Capturing daily fluctuations, flare and self- management in rheumatoid arthritis

458 Pages·2017·4.41 MB·English

Flurey, C. A. (2012) Capturing daily fluctuations, flare and self-
management in rheumatoid arthritis: The patient perspective. PhD,
UniversityoftheWestofEngland. Availablefrom: http://eprints.uwe.ac.uk/18544
We recommend you cite the published version.
The publisher’s URL is:
http://eprints.uwe.ac.uk/18544/
Refereed: No
(no note)
Disclaimer
UWEhasobtainedwarrantiesfromalldepositorsastotheirtitleinthematerial
deposited and as to their right to deposit such material.
UWE makes no representation or warranties of commercial utility, title, or fit-
nessforaparticularpurposeoranyotherwarranty,expressorimpliedinrespect
of any material deposited.
UWE makes no representation that the use of the materials will not infringe
any patent, copyright, trademark or other property or proprietary rights.
UWE accepts no liability for any infringement of intellectual property rights
inanymaterialdepositedbutwillremovesuchmaterialfrompublicviewpend-
ing investigation in the event of an allegation of any such infringement.
PLEASE SCROLL DOWN FOR TEXT.
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 .................................................................................... 24
1.5.2 Thesis aims .......................................................................................... 24
1.5.3 Thesis research questions .................................................................... 24
1.6 Thesis structure .............................................................................................. 25
Chapter 2: Daily Symptoms of Rheumatoid Arthritis and Flare .... 26
2.1 Fluctuations of RA symptoms in daily life .................................................... 26
2.1.1 Joint stiffness and synovitis ................................................................. 26
2.1.1.1 Synovitis ..................................................................................................... 26
2.1.1.2 Joint stiffness .............................................................................................. 27
2.1.2 Disability .............................................................................................. 28
2.1.3 Pain ..................................................................................................... 29
2.1.4 Fatigue ................................................................................................ 30
2.1.5 Sleep disturbance ................................................................................ 32
2.2 The impact of RA on daily life ....................................................................... 33
2.2.1 Loss of participation ............................................................................. 34
2.2.2 Psychological well-being ...................................................................... 35
2.2.3 Paid employment and RA .................................................................... 36
2.3 Flare ................................................................................................................ 37
2.3.1 Patterns of flares ................................................................................. 38
2.3.2 Defining flare in clinical practice .......................................................... 39
2.3.3 Defining flare in clinical trials of medication ......................................... 39
5
Table of contents
2.3.4 Defining flare from the patient’s perspective ........................................ 41
2.3.5 Early warning signs of flare.................................................................. 43
2.3.6 Defining flare from the professional’s perspective ............................... 45
2.3.7 Patient versus professional perspective .............................................. 45
2.4 Summary.......................................................................................................... 46
Chapter 3: Coping, self-management and adaptation .................... 47
3.1 Coping.............................................................................................................. 47
3.1.1 Crisis Theory ........................................................................................ 47
3.1.2 Action-focused and avoidance-focused coping .................................... 49
3.1.3 Emotion-focused and problem-focused coping..................................... 50
3.2 Emotion-Focused Coping .............................................................................. 51
3.2.1 Normalisation........................................................................................ 51
3.2.2 Social Support ...................................................................................... 51
3.3 Problem-Focused Coping .............................................................................. 53
3.3.1 Self-Management ................................................................................. 53
3.3.1.1 Joint protection ........................................................................................... 53
3.3.1.2 Technical aids ............................................................................................. 53
3.3.1.3 Rest ............................................................................................................ 54
3.3.1.4 Exercise ..................................................................................................... 54
3.3.1.5 Pacing and planning ................................................................................... 56
3.3.1.6 Hot and cold therapies ................................................................................ 57
3.3.2 Flare self-management ......................................................................... 57
3.4 Adaptation and adjustment ............................................................................ 58
3.4.1 Practical adjustment ............................................................................. 59
3.4.2 Psychological adjustment ..................................................................... 60
3.4.3 Mastery and self-actualisation .............................................................. 60
3.5 Summary.......................................................................................................... 61
Chapter 4: Help-seeking behaviours ................................................ 63
4.1 Benefits of early help-seeking behaviours ................................................... 63
4.2 Health and illness behaviours ....................................................................... 64
4.3 Psychological models explaining help-seeking behaviours ....................... 64
4.3.1 Health Belief Model .............................................................................. 64
4.3.2 (Multi-dimensional) Health Locus of Control ......................................... 66
4.3.3 Theory of Planned Behaviour ............................................................... 67
4.3.4 Social Cognition Theory ....................................................................... 68
4.3.5 The Self-Regulatory Model ................................................................... 69
4.3.5.1 Application of the Self-Regulatory Model ..................................................... 71
4.4 Factors affecting help-seeking ...................................................................... 72
4.4.1 Gender ................................................................................................. 72
4.4.2 Social Support ...................................................................................... 73
4.4.3 Symptoms............................................................................................. 74
6
Table of contents
4.4.4 Barriers to help-seeking ........................................................................ 75
4.5 Summary.......................................................................................................... 76
4.6 Summary of the overall literature review ...................................................... 76
