Health care services for multiple sclerosis

404 Pages·2015·5.31 MB·English

by  Abigail Methley

Health care services for multiple sclerosis: The experiences of people with multiple
sclerosis and health care professionals

A thesis submitted to The University of Manchester for the degree of Doctor of
Philosophy (PhD) in the Faculty of Medical and Human Sciences

2015
Abigail Methley

School of Medicine, Institute of Population Health, Faculty of Medical and Human
Sciences
Contents
Contents ....................................................................................................................... 2
List of appendices ......................................................................................................... 6
List of tables ................................................................................................................. 7
List of figures ................................................................................................................ 8
List of boxes ................................................................................................................. 9
List of abbreviations ................................................................................................... 10
Abstract ..................................................................................................................... 11
Declaration ................................................................................................................. 12
Copyright statement .................................................................................................... 13
Acknowledgements .................................................................................................... 14
Chapter 1: Introduction .............................................................................................. 15
1.1 The scope of the thesis ..............................................................................................15
1.2 The importance of this topic.......................................................................................15
1.3 Current knowledge on this topic ...............................................................................15
1.4 Gaps in current knowledge on this topic ...................................................................15
1.5 Research questions ....................................................................................................16
1.6 The structure of the thesis .........................................................................................16
1.7 The author .................................................................................................................17
Chapter 2: Context ...................................................................................................... 19
2.1 Introduction to the chapter .......................................................................................19
2.2 Multiple Sclerosis .......................................................................................................19
2.2.1 Aetiology, prevalence and presentation ............................................................19
2.2.2 Diagnostic labelling of MS ..................................................................................20
2.2.3 Diagnosis and management ...............................................................................23
2.3 Symptom management .............................................................................................24
2.3.1 Mental health services for people with Multiple Sclerosis ...............................24
2.3.1.1 Stepped care model ...................................................................................25
2.3.1.2 Improving Access to Psychological Therapies services for people with
MH problems .........................................................................................................27
2.4 Service delivery and health care policy relevant to the care of people with MS .......27
2.4.1 NHS General Medical Services Contract ............................................................27
2.4.2 Service Commissioning ......................................................................................28
2.4.3 Patient and Public involvement in the NHS ......................................................29
2.4.4 The move to self-management ..........................................................................29
2.4.5 Policy for MS and long-term conditions .......................................................... 31
2.4.5.1 MS Clinical Guideline CG8- (National Institute of Health and Clinical
Excellence, 2003) ............................................................................................................. 32
2.4.5.2 National Service Framework for long term conditions (Department of
Health, 2005a) ...................................................................................................... 33
2.4.5.3 National audit of services .......................................................................... 34
2.5 Experiences of health care services and living with illness: MS and the wider
literature ...........................................................................................................................35
2.5.1Theories of illness experience and help-seeking .................................................35
2.5.1.1 Symptom experience ...................................................................................36
2.5.1.2 Identification of illness as ‘difference’ .........................................................36
2.5.1.3 Medical care contact ...................................................................................37
2.5.1.4 ‘Dependent’ patient role, recovery and rehabilitation ...............................38

