AF symptoms, not everybody feels palpitations, but that that in itself isn’t a risk for patients dying.” “Well, certainly in my own experience, and I say I haven’t been providing care to AF patients for a while and that is that most of the anxiety was largely associated with those that had high symptom burden, so those with palpitations and other symptoms and I think we sometimes forget how debilitating these symptoms can be, for people, and also the panic of when it’s happening, it’s not knowing, you know, if things that are gonna…, you know, you know become more complex quite quickly, so some people have really high symptom burden so…erm, yea,  particularly palpitations or things like that, it can be an awful sensation, to have, and it can be very frightening, Unpredictability of the episodes Fear of initiating an episode Anxiety on potential impact on quality of life Pathophysiology of AF and its irrelevance to heart attack Techniques that have proven helpful in reducing the anxiety Spectrum of AF from asymptomatic to highly symptomatic Emphasizing that AF is not fatal Education on self-management and quality of life Anxiety and symptoms intensity The factors affecting anxiety 146  Anxiety and the disease timeline so people who have high symptom burden may have anxiety during their symptoms, but also anxiety about: “wow, I’m not gonna do that because it will come back”” “Well, certainly education goes a long way. Educational session and reassuring them that it is not an immediate life-threatening arrhythmia often takes away some of the anxiety, and reassuring them that, erm, there is treatment options available, both from an anticoagulant perspective and a rhythm perspective.”  Quality of life education Empowering patients Suggestions for the content of an AF education program. “Erm, stroke risk and how its assessed, in other words it’s not how you feel that tells us whether you are at risk of stroke or not. The fact that it’s a manageable, treatable disease, that it can be managed, and the fact that it’s very common and, not deadly.” “I think, just supportiveness, that this is a chronic condition, that, erm, if, if properly managed, should not impact your quality of life and your enjoyment, you know your enjoyment of the thing you enjoy,  think that, I think if you can hang your hat on that, giving them that positive….that, this is well managed, you should have a good quality of life, because I watch people when they come in and they are that anxious, and I say to them, this is not life threatening, this is a chronic condition, it seems to bring down their anxiety a little, yes you can travel, yes you can take you dog for a walk.” “This is not fatal, it’s not a heart attack, it doesn’t cause a heart attack, it’s treatable…erm… Lots of people have it, lots of people live with it…and…and…live healthy lives, err….it doesn’t necessarily have to be limiting in what you do, err… that you may not find a trigger…you know…..and that it’s fine if you can but if you can’t you have to accept that you just have AF and quit worrying that you caused it.” Theme 3:  Clinicians’ suggestions for an AF education program.  Description: Text coded around clinicians’ suggestions for education programs designed for AF patients. Self-management skills  Emphasis on the AF spectrum Correction of common Misconceptions and Knowledge gap   Emphasis on chronic, progressive, unpredictable and nonfatal nature of AF AF is manageable Addressing patients’ sources of anxiety AF does not lead to heart attack AF does not lead to death Big font Design Suggestions for the design and delivery of an AF education program “Sticking to the 30 minutes I think is gonna be really important and even though you wanna jam so much in there sometimes less is more.”  “If it’s just strictly on blood thinner, I would say not more than half hour, maybe? I mean we have, our education session we go through a great amount of information in a fairly short period of time. It’s far different setting you know classroom setting versus sitting in front of the computer, but we start losing interest after about 45 minutes, so I would say 30 minutes or 20 minutes if you can.  I know it’s a lot of information to present and you don’t want to represent it in such an overwhelming manner that they really lose interest because it’s so fast.”  “Erm, yea, I mean I guess, it’s gonna depend on how it’s available to people, yea obviously large part of our population is older, you know , less computer literate so the easier access to it and the less hoops they have to jump through, to get to it  you know, not to go to a site and then another link to another part and then a link to another, just ease right to information, I think probably would be important.” Slow animation Less words, more pictures Simple, clear instructions Everything in one place Easily accessible Delivery Less links  147   Gives sense of community Reasons for including patient testimonials Patient testimonials “Erm, you know I think the kind of people explaining, you know, when they got diagnosed how they felt, the emotions they went through, their fear, you know, but then I learned blah blah blah and I talked to my Doctor and my cardiologist and I got on medications and I’m back at the gym and that I really was upset at first… I thought, you know, it was the end of the world but now I’ve realized that it can be managed and I can live with it.” “…I think having patients who are just doing well and are on a blood thinner. Haven’t had a stroke or bleed, I continue leaving my life as I would, kind of normally, you know, cause that’s what patients kinda wanna know, that they are not going to have any abnormal life and that they can continue to do what they normally would do… and even someone who’s like “oh, I noticed my nose was bleeding or I noticed this nuisance bleeding, this is what they did… this is the investigations that they did and I’m still on blood thinners and I’m okay”  “You could have a patient, who has had a stroke, haha almost like a scare tactic, for patients, but again… I don’t know. I don’t know…if that’s the right approach, to take. I definitely talk to patients about stroke and, you know what, if they have a stroke the chances of mortality and the decreased quality of life…and you know that these equates sever things but again you have to talk to them again the same about bleeding, if they have a ICH [intracranial hemorrhage]. It’s difficult to then have somebody, a patient testimonial saying oh if you do this everything will be rosy, because that is not the reality of stroke prevention in AF.” “Yea, I think mixture of like videos, I think it’d be kind of neat, to have a patient video, like an actual people talking, like their experience, certainly those kinds of things that are already available, so I feel like another component of that development is not not re-inventing the wheel, it’s kind of tying into things that are kind of already available. But yea I think people respond really well to seeing a patient, and hearing from a patient who have had a lot of interventions versus who don’t. Again, I think the conversation around stroke is really important, what that decision-making process look like, someone, just because, you know a patient may not know what to do.” “These [patient testimonials] are just experience they may not express your experience. Maybe it’s not even the treatment story. Maybe it’s about, what did you ask your doctor, when considering your stroke risk and have someone become rather than talking about the treatment piece of “yes, take this anticoagulation”, more kind of, you know someone saying, “I didn’t realize I was at risk of stroke, and these are some of the things I learnt, and these are some of the questions I asked.”  So I think Effective teaching technique Reduces anxiety Emotions when first diagnosed Suggested content for testimonials Adherence related stories Stories about quality of life Experiences  Bleeding events Anecdotal and not generalizable Concerns with testimonials Misleading 148  there are a number of ways to address the patient story that doesn’t get you in these trouble, because I agree every journey is very unique.” “I think it’s helpful for patients to know that they are not the only one going through it and there is somebody out there who has the…had the experience that they are going through, it could be a number of different people cause every body’s experience is different, so if they can relate to one of them on there or something like that then er, that...that can be helpful.”  “Erm, well I’m just trying to think what that [patient testimonial] would look like, would you have a patient saying I have AF, and I have been on, apixaban…for….7 years and I never had a stroke and I never had a bleed, and I don’t know, because it doesn’t take away that it still might. You know what I mean, so I don’t know if the testimonials would be that helpful.”            149  Code book- Patients Child codes Parent codes Categories Selected quotes Themes Fear of unknown  Reasons for emotions and their sources Emotional appraisal of the diagnosis “Well heart condition is scary, right? cause it’s next to cancer ..for …shortening your life, so of course I was concerned, because well first of all I didn’t even know what AF was and second I didn’t know just how..erm..what the..erm.. short term effects versus the long-term effects…I think the anxiety of it, more than anything… not knowing …not knowing is what scares you, once you know a little bit your anxiety decreases.” “I was paralyzed with it, erm, where I was working at the time, they were gonna lay off one of the junior workers and I walked in and I said lay me off…because, I can’t, I was so afraid, it was gonna do me in this job and they didn’t want…no, no, no, you are the most senior, I said no, I need to go on medical leave, I have to deal with this. At that time it felt like a football team going on in my chest and I looked down on my chest and like jeez can you see it going up and down.” “What causes it’s important. The unknown is what’s scary, right? What are the effects on me?” “We didn’t know what we were dealing with, and we were seeing lots of stuff that didn’t apply to us. We didn’t know if it applied to us or not, is this what we are having or not what we are having.”  “In the beginning, to tell you the truth, I was absolutely, err, frightened beyond belief. What was going on with me, because I just didn’t understand it, and, I… it wasn’t until I went and got all these brochures and started reading about it, that I got a little bit more information.” “The doctors and the nurses spent a lot of time educating us with the details, because we didn’t know… and knowledge is everything because… or..or…80%,  because, then it can reduce the anxiety if you know, you know when to worry, if you don’t know, or you are uncertain…” “I was scared, what it was, when I was having, that I was gonna die, I really thought I was gonna die, it was so scary, and I was, I thought I was pretty healthy before that and for my heart to start doing that it was absolutely frightening.” “If I have something where I could have read more about it all, like once they diagnosed me with the type of AF I had, erm, I think I would have felt a lot better knowing what the different options I, that were kind of available to me, and that it Theme 1: Emotional appraisal of the diagnosis  Description: Text coded around patients’ sources of anxiety and their emotional education needs. Fear of death Anxiety about anxiety Anxiety about the next episode Anxiety about inducing the next episode Receiving too much information  Feeling in control What helps with the anxiety Learning about AF Learning that AF is prevalent  Reading on AF Discussion with care provider 150  wasn’t to death. That was kind of the thing that bothered me the most, that, this is…I’m too young to dye, you know, this is ridiculous.” “It started affecting my life in general. I love to ride the bicycle. Riding the bicycle despite my size, erm does all kinds of good things for me, mentally but now I don’t feel like it’s appropriate to ride hills. I don’t know what’s gonna happen, I don’t know whether the extra strain on my heart is gonna cause me to faint again. I don’t wanna, I ride on the road, and the idiots in this part of the world they just run over you, in the car.” Mayo clinic web-based sources of information Information  sources “Normally it would be a doctor, my normal GP[general practitioner], which we recently changed cause we moved, but ..and… I would ask him about whatever… you run into other people who have had it, and either had the ablation done or not and they are on whatever, so we sit around and chit chat and you notice, you find out that the way it happened to them is way different than mine ... and ...err… or not, I mean because it’s been both…but mostly actually people I run into, errr, had it much more frequently, err, like weekly or every month.” “I googled everything and like I said I went to the heart and stroke I got brochures, and they have some good brochures, that I actually have.” “Sure, I, I usually don’t go to …to ... erm, providers of information that I don’t know. Mayoclinic is a, is a big one, and there is a whole bunch of specialized in heart, whose names I can’t remember right now but that’s where I go.” “Hmmm, let me think. I don’t know that there was because I also go to a site called affibers.org, and , er,  I learned a lot on that site, so a lot of good information and misinformation there, but, erm, I can’t, I can’t really say that I learned anything new.” “Internet. I have to go to internet or cardiologist, I mean Doctor X, we are a kind of a friend now. We saw each other…we see each other at least every 2 months…” Theme 2: Information seeking behavior.  Descriptions: Text coded around patients’ attempts in finding the answers to their questions.  