Understanding and Managing Sleep Difficulties in Fibromyalgia Syndrome Alice Theadom A thesis ...

263 Pages·2011·7.36 MB·English

Sick and Tired: Understanding and Managing Sleep Difficulties
in Fibromyalgia Syndrome

Alice Theadom

A thesis submitted to Auckland University of Technology in fulfilment of the
requirements for the degree of Doctor of Philosophy (PhD)

2011

School of Occupation and Rehabilitation Studies
Faculty of Health and Environmental Sciences

Primary Supervisor: Professor Valery Feigin
Table of Contents
List of Figures ......................................................................................................................... v
List of Tables .......................................................................................................................... vi
Attestation of Authorship ..................................................................................................... vii
Co-authored Works ............................................................................................................. viii
Acknowledgments ................................................................................................................... x
Intellectual Property Rights .................................................................................................. xii
Ethical Approval .................................................................................................................. xiii
Confidential Material ........................................................................................................... xiv
Abstract ................................................................................................................................. xv
Introduction ............................................................................................................................. 1
Defining Terms Central to the Thesis .................................................................................. 3
Chapter One. The Context of Fibromyalgia Syndrome (FMS) ......................................... 5
Clinical Presentation of FMS ............................................................................................... 5
Diagnosis ............................................................................................................................. 6
Prevalence ............................................................................................................................ 9
Impact of FMS ..................................................................................................................... 9
Current Management Strategies ........................................................................................ 12
Conclusion ......................................................................................................................... 14
Chapter Two. The Role of Sleep ........................................................................................ 15
The Normal Sleep Process ................................................................................................. 15
Measuring Sleep ................................................................................................................ 20
Objective Measures ........................................................................................................... 20
Subjective Measures .......................................................................................................... 22
Affects of Poor Sleep ......................................................................................................... 27
The Links between Sleep and Pain .................................................................................... 27
Nature of Sleep Disturbance in Chronic Pain .................................................................... 29
Factors Affecting Sleep Quality in Chronic Pain .............................................................. 31
The Development and Maintenance of Sleep Difficulties in Chronic Pain ....................... 33
Clinical Implications .......................................................................................................... 36
Chapter Three. Sleep in FMS ............................................................................................. 38
Possible Underlying Physiological Mechanisms of Poor Sleep in FMS ........................... 39
Sleep Disorders in FMS ..................................................................................................... 41
Types of Sleep Difficulties Experienced in FMS .............................................................. 43
Relationships between Sleep and Pain in FMS ................................................................. 44
Managing Sleep Disturbance in FMS ................................................................................ 46
Summary ............................................................................................................................ 47
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Chapter Four. The Nature and Effect of Sleep Difficulties on Quality of Life in FMS 49
Methods ............................................................................................................................. 54
Power Calculations ............................................................................................................ 54
Participant Recruitment ..................................................................................................... 54
Outcome Measures ............................................................................................................ 55
Data Analysis ..................................................................................................................... 58
Results ............................................................................................................................... 60
Participant Characteristics ................................................................................................. 60
Descriptive Statistics ......................................................................................................... 63
Correlation Analysis .......................................................................................................... 64
Logistic Regression ........................................................................................................... 70
Discussion .......................................................................................................................... 71
The Nature of Sleep Difficulties in FMS ........................................................................... 71
The Effect of Sleep on Health Outcomes in FMS ............................................................. 72
The Relationships between Demographic Variables, Sleep and Health Outcomes in FMS73
Relationship between Negative Affect, Sleep and Health Outcomes in FMS ................... 74
The Influence of Coping on Health Outcomes in FMS ..................................................... 74
Strengths and Limitations .................................................................................................. 75
Future Directions ............................................................................................................... 77
Implications ....................................................................................................................... 77
Summary ............................................................................................................................ 77
Chapter Five. Investigation of the Factors that may Influence Sleep Quality in FMS . 79
Dysfunctional Beliefs about Sleep ..................................................................................... 79
Stress .................................................................................................................................. 81
Methods ............................................................................................................................. 82
Power Calculations ............................................................................................................ 83
Participant Recruitment ..................................................................................................... 83
Outcome Measures ............................................................................................................ 84
Data Analysis ..................................................................................................................... 87
Results ............................................................................................................................... 87
