Foot Health Education For People with Rheumatoid Arthritis Andrea Graham School of Health Science University of Salford, UK Submitted in partial fulfilment of the requirements of the Degree of Doctor of Philosophy, March 2018 1 Table of Contents List of Figures………………………………………………………………………..Page 4 List of Tables…………………………………………………………………………Page 5 Acknowledgements…………………………………………………………………Page 6 Declaration of Originality…………………………………………………………..Page 7 Abstract……………………………………………………………………………….Page 8 Chapter 1……………………………………………………………………………...Page 9 1.1 Introduction – the research in context…………………………………..Page 9 1.1.1 Patient education and the podiatry profession……………………………………Page 9 1.1.2 The current context of foot health education for people with rheumatoid arthritis………………………………………………………………………………...Page 10 1.1.3 The personal context………………………………………………………………...Page 12 1.2 The research aims and objectives……………………………………...Page 16 Chapter 2 – The Published works and their linking commentaries………Page 18 2.1 Paper 1 – commentary.……………………………………………………….Page 19 Paper 1 Paper 1 – Additional File 1 – Tables of included studies 2.2 Paper 2 – commentary………………………………………………………..Page 31 Paper 2 2.3 Paper 3 – commentary………………………………………………………..Page 34 Paper 3 2.4 Paper 4 – commentary………………………………………………………..Page 37 Paper 4 2.5 Paper 5 – commentary………………………………………………………..Page 41 Paper 5 Paper 5 – Additional File 2 – FHE survey results for practitioners - raw data Paper 5 – Additional File 3 – Table of results from statistical analysis Paper 5 – Additional File 4 – Free text comments from FHE survey for practitioners 2.6 Paper 6 – commentary………………………………………………………..Page 48 Paper 6 2.7 Paper 7 – commentary………………………………………………………..Page 52 Paper 7 Paper 7 – Additional File 5 – FHE survey results for people with RA – raw data Paper 7 – Additional File 6 – Table of results from statistical analysis 2.8 Summary of the published works…………………………………………..Page 58 2 Chapter 3 – Critical Review Introduction………………………………………Page 59 3.1 A critical reflection upon the author’s perceptions of patient education…..Page 60 3.2 The research in the public domain – A critical review of the methodological approaches used…………………………………………….Page 66 3.2.1 Summary…………………………………………………………………………….Page 76 3.3 A critical analysis of the wider impact of the body of work; citation analysis, download and Altmetric data, and journal impact factor…………Page 77 3.3.1 Summary……………………………………………………………………………Page 84 3.4 Knowledge translation: translating the research into practice – moving from the bench-side to the kerb-side………………………………………….Page 85 3.4.1 Summary…………………………………………………………………………….Page 96 3.5 Future developments: considerations and implications for future research……………………………………………………………………….....Page 97 Chapter 4 – Conclusions ……………………………………………………….Page 105 Chapter 5 – Appendices…………………………………………………………Page 109 5.1 Appendix A – Co-Author statements of contributed work 5.2 Appendix B – Documentary confirmation of ethical approval 5.3 Appendix C – Focus Group participant information sheets (PIS) and consent proforma for people with RA and practitioners. 5.4 Appendix D – Draft FHE Surveys 5.4.1 – Draft FHE survey for people with RA 5.4.2 – Draft FHE survey for podiatrists 5.5 Appendix E – Email permission to access JISCmail and NRAS membership, Email invites to participants and FHE survey PIS 5.5.1 – Email permission to access podiatry JISCmail and the NRAS membership via mail merger 5.5.2 – Copies of email invite to survey participants 5.5.3 - Copies of FHE survey PIS for people with RA and podiatrists 5.6 Appendix F – Copy of conference presentation hand-out for patients – British Society of Rheumatology Conference, Glasgow, 2016………Page 166 Reference List……………………………………………………………………Page 167 3 List of Figures Figure 1: The methods used within each paper and the stage of each Publication ………………………………………………………………………………..17 Figure 2: Processes of horizon development as described by Gadamer…………..60 Figure 3: Phase 1- illustrates how the qualitative components of the research align with Crotty’s four basic elements of the research process ……………………61 Figure 4: Phase 2- illustrates how the quantitative components of the research align with Crotty’s four basic elements of the research process……………............62 Figure 5: Flow chart to illustrate Sequential mixed methods design taken from Haq (2014)…………………………………………………………………………………6 Figure 6: Westfall et al, (2007) “Blue Highways on the NIH Roadmap”……………..81 Figure 7: How the portfolio of research aligns with the phases of translational research…………………………………………………………………………………….83 Figure 8: Who is the Framework for? (taken from ‘Podiatry Career and Competency Framework for Integrated Foot Care for the Foot in Inflammatory Joint Disease and Connective Tissue Disorders’ (Pilot version April, 2017 pp 6-7)…………………91 Figure 9: The key elements of the MRC development and evaluation of complex interventions framework (Campbell et al, 2000)………………………………………..96 Figure 10: A summary of key recommendations from the body of work……………108 Figure 11: A summary of key innovations from the body of work …………………..109 4 List of Tables Table (i): Author and Co-author contribution by publication……………………………7 ----------------------------------------------------------------------------------------------------------------- Tables of papers included in Narrative Review publication (paper 1) Table 1: Systematic Review papers……………………………………………………...22 Table 2: Review Randomised control trials…………………………………………......23 Table 3: Non – randomised controlled Trials and Cohort Studies…………………….27 Table 4: Questionnaire- based studies…………………………………………………..28 Table 5: Therapeutic patient education: an example of a systematic approach…….56 Table 6: table to show the results of the literature search in PubMed for