Google  Canadian sources (HSF, CSBC) Affibers.org Medical journals Education session Non-web-based sources of information Care provider brochures Other patients Organ responsible: brain vs heart Questions around AF Pathophysiology Reasons for referring to the internet “I wanted to know why it happened to me. I wanted to know what I could do to make it better, was I gonna die from this? Was I gonna have a stroke? You know, erm, it was more, more knowledge about what the condition really was, really fine tuning it down and giving me kind of a road map, cause I know everybody’s road map is different, with this condition, erm, that was basically it for me.” “Well, I looked for triggers that’s caused the condition and what other people were experiencing as triggers, finding triggers like MSG [monosodium glutamate], I didn’t realize it could trigger the problem and seeing like that was a trigger for me. Once I identified I tried avoiding MSG, of course you can’t totally avoid it. Cause What the condition really is Trigger  Questions around self-151     management of AF Sometimes I would er, and I would be consuming something with MSG in it and I would have problem.” “You know that the pumpkin, we, in here I don’t know, but in Korea, Korean people use a lot of pumpkin soup. Pumpkin soup is really good, but their pumpkin soup really threw me out on the INR, and then I looked at it on Google, YES! Some people say yes, but we are not too sure.” “Well, first of all, what causes it, because me and my wife, we had a suspicion that it was caused by some digestive, erm,,,,issues, like…er…when I first..er….encountered this, then I always had very bad heart burn and, er…and errr….I knew that something was wrong with my digestive tract right? and I was er…diagnosed with err H.Pylori, and that took a long time to get treated from, like they gave me my treatment that didn’t work and they repeated that treatment, which was unnecessary, and the Gastrologist said they should have given me stronger medications, so finally got rid of it but it took a long time and during that time I was having AF episodes, whenever I had the heartburn, errm so some doctor said that it can be triggered, errrm,  because there is a valve or something, hmm… beside your esophagus, there is some nerve that goes to the heart and it can be triggering, sigh.. so that was my mindset, right? I thought if I treated the H.Pylori thing, then it will go away... then when we came to see doctor X, he said no it’s not related , erm, you know, it can be this , not food, or at least not this kind of…so…that was…er…kind of….surprise…so when I started those were my questions and related to digestive questions and this and that, all kind of stuff on the internet and actually they did do some research, some study that confirmed that …er…that H.Pylori can cause, this sensation, the same way as , they say very hard , or , or , very strong spices can do it. Erm, even in emergency they told me if you eat something very, very spicy, it can trigger AF because it can cause the ...whatever. So those were the kind of questions…” Consequence on patients’ life Paroxysmal vs persistent AF related Knowledge gaps Knowledge gaps “Why do you think you have AF in the first place? I don’t know! I think maybe I just pissed off god…hahaha, ermmm, I’m not sure, cause I’m not, erm, well I had high blood pressure and they started treating me quite a few years ago for that but it’s been under control. Hmm, I don’t know, there is no err, I’m not sure, genetic anyway in the first place, but there is no family history of it, both my parents died fairly young they were both early 60’s, when they died, so erm, but it’s not just old people who get this, I know young people have it as well, younger people, anyway. I really have no idea! You got me!” “Erm, stress…stress and caffeine, and,…I……up until about… well, when all this started….. it all started with me one day at work…I ended up having 5 coffee, by the afternoon, like, Oh my god…. and when I got home, I only worked until 3 in the Theme 3: Knowledge gaps.    Description: Text coded around patients’ knowledge gaps about their medications, and condition. Pathophysiology Symptoms Linking activities of daily living to AF episode Thinking of AF as a symptom not a disease Triggers vs cause confusion 152  Heart failure vs AF confusion Confusion of concepts and terminology afternoon, so I was home at 3:30, erm… my heart was just going crazy and I was like “what is this?” and my doctor is just down the street, so I thought, I’m gonna go down there and see the doctor, maybe something’s wrong. So I went in there and they thought it was a silent heart attack and sent me for a ….ECG? kind of… And I guess, that was the beginning of me starting to feel it. I never felt it before.” “I think it was, a couple of thing, I was obese, then… and…erm, stress at my job, and ... I wanna say the coffee, hehehe, too much coffee…but probably those two things, obesity and a very stressful job, maybe? That’s what I’m thinking.” “I know, I know that statistically if you have high blood pressure, I guess the stats say that most AFs have high blood pressure, overweight is another one, there is a couple of others, but I don’t remember, they don’t apply to me, so I don’t remember.” “Oh, something that I’m not too sure but most people diagnose me as, just my healthy and overall ageing factor as well, so I’m not too sure. First, I think because my brother had it. And then