Chapter 5: Methodology and Methods ............................................. 78
5.1 Thesis aims ..................................................................................................... 78
5.2 Mixed methods ................................................................................................ 78
5.2.1 Traditional research paradigms and mixed methods ............................ 78
5.2.2 Rationale for mixed methods ................................................................ 79
5.2.3 A qualitatively driven model of mixed methods ..................................... 81
5.3 Patient research partner involvement ........................................................... 81
5.4 Study 1: Understanding the patient perspective (Interviews) ..................... 82
5.4.1 Objectives for Study 1 .......................................................................... 82
5.4.2 Method for Study 1: Semi-structured interviews ................................... 82
5.4.3 Identification and sampling ................................................................... 83
5.4.4 Interview process .................................................................................. 83
5.4.5 Patient research partner involvement ................................................... 85
5.4.6 Thematic analysis ................................................................................. 85
5.4.7 Thematic analysis process ................................................................... 87
5.4.7.1 Coding ........................................................................................................ 87
5.5 Study 2: Elucidating clusters of experience (Q-methodology) ................... 90
5.5.1 Objectives for Study 2 .......................................................................... 90
5.5.2 Methods for Study 2: Consensus methods ........................................... 90
5.5.3 Consensus technique comparison ........................................................ 91
5.5.4 Q-Methodology ..................................................................................... 94
5.5.5 Limitations of Q-methodology ............................................................... 95
5.5.6 Identification and sampling ................................................................... 96
5.5.7 Q-methodology process ....................................................................... 97
5.5.7.1 Developing the set of statements (Q-set) ..................................................... 97
5.5.7.2 Participant numbers (P-set) ......................................................................... 97
5.5.7.3 Sorting the statements ................................................................................ 98
5.5.8 Patient research partner involvement ................................................... 99
5.5.9 Q-methodology analysis ....................................................................... 99
5.5.9.1 Factor extraction and rotation ...................................................................... 99
5.5.9.2 Deciding how many factors to extract ........................................................ 101
5.5.9.3 Z scores and factor exemplifying Q-sorts ................................................... 101
5.5.9.4 Factor interpretation .................................................................................. 102
5.6 Understanding daily life and flare help-seeking (Exploratory and
feasibility survey) .................................................................................................... 104
5.6.1 Aims and objectives for Study 3 ......................................................... 104
5.6.2 Methods for Study 3: Daily life and flare help-seeking survey ............ 104
5.6.3 Identification and sampling of patients ................................................ 105
7
Table of contents
5.6.3.1 Study 3a: Daily life: Identification and sampling ......................................... 105
5.6.3.2 Study 3b: Flare help-seeking survey: Identification and sampling ............... 105
5.6.4 Study 3a: Daily life process ................................................................ 105
5.6.5 Study 3b: Flare help-seeking survey process ..................................... 107
5.6.6 Patient partner involvement ................................................................ 107
5.6.7 Data analysis ...................................................................................... 107
5.7 Summary........................................................................................................ 108
Chapter 6: Study 1: Understanding the patient perspective
(Interviews) ...................................................................................... 109
6.1 Summary of background information ......................................................... 109
6.2 Objectives for Study 1 .................................................................................. 109
6.3 Summary of Study 1 methods ..................................................................... 109
6.4 Results ........................................................................................................... 110
6.4.1 Participants ......................................................................................... 110
6.4.2 Free-form graphs ................................................................................ 113
6.4.2.1 “How does your RA change?” .................................................................. 113
6.4.2.2 “What does a single flare look like?” .......................................................... 114
6.5 Thematic analysis of the qualitative interviews ......................................... 119
6.6 Underpinning theme: “It’s like a juggling act”: Trying to maintain a
balance ..................................................................................................................... 120
6.7 Theme 1: Living with RA in the background .............................................. 122
6.7.1 Mediating the impact of RA on daily life .............................................. 122
6.7.1.1 “It’s not going to get the better of me”: Physical impact and its mediation ... 122
6.7.1.2 “It just makes you snap”: Emotional impact and its mediation .................... 125
6.7.2 Re-defining ‘me’ .................................................................................. 127
6.7.2.1 “I am really fiercely independent”: Retaining independence ....................... 128
6.7.2.2 “You just accept it as normal”: Adapting normalities ................................... 128
6.7.2.3 “It’s just part of me”: Incorporating RA into identity ..................................... 129
6.7.2.4 “You need to be positive”: Cognitive adjustment ........................................ 130
6.7.3 Theme 1: Summary ............................................................................ 131
6.8 Theme 2: RA moving into the foreground .................................................. 133
6.8.1 Unwelcome reminders ........................................................................ 133
6.8.1.1 “I forgot that I’ve got this arthritis”: The unpredictable nature of RA ............ 133
6.8.1.2 “It’s hard for other people to understand”: Perceptions............................... 135
6.8.2 Trying to make sense of fluctuation .................................................... 137
6.8.2.1 “It’s always playing it by ear”: Uncertainty .................................................. 137
6.8.2.2 “It might go away”: Avoiding seeking medical help ..................................... 140
6.8.3 Theme 2: Summary ............................................................................ 142
6.9 Theme 3: Dealing with RA in the foreground ............................................. 143
6.9.1 Trying to regain control ....................................................................... 143
6.9.1.1 “I just try anything”: Crisis management of a flare ...................................... 144
6.9.1.2 “You just go into hibernation mode”: Social Withdrawal ............................ 145
8