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2.5.1.5 Summary of how these apply to candidacy and wider thesis .....................39
2.5.2 Health care experiences of people with MS ........................................................39
2.5.3 MS health care experiences of health care professionals .................................. 46
2.5.3.1 General Practitioners’ role and experiences of MS care ............................46
2.5.3.2 Practice Nurses’ role and experiences of MS care .....................................50
2.5.3.3 MS Specialist Nurses’ role and experiences of MS care .............................50
2.5.3.4 The role of wider allied health professionals ............................................52
2.6 Addressing both patient and professional experiences ............................................53
2.7 Chapter summary ......................................................................................................54
Chapter 3. A systematic review exploring the health care experiences of people with
MS ............................................................................................................................. 56
3.1 Introduction to the chapter .......................................................................................56
3.2 Introduction to the review .........................................................................................56
3.3 Objectives ..................................................................................................................56
3.4 Systematic review methods .......................................................................................57
3.4.1 Inclusion and exclusion criteria .........................................................................58
3.4.2 Search strategy ..................................................................................................59
3.4.3 Data management and quality appraisal ...........................................................60
3.5 Findings ......................................................................................................................64
3.5.1 Quality appraisals ...............................................................................................65
3.5.2 Data analysis ......................................................................................................65
3.5.2.1 Diagnosis ....................................................................................................65
3.5.2.2 Palliative care .............................................................................................68
3.5.3 Further analysis ..................................................................................................69
3.6 Discussion ..................................................................................................................70
3.6.1 Summary of review findings ..............................................................................70
3.6.2 Implications for practice and research .............................................................. 70
3.6.3 Implications for commissioning .........................................................................71
3.6.4 Strengths and limitations of the study ............................................................. 72
Chapter 4: Methodology and methods ........................................................................ 74
4.1 Background to this study/Introduction .....................................................................74
4.2 Justification for qualitative methodology ..................................................................74
4.3 Epistemological considerations .................................................................................76
4.4 Research design .........................................................................................................79
4.4.1 Semi-structured interviews as a method .......................................................... 79
4.4.2 Ethical considerations and research governance .............................................. 81
4.5 Data collection technique/process ............................................................................81
4.5.1 Sampling of participants ....................................................................................81
4.5.2 Modes of interviewing ....................................................................................... 82
4.5.3 Confidentiality and anonymity ..........................................................................83
4.6 Eligibility and recruitment strategies .........................................................................84
4.6.1 Recruitment strategies for people with MS ......................................................84
4.6.2 Recruitment strategies for General Practitioners and Practice Nurses .............85
4.6.3 Recruitment strategies for MS Specialist Nurses ...............................................87
4.7 The interview process ................................................................................................87
4.7.1 The interview process for people with MS ........................................................87
4.7.2 The interview process with professionals .........................................................88
4.8 Topic guide for people with MS ................................................................................. 89
4.9 Analysis ......................................................................................................................92
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4.9.1 Constant comparison approach .........................................................................92
4.9.2 Coding process ...................................................................................................96
4.9.2.1 Coding ..............................................................................................................96
4.9.2.2 Categorising .....................................................................................................96
4.10 Theoretical framework- the concepts of candidacy and recursivity .................... 102
4.10.1 Candidacy ....................................................................................................... 102
4.10.2 Recursivity ..................................................................................................... 106
4.11 Quality and rigour in qualitative methods ............................................................ 107
4.12 Service user involvement/PPI ............................................................................... 111
4.13 Chapter summary ................................................................................................. 112
Chapter 5: Results-The health care experiences of people with Multiple Sclerosis ....... 113
5.1 Introduction ............................................................................................................ 113
5.1.1 Sample characteristics .................................................................................... 113
5.1.1.1 People with MS ............................................................................................ 113
5.1.1.2 Demographic commentary .......................................................................... 114
5.1.1.3 Recruitment commentary ............................................................................ 116
5.2 Experience of MS .................................................................................................... 121
5.2.1 Impact of symptoms ....................................................................................... 121
5.2.2 Uncertain progression .................................................................................... 122
5.2.3 Identity and labels ........................................................................................... 123
5.3 Self-management of symptoms .............................................................................. 125
5.3.1 Expert patients ................................................................................................ 125
5.3.2 Management strategies .................................................................................. 127
5.4 Access ...................................................................................................................... 129
5.4.1 Navigation ....................................................................................................... 129
5.4.2 Timeliness and availability .............................................................................. 130
5.4.3 Staying “in the loop/system” ........................................................................... 135
5.5 Interactions with health care professionals ........................................................... 136
5.5.1 Loss of personhood: Attitude of professionals ............................................... 136
5.5.2 Professional judgements ................................................................................ 139
5.5.3 Responsiveness .............................................................................................. 140
5.6 Continuity of care ................................................................................................... 143
5.6.1 Relational continuity with health care professionals ..................................... 143
5.6.2 Variation of follow up ..................................................................................... 146
5.6.3 Coordination and communication .................................................................. 147
5.7 Chapter summary ................................................................................................... 151
Chapter 6: Results- The perspectives of health care professionals on providing care for
people with MS ......................................................................................................... 152
6.1 Introduction ........................................................................................................... 152
6.1.1 Sample characteristics .................................................................................... 155
6.1.1.1 Sample characteristics of Practice Nurses ............................................... 155
6.1.1.2 Sample characteristics of General Practitioners...................................... 156
6.1.1.3 Sample characteristics of Specialist Nurses ............................................. 158
6.2 Primary care role and role in MS care .................................................................... 161
6.2.1 Co-ordination of care ...................................................................................... 167
6.3 Patient-centred care ............................................................................................... 171
6.3.1 Holism ............................................................................................................. 171
6.3.2 Time ................................................................................................................ 178
6.3.3 Continuity of care and the professional-patient relationship ........................ 180
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6.4 Access ...................................................................................................................... 185
6.4.1 Access to primary care .................................................................................... 185
6.4.2 Access to community and specialist care ....................................................... 189
6.4.2.1 Access to psychological services ................................................................... 193
6.4.3 Facilitating access to care .............................................................................. 196
6.5 Management of MS ................................................................................................ 198
6.5.1 Unpredictability .............................................................................................. 198
6.5.2 Rarity and lack of specialist knowledge .......................................................... 199
6.5.3 Role of specialist MS services ......................................................................... 201
6.6 Chapter summary ................................................................................................... 203
Chapter 7: Discussion ................................................................................................. 205
7.1 Introduction ............................................................................................................ 205
7.2 Summary of main findings ...................................................................................... 206
7.2.1 Summary of findings from people with MS .................................................... 206
7.2.2 Summary of findings from health care professionals ..................................... 207
7.2.3 Similarities and differences between people with MS and professionals’
experiences of care for MS ...................................................................................... 208
7.3 Comparison with the literature .............................................................................. 211
7.3.1 Identification of candidacy ............................................................................. 211
7.3.1.1 Identification of candidacy for physical symptoms ................................ 211
7.3.1.2 Identification of candidacy for psychological symptoms ....................... 214
7.3.2 Navigation ....................................................................................................... 217
7.3.2.1 Information as a tool for navigation: the rise of the expert patient ...... 217
7.3.2.2 The choice between continuity of care, access and specialist knowledge
............................................................................................................................. 219
7.3.3 Permeability (access) and operating conditions ............................................. 222
7.3.4 Appearances at health care ............................................................................ 227
7.3.5 Adjudication .................................................................................................... 227
7.3.5.1 Referral thresholds ................................................................................. 229
7.3.5.2 Medically unexplained symptoms and legitimacy .................................. 232
7.3.5.3 Adjudication of psychological needs ...................................................... 235
7.3.6 Offers and resistance ...................................................................................... 237
7.4 Beyond candidacy ................................................................................................... 238
7.4.1. Self-management and multimorbidity .......................................................... 238
7.4.2 Patient centredness ........................................................................................ 239
7.5 Strengths and limitations of my study .................................................................... 240
7.5.1 Critique of recruitment ................................................................................... 240
7.5.2 Critique of methods ........................................................................................ 243
7.6 Reflections on the study ......................................................................................... 245
7.7 The role of the researcher and reflexivity .............................................................. 246
7.8 Wider implications for research, education, policy and practice ........................... 232
7.8.1 Psychological needs of people with MS .......................................................... 232
7.8.2 Education of both people with MS and professionals .................................... 233
7.8.3 Implications for policy: commissioning new models of care ........................... 250
7.8.4 Implications for practice: MS Specialist Nurses ............................................... 252
7.8.5 Implications for practice: GPs .......................................................................... 253
7.8.6 Implications for practice: Practice Nurses ....................................................... 254
7.9 Chapter summary ................................................................................................... 255
References ......................................................................................................................... 256
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Word count: 85, 219