comparison of data collection methods in podiatric related published research…………………...67 Table 7: Cognitive Model of Question Response (Torangeau, 1984)………………...70 Table 8: Article citations identified by Scopus, Google Scholar and Web of Science………………………………………………………………………………………73 Table 9: Altmetric score per publication and sources of data from which it is Derived………………………………………………………………………………………78 Table 10: Participant knowledge of guidelines amongst a sample of UK Podiatrists (Williams et al, 2013)……………………………………………………………………….82 Table 11: EULAR recommendations for patient education for people with inflammatory arthritis (Zangi et al, 2015)………………………………………………...94 5 Acknowledgements There are many people that I would like to acknowledge as being part of my PhD journey and as having a significant influence on the work that has been produced and published as a result of this research. I would like to express my sincere gratitude to all the people with rheumatoid arthritis (RA) that were the inspiration for this body of work; from the patients that I have treated as a practitioner to the people that were an integral part of the research process, as participants. Ailsa Bosworth, as CEO of the National Rheumatoid Arthritis Society (NRAS), deserves a particular acknowledgement for enabling me to reach out to so many people with RA and for being such a strong advocate for people with the disease. Many thanks go to the podiatry practitioners that gave their valued time, amidst busy work schedules, to be participants in all phases of the research. This work acknowledges the difficult job they do in the face of many work-related restraints. I am most indebted to Dr Anita Williams, my mentor, supervisor and strongest supporter. Anita provided infinite patience, wisdom and advice throughout the entirety of my PhD journey and encouraged me to be more and achieve more than I thought possible. Her guidance was and continues to be invaluable, without her unwavering support and endless expertise this journey would have been a much less comfortable experience. I would like to express my sincere thanks to Professor Alison Hammond, who was a key advisor in the development of the research and provided a significant amount of support and advice, especially when I first began to write for publication. Her advice and feedback was invaluable. Many thanks also to Dr John Stephenson, from Huddersfield University, who led me through the complexities of statistical analysis and reduced my ‘fear of numbers’ by a statistically significant amount. My final acknowledgement and deepest appreciation goes, of course, to my family, friends and colleagues who forbore all my highs and lows with great patience and resilience. I could not have done this without them. This one’s for you, Mum and Dad. 6 Declaration of Originality: Statements of candidates’ independent work and contributory authors by publication number. As a PhD by published works, this thesis comprises seven papers which have previously been accepted in, or submitted to, peer-reviewed journals and have been, or are to be, published in the public domain. The papers have been written in collaboration with co-authors and the extent to which the author contributed to each paper is defined in the table below and verified by collaborating authors in Appendix A. Number Authors Detail of Independent Detail of joint of contribution contribution paper 1 Andrea Graham, Undertook the literature search, Principal author of the paper Professor Alison completed the data extraction and Hammond, Dr narrative review of the literature Anita Williams 2 Andrea Graham, Conceived and created the study Principal author of the paper, Professor Alison design. conducted primary thematic Hammond, analyses Steven Walmsley, Dr Anita Williams 3 Andrea Graham, Conceived and created the study Principal author of the paper, Professor Alison design. conducted primary thematic Hammond, Dr analyses Anita Williams 4 Dr Anita Fieldwork observer for focus groups Co-author of the paper, Williams, conducted thematic Andrea Graham analyses 5 Andrea Graham, Conceived and created the study Principal author of the paper, Dr Anita design, developed, tested and conducted thematic analysis Williams modified the online survey. 6 Andrea Graham, Conceived and created the study Principal author of the paper, Dr Anita design, developed, tested and conducted thematic Williams modified the online survey, analyses conducted statistical analyses. 7 Andrea Graham, Conceived and created the study Principal author of the paper, Dr John design, developed, tested and co-conducted descriptive Stephenson, Dr modified the online survey. and inferential data Anita Williams analyses. Table (i) – Author and Co-author contribution by publication 7 Abstract Foot problems for people with rheumatoid arthritis (RA) are common resulting in significant pain, activity restriction and reduced quality of life. Provision of information and health education in respect of foot health would therefore seem to be an essential aspect of foot health management for people with RA, in order to maintain their foot health and overall well being. Although educational resources exist for this group of people, their exact needs and preferred methods of receiving education about foot health have not been formally sought. The aim of this body of work was to investigate patients’ and podiatrists’ perspectives of current foot health education provision for people with RA in the UK; firstly aiming to identify any evidence to support the use of foot health education, then exploring patient and podiatry practitioner experiences of foot health education provision. This thesis therefore presents seven works published between 2011 and 2017 that explore the perceptions of people with RA and podiatrists