errm, and me.” “It’s hard to know. The first time It occurred I was up skiing and I had a really stressful night, 3 teenage daughters at that time, one of them was, couple of them were kind of going wild, hehe, and I was chasing one of them around, trying to… ah it was, just, bizarre…” “We went to a Mexican restaurant, it was really good but I found Mexican food is….er…really filling and it’s ..I guess I have trouble digesting it or whatever, and I likely eat too much, and that set it off, I think, just, there wasn’t any great deal of exercise going on, and…err.. there was great deal of alcohol, there was some wine with dinner and what not, erm, so that’s, that’s those two times, erm, it’s been a couple of times where there probably was a little bit too much drinking going on, that might have been the issue and yea…other than that I can’t think of anything else that caused mine.” CHA2DS2-VASc criteria Stroke related knowledge gap Stroke risk NOAC related knowledge gaps Medication related knowledge gaps Side effects Mechanism of action Face to face interaction Advantages of classroom setting Setting preferences “As a class is good. because people give you comments, opinions, and they have questions and you are…you don’t have that questions but you find this question interesting, you will learn as if you were asking.”   “What if it is video? Oh yes, that would be easy, especially you can stop it and do it again, from that point, you can repeat if you don’t follow the first time.”  “Well, I’m not a big fan of PowerPoint but other than that it was fine, the only draw-back for me was at that point we were…erm…  think I was…we were on the road, so I sort of had to make a point of being in Vancouver, most people live there Theme 4: Patients’ education preferences    Description: Text coded around patients’ preferences for different teaching styles and suggestions Immediate answer to questions Sense of community Other patients’ questions Other patients’ experiences 153  Generic information Disadvantages of classroom setting   and I used to and that wouldn’t have been so bad, so that’s just a personal thing for me, it was my own doing and nothing to do with the person who set up the PowerPoint. I thought the young lady was very knowledgeable, the PowerPoint presentation was very straight forward it was not confusing. Parking is terrible…hahaha”.  “When I first went to education session I didn’t have AF, I had flutter and they were talking about operations and stuff and we didn’t even know…is it for us…or somebody else…yea they were talking about ablation and surgery and pacemaker…stuff, they are just confused…” “Do you think an online education program should replace the current education program? Complementary, maybe if you have a good education program like this, then you can refocus the groups session more to questions and answers, more of an interactive thing because people will have individual …I’m not saying, you can’t learn from other people’s questions too, for sure, but it can also scare the hell out of you.”   “Well, I think a lot of people, prefer talking to people’s faces, and, erm, especially people who are afraid of computers, so I think that the classroom setting, you really, really need that for some because they are not gonna go on, they are not gonna look for what they want, they are just gonna get confused.” “Erm, if I was, if I was a patient that would say….wasn’t available, like, I couldn’t go to the clinic , and I was in the house to deal,  like maybe I lived in Prince George or St Johns, or something like that. I would really appreciate having, erm, erm something on the internet where I could plug in and maybe have a chat session and like ask questions. Like YouTube, like if there was information on YouTube, if there was something where I could, like a blog almost, where, erm, people could ask questions and questions be answered by someone that knows what they are talking about and not Dr Google and if I have something where I could have read more about it all, like once they diagnosed me with the type of AF I had, erm, I think I would have felt a lot better knowing what the different options I, that were kind of available to me, and that it wasn’t to death.” for an AF focused education program.  Commute and timing Accessible Advantages of virtual education Viable alternative to the unreliable information on the internet. Ability to pause the education Inability to answer questions Disadvantages of virtual education Not interactive CHADS core communication Stroke and bleeding risk communication Risk communication style preferences “I don’t think people would be interested to go into CHADs, I think that’s a little bit too deep. Whether the risk is 1% or 1.2% you know, what does that really mean?  