List of appendices
A. Health Expectations research article .................................................................... 295
B. BMC Health Services research article ................................................................... 307
C. Way Ahead MS Trust review article ...................................................................... 338
D. Systematic review search strategy ........................................................................ 341
E. Qualitative assessment tool- CASP ....................................................................... 343
F. NHS Research Ethics approval ............................................................................... 346
G. University Ethics Committee approval .................................................................. 350
H. NHS Research and Development approval ........................................................... 351
I. Study documents .................................................................................................. 352
I-i GP Practice letter of invitation ............................................................. 352
I-ii Participant Information Sheet for GPs ................................................. 353
I-iii Invitation letter to participants from their GP surgery ........................ 356
I-iv Participant Information Sheet for participants with MS ...................... 357
I-v Topic guide for GPs v1 .......................................................................... 360
I-vi Demographic questionnaire for GPs .................................................... 361
I-vii Letter of invitation to Practice Nurse ................................................... 363
I-viii Participant Information Sheet for Practice Nurses .............................. 364
I-ix Letter of invitation to Multiple Sclerosis Specialist Nurses ................. 366
I-x Topic guide for Practice Nurse v2 ........................................................ 367
I-xi Topic guide for MS Specialist Nurse v2 ................................................ 368
I-xii Demographic questionnaire for Practice Nurses ................................. 369
I-xiii Demographic questionnaire for MS Specialist Nurses ......................... 370
I-xiv Invitation letter to the MS Society ....................................................... 371
I-xv Publicity poster/flyer ............................................................................ 372
I-xvi Recruitment advertisement for University intranet ............................ 373
I-xvii Topic guide for people with MS v1 ...................................................... 374
I-xviii Topic guide for people with MS v4 ...................................................... 375
I-xix Demographic questionnaire for people with MS ................................. 377
I-xx Consent form for GPs ........................................................................... 380
I-xxi Consent form for Practice Nurses ........................................................ 381
I-xxii Consent form for MS Specialist Nurses ................................................ 382
I-xxiii Consent form for participants with MS ................................................ 383
J. Coding framework for interviews with people with MS ..................................... 384
K. Conferences at which I have presented/been accepted to present ................. 402
L. Dissemination plan and future outputs ............................................................ 403