about foot health education provision in the UK. This body of work has been critically reviewed through; personal reflection of the author’s perceptions of patient education and in the context of the work within the public domain. The methodological approaches used, the wider impact of the work and its’ translation into practice have been critically evaluated through analysis of citation/download and Altmetric data and review of the current literature, demonstrating the works’ broad utilisation and impact. This work demonstrates an original and distinctive contribution to research design within the podiatry profession, the understanding of foot health education needs of people with RA and the continuing significant burden that diminished foot health has on this population of people. Overall, the publications within this thesis have culminated in the identification of the need for future research to develop a foot-health related educational needs analysis tool that will facilitate a more timely and tailored approach to FHE provision. 8 Chapter 1 1.1 Introduction: the research in context The purpose of this section is to provide a contextual background to the overarching development of the research focus of this thesis and the portfolio of publications contained within it. I will also reflect upon my journey both as a clinician and evolving researcher. It will provide the reader with insight into the process by which the research problem was identified and how the aims and objectives of the research evolved. Further within this thesis I will reveal how undertaking the research has challenged my personal perceptions of what ‘patient education’ is. Hence, I will share how my personal understanding can be used to develop the provision of foot health education (FHE) by clinicians. Specifically, through the publications and also conference presentations I have aimed to facilitate clinicians’ understanding of what ‘patient education’ is and how we can identify the foot health educational needs of the patients we manage with RA- related foot pathology. Patient education can be viewed as a spectrum of interventions, from basic information giving to programmes that enable behavioural change. Through enhancing the clinician’s understanding of this spectrum of educational provision and how health education and health information can be defined, we may be able to more effectively enable people with RA to understand what is meant by a ‘tailored approach’ to FHE. In doing this both the person with RA and the clinician can arrive at a mutual consensus of what the person requires and acknowledge the context within which it is required. Approaching the provision of FHE in this way can be considered not just for people with rheumatoid arthritis (RA), but across a range of people presenting with various foot pathologies. 1.1.1: Patient education and the Podiatry profession Patient education for effective foot health management is a core component of podiatric clinical practice. Foot health promotion and health education are key elements of the 2001 Podiatry Quality Assurance Agency (QAA) Benchmark statement (QAA, 2001) and the 2013 Health and Care Professions Council (HCPC) Standards of Proficiency for Chiropodists/Podiatrists (HCPC, 2013) wherein they reinforce the requirement for practitioners to: 9 “Understand the need to empower patients to manage their foot health and related issues and recognise the need to provide advice to the patient on self-management where appropriate.” (HCPC, 2013 pp 9) Research in relation to patient education (PE) and foot care appears within the published literature as early as 1975 with Hymes and Hymes’ paper in the Journal of the American Podiatry Association; “How long shall I keep these pads on?” (Hymes and Hymes, 1975) thus the concept of patient education within the profession is far from new. A search of the literature using the key words “podiatry” AND “patient education”/ “chiropody” AND “patient education” reveals 94 publications up to the current date (87 excluding those included in this thesis). The first decade of publications have no available abstracts, although the titles reveal that much of the literature was concerned with diabetes and foot health, with (Scarlett et al, 1976) publishing a pilot study of the use of diabetic foot care education. Research into foot health education in relation to diabetes has remained the dominant focus for patient education from the 1970’s up to the present day. However, a number of studies have been published within the last 10 years that focus upon foot health care advice in relation to; readability of online education resources (Sheppard et al, 2014; Rosenbaum and Ellis, 2016), plantar fasciitis (Beischer et al, 2008), falls (Cockayne et al, 2014), footwear advice (van der Zwaard et al, 2014; Farndon et al, 2016) and self-management strategies for foot care in the elderly (Waxman et al, 2003; Cockayne et al, 2014). More specifically, with the exclusion of those publications that form the basis of this thesis, research has been undertaken to establish the ability of people with RA to participate in a foot care self-management programme (Semple et al, 2009). The next section identifies the current context of FHE for people with RA. 1.1.2: The current context of foot health education for people with rheumatoid arthritis Therapeutic patient education is recognized and recommended as an integral component in the management of people with inflammatory arthropathy, including RA (Zangi et al, 2015). The last decade alone, during which this research and its’ associated publications were completed, has seen the development and publication of a number of international and national guidelines and recommendations that 10
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