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Capturing Daily Fluctuations, Flare and Self-Management in Rheumatoid Arthritis: the Patient Perspective

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Capturing Daily Fluctuations, Flare and Self-Management in Rheumatoid Arthritis: the Patient Perspective Capturing daily fluctuations, flare and self-management in rheumatoid arthritis: The patient perspective Caroline Anne Flurey MSc A thesis submitted in partial fulfilment of the requirements of the University of the West of England, Bristol for the degree of Doctor of Philosophy Faculty of Health and Life Sciences University of the West of England, Bristol September 2012 Abstract Abstract Rheumatoid arthritis (RA) is a chronic, progressive and systemic auto- immune disease. However, there is very little research on how patients experience daily symptoms and their impact on life, nor how patients self-manage their symptoms on current treatment regimes. Flares of RA lead to major drug treatment decisions, yet there is no standardised definition of flare to support these decisions. Further, there is a dearth of literature addressing the decision-making process surrounding flare help-seeking. A mixed methods, pragmatic approach was taken to address these issues, employed iteratively in three studies: semi-structured interviews, Q-methodology and a longitudinal survey of daily symptoms for three months, alongside self-management and flare help-seeking. The interviews identified that even on current aggressive medication, in daily life patients experience continuing symptoms that vary within and between patients, and can be significant. When discussing their RA, patients used metaphors to enhance their explanations of inexplicable phenomena, such as flare. They fluctuate between living with their RA in the background, moving into the foreground, and at times having to deal with RA in the foreground. Each day patients attempt to balance the physical and emotional impact of RA with independence, a sense of normality and identity, by employing a stepped approach to self-management (“Mediation Ladder”), which leads to a life of Fluctuating Balances. When self- management is difficult, the Fluctuating Balances Model tips and their RA shifts into the foreground. The interview themes informed the two Q-methodology studies, which demonstrated four different experiences of daily life: “Feeling Good”, “Taking Active Control”, “Keeping RA in its Place” and “Struggling Through” (reported predominantly by men) and two ways in which patients differed in their decision- making process for seeking medical help for an RA flare: “Definite Decision” and “Cautious Indecision”. Items ranked as important were used to inform the survey studies, which identified that patients do not necessarily experience their highest symptoms when they are in flare. Thus two different flare-types have been identified: “Inflammatory Flare” (defined by pain and inflammation) and “Avalanche Flare” (defined by the cascading effect of inflammatory symptoms, emotions and life events). Patients are prompted to seek help when the impact of the flare becomes unmanageable. These findings have implications for clinical practice. First, the improved understanding of daily life with RA can be used to talk realistically with new patients about levels of symptoms and the Fluctuating Balances of daily life. Second, there 1 Abstract is a need for agreed terminology between patients and professionals to define flare. Third, clinicians need to be aware that men are “struggling through” with their RA. Fourth, using or responding to metaphors may facilitate communication between patients and professionals. Future research needs to develop a greater understanding of men’s experiences of RA and support needs; to design an outcome measure for the novel concept of “Avalanche Flare”; and a fully-powered study to identify daily symptom patterns and potentially predict future symptom/flare patterns that might inform treatment decisions. 2 Acknowledgements Acknowledgements I would like to thank Arthritis Research UK for funding this PhD fellowship. Also everyone who participated in this research, thank you for your time, enthusiasm and commitment. To my patient research partners Pam Richards and Angela Knight, you have taught me so much more than any research paper, thank you for sharing your knowledge and experience with me. To my wonderful supervisory team: Prof Sarah Hewlett, Dr Marianne Morris, Dr Jon Pollock and Dr Rod Hughes, I have been infinitely lucky to work with you all. Sarah, I cannot express enough gratitude for every opportunity you’ve given me and for your unending support, I couldn’t have asked for a better Director of Studies. Among the many things; thank you for every draft you’ve scrutinised, every presentation you’ve listened to, putting up with my worried ramblings and my excited chattering (flight from Hong Kong springs to mind...!), for everything you’ve taught me, for developing me as a researcher, and for tirelessly being there for me. Maz, thank you so much for your support and encouragement, for the broad perspective you’ve brought to every draft you’ve read and for guiding me on the path to becoming a psychologist. Jon, thank you for your critical eye and your advice and support, particularly with the quantitative aspects of this thesis. Rod, thank you for bringing the clinical perspective to this thesis, for helping to fund my first OMERACT experience and for yours and Alison’s kind hospitality during recruitment. To Julie Taylor, Oonagh Wilson and Janet Brandling, who’ve ridden this PhD rollercoaster with me – what a ride it’s been! Thank you all for the many coffees, doughnuts, sweeties, lunches and brunches over which we’ve shared our literature, our results, our worries, our tears and most importantly our laughter. I would particularly like to thank Julie for guiding me through my first ever conference (BSR 2010, Birmingham) and for all the people you’ve introduced me to in the wider rheumatology community. Peer support really is the best support there is. Thank you all for sharing this journey with me, here’s to many years of research collaboration (and lunches) together! To our BRI aunties: Celia Almeida, Emma Dures and Tessa Sanderson, thank you for your advice, your support, for putting up with many interruptions from me and for all the conference experiences we’ve shared. Tessa and Emma, you have been my role-models, thank you for showing me what is possible. Thank you to everyone who has helped with recruitment: Dr Paul Creamer, Dr Emma Clark, Wendy Wilmott and Maggie Walsh. Thank you to all the clinical and academic staff at the rheumatology unit who have supported me in various ways over the past three years. Particularly to Prof John Kirwan for your support, the opportunities you’ve given me and for always pushing for more out of me. Thank you to the people and institutions that have helped shape, develop and inspire me prior to beginning this PhD: Hayesfield Girls’ School, Bath; University of Wales, Swansea; Staff from the Health Psychology MSc, UWE; Sally Beckett; Maggie Egan; Dawn Saunders; and Jane Birch. Thank you to my lovely friends who have provided support and welcome distractions over the past three years. Particularly to Cara Whiting, who has been constantly supportive and has patiently put up with a distracted bridesmaid. Thank you to everyone who has asked about my progress or wished me well, it has meant so much. To Jon, you have been so patient with me. Thank you for everything you’ve done to make my life easier (particularly in these past few months!), for staying by my side (despite the tears and tantrums!), for always believing in me, telling me that you’re proud of me and for making me feel special. Thank you for waiting for me, I’m back now x x x 3 Dedication To Mum and Dad, I have so much to thank you for. You’ve given me the greatest gift of all: my education. Thank you for every sacrifice you’ve made for me, for every time you’ve picked me up when I’ve stumbled, for always being there for me and always believing in me. For these reasons and many more, I dedicate this thesis to you. 4 Table of contents Table of contents Abstract................................................................................................ 1 Acknowledgements ............................................................................. 3 Table of contents ................................................................................. 5 List of figures .................................................................................... 14 List of tables ...................................................................................... 17 List of abbreviations used in this thesis.......................................... 19 Notes to the reader ............................................................................ 21 Chapter 1: Introduction to the thesis .............................................. 22 1.1 Rheumatoid Arthritis ...................................................................................... 22 1.2 Arthitis Research UK ...................................................................................... 23 1.3 Academic rheumatology unit ......................................................................... 23 1.4 The researcher ................................................................................................ 23 1.4.1 Prior knowledge .................................................................................... 23 1.4.2 Epistemological position ....................................................................... 23 1.5 Summary of rationale, aims and research questions .................................. 24 1.5.1 Thesis rationale ...................................................................................
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