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List of tables
Table 1. Diagnostic labelling of MS .......................................................................................21
Table 2. Recommendations from the MS NICE guideline CG8 (National Institute of
Health and Clinical Excellence, 2003) ....................................................................................32
Table 3. National Service Framework for long term conditions, quality requirements .......33
Table 4. Reported themes from the free text boxes of the 2011 National Audit .................35
Table 5. Key themes from the literature investigating health care experiences of people
with MS ..................................................................................................................................45
Table 6. Key gaps in the literature and how my PhD addressed them .................................55
Table 7. Stages of completing a systematic narrative review ...............................................57
Table 8. Characteristics of included systematic review studies (n = 5) .................................62
Table 9. Epistemological stances and their relevance to this research ............................... 77
Table 10. Interview types and their relevance to this research ............................................80
Table 11. The overall process of constant comparison analysis followed the systematic
process outlined in Boeije (2002) ..........................................................................................94
Table 12. An example constant comparison table of ‘access’ categories for people with
MS ..........................................................................................................................................98
Table 13. An example constant comparison table of inter-professional categories of
‘patient-centred care’ ......................................................................................................... 100
Table 14. Quality criteria for qualitative research ............................................................. 108
Table 15. Demographic characteristics of people with MS................................................ 114
Table 16. Clinical characteristics of people with MS .......................................................... 116
Table 17 Differences in findings between health care professional groups ...................... 153
Table 18. Demographic characteristics of Practice Nurses ................................................ 155
Table 19. Demographic characteristics of General Practitioners ....................................... 156
Table 20. Demographic characteristics of Specialist Nurses .............................................. 158
Table 21. Key points presented in the discussion chapter ................................................. 205

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List of figures
Figure 1. The stepped care model ........................................................................................ 26
Figure 2. PRISMA diagram detailing the process of searching and identifying relevant
papers ....................................................................................................................................60
Figure 3. Presentation of themes from diagnosis and palliative care studies ......................69
Figure 4. The concept of candidacy (Dixon-Woods et al., 2006) ....................................... 104
Figure 5. A thematic map showing the themes and categories of people with MS’
experiences of health care ................................................................................................. 117
Figure 6. The pathway of participant 13: Secondary progressive MS ................................ 119
Figure 7. The pathway of participant 1: Relapsing-remitting MS ..................................... 120
Figure 8. A thematic map showing the themes and categories of professionals’
experiences of MS care ...................................................................................................... 160
Figure 9. The extended concept of candidacy ................................................................... 210

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List of boxes
Box 1. Symptoms of MS ........................................................................................................19
Box 2. Recruitment strategies ...............................................................................................85
Box 3. Examples of memos....................................................................................................91
Box 4. Example of data ....................................................................................................... 106

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List of abbreviations

CCG Clinical Commissioning Group

DMT Disease Modifying Treatment

GP General Practitioner

IAPT Improving Access to Psychological Therapies

MS Multiple Sclerosis

NHS National Health Service

NICE National Institute for Health and Clinical Excellence
NSF National Service Framework

PCT Primary Care Trust

PN Practice Nurse
SN Specialist Nurse

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