I don’t think they would be interested. You could say this is low risk. I’m not sure how it helps you.” “What are the options, in terms of treatment? I’m a numbers person, so I’d like to see things expressed as numbers, so if you say, this is an option, well, okay, but how much better than that is it?” Percentage risk communication (RRR, ARR) Scare tactics Framing Adherence advice 154  Translation of clinical information in terms of patient life Self-management Content suggestions  “I think it’s really important that people realize that this is a common thing, that a lot of people have it, and…that there are, solutions, you know, it’s not the end of the line for you, and the things they wanna, some of the things they can do for you, which is.. they did tell me a lot of that stuff at the clinic.”  “Well, how is it gonna affect me, yea okay, so now I have got AF so what? What does that mean? How is that gonna affect me, well, how COULD it affect me? What can I do, to change the outcome? What will the system do, what can I do, to change the outcome? Is that possible? I still don’t know….” “Yea, I would say, erm, explain to people what , erm, common triggers are. And erm,…it could also explain, erm, what may have brought, what, erm, sort of lifestyle choices, might be…, might have created the problem in the first place. Cause I believe even after the ablation, if, erm, you go back to the same, scenario, that got you in that situation you probably are gonna have trouble again. You need to make some changes, you know, reduce stress, try to be healthier about your eating and so forth. So yea, that would all be good information to include.” Triggers  Anatomy and physiology of healthy heart The link between pathophysiology of AF and CVS physiology  Pathophysiology of AF Patient stories give hope Design Testimonials Design suggestions “I think it could easily be a half an hour especially if they can take their time and it would be nice if it was something that, erm. If you feel you got control of something, you feel more in control yourself, it kind of, it would settle me down, I know that in the beginning. It was just too many little bits and pieces from everybody, but if I could have one thing that would talk about the whole thing, I think that would have been fabulous, I really do.”  “Well, if you make it interactive and not boring and cute little cartoons, ermmm….I would say somewhere between 15-30 minutes.”  “Erm, a couple of evenings would be no problem. Couple of hours per evening. 2or 3 evenings. I would be quite happy to do that.”  “Maybe ….maybe….maybe …one good idea is to talk to people who have this treatment, I mean they the AF, they have the treatment…to talk to them, how do you feel now? Did it work for you? My first questions would be: “were you afraid?” hahahahha…sure everybody would be afraid.”  “Make the screen big because believe me, without my glasses, everything so blurry, that’s half the battle, being able to see….and colorful, old people like colors…hahahahha” “The print has to be large, no small print, for sure and…and….erm, maybe , not with too much on each page. So they can flip between pages easily, erm, that’s, Patient stories inspire FAQ interactive Ask questions Feedback section Half hour if one time Duration Allow pause and save Few links User friendly Hierarchical order Big font Easily accessible Colorful More pictures, less words 155  that’s my friend who I deal with her a lot, that’s one of the big things, it’s the print size, some of the things that apple has done, she can’t read because it’s too small. So it has to be really legible and very user friendly, that’s the big thing.” “It has to be easy for searching. Well you search, it gotta be not too broad but you gotta be really, really think about what one would use as a search word to find particularly your condition. What is the condition if it’s hypertension or ...indigestion, or whatever. Medications, the side effects of medications and this has got to be, I would say that you have got a, you have 2 levels, or maybe 3 levels. So you go, I, and you have a deeper level and then you can dig deeper and you can dig even deeper, because on the first level you want to know if that’s actually applicable to you. I don’t wanna be confronted with 10,000 pages on amiodarone, I mean that’s, you know…. But it should be there, if I need to. Whatever the number of pages. “ “there is not a hell lot of young people with AF. They tend to be in the older age group and this older age group now come from a time that computer, so it has to be EASY, easy access…”          156  Summary and interpretation of the identified knowledge gaps Blue boxes, yellow boxes and green boxes indicate the knowledge gaps and misconceptions that were identified in the clinician interviews, patient interviews, and both clinician and patient interviews, respectively.  

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