Differences between FMS Participants and Controls ........................................................ 92
Correlation Analysis .......................................................................................................... 97
Logistic Regression ........................................................................................................... 99
Discussion ........................................................................................................................ 100
Strengths and Limitations ................................................................................................ 103
Implications ..................................................................................................................... 105
Summary .......................................................................................................................... 105
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Chapter Six. Exploring the Sleep Experience for Patients with FMS .......................... 107
Methodology .................................................................................................................... 107
Methods ........................................................................................................................... 110
Participant Recruitment ................................................................................................... 110
Data Collection ................................................................................................................ 110
Data Analysis ................................................................................................................... 112
Rigour .............................................................................................................................. 114
Results ............................................................................................................................. 114
Discussion ........................................................................................................................ 124
Strength and Limitations.................................................................................................. 127
Implications ..................................................................................................................... 129
Summary .......................................................................................................................... 129
Chapter Seven. Investigating the Effects of Mindfulness on Sleep Quality in FMS .. 130
The Mindfulness Approach ............................................................................................. 131
The Mindfulness Body Scan ............................................................................................ 133
Method ............................................................................................................................. 134
Participant Recruitment ................................................................................................... 134
Outcome Measures: ......................................................................................................... 135
Procedure ......................................................................................................................... 136
The Interventions ............................................................................................................. 137
Statistical Analysis: ......................................................................................................... 138
Results ............................................................................................................................. 138
Repeated Measures ANOVA analysis ............................................................................. 141
Discussion ........................................................................................................................ 145
Strengths and Limitations ................................................................................................ 146
Implications ..................................................................................................................... 149
Summary .......................................................................................................................... 150
Chapter Eight. Integrated Discussion ............................................................................ 151
Objective One. The Nature and Extent of Sleep Difficulties in FMS ............................. 151
Objective Two. The Psychological Factors Affecting Sleep Quality in FMS ................. 153
Objective Three. The Effect of Sleep Quality on Symptoms and Daily Life for People
with FMS ......................................................................................................................... 153
Objective Four. An Intervention to Improve Sleep Quality ............................................ 154
Added Value of the Thesis to the Research Literature .................................................... 155
Thesis Limitations and Recommendations for Future Research ..................................... 158
Implications for Practice .................................................................................................. 162
Conclusion ........................................................................................................................... 163
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References ........................................................................................................................... 164
Glossary ............................................................................................................................... 185
Appendices .......................................................................................................................... 186
Appendix A: Search Strategy for Literature Review ....................................................... 186
Appendix B: Information Sheet and Consent Form for Study One (Chapter Four). ....... 187
Appendix C: Letter of Ethical Approval for Study One (Chapter Four) ......................... 189
Appendix D: Participant questionnaire for Study One (Chapter Four) ........................... 191
Appendix E: Published paper of Study One (Chapter Four) ........................................... 200
Appendix F: Information Sheet and Consent Form for Study Two................................. 207
Appendix G: Letter of Ethical Approval for Study Two (Chapter Five) ......................... 209
Appendix H: Participant Questionnaire for Study Two (Chapter Five) .......................... 210
Appendix I. Published Paper for Study Two (Chapter Five) ........................................... 216
Appendix J. Poster Advertising Study Three (Chapter Six) ............................................ 223
Appendix K. Information Sheet and Consent Form for Study Three (Chapter Six) ...... 224
Appendix L: Letter of Ethical Approval for Study Three (Chapter Six) ......................... 228
Appendix M. Letter to GPs for Study Three (Chapter Six) ............................................. 230
Appendix N. Participant Information Sheet and Consent Form for Study Four (Chapter
Seven) .............................................................................................................................. 231
Appendix O: Poster Advertising Study Four (Chapter Seven) ........................................ 234
Appendix P: Letter of Ethical Approval for Study Four (Chapter Seven)....................... 235
Appendix Q: Participant Questionnaire for Study Four (Chapter Seven) ....................... 236
Appendix R. Letter from Dr Mark Cropley Verifying Own Contribution to the Works
Included in this Thesis ..................................................................................................... 242
Appendix S: Curriculum Vitae ........................................................................................ 243

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List of Figures

Figure 1. Tender point sites according to the ACR (1990) diagnostic criteria ............................................. 7
Figure 2. The cycle of sleep stages............................................................................................................. 16
Figure 3. The Integrative Model of the interaction between sleep-interfering and sleep-interpreting
processes (Lundh & Broman, 2000) .......................................................................................................... 20
Figure 4. Conceptual model of the development of sleep difficulties in chronic pain ............................... 34
Figure 5. Conceptual framework of pain and sleep (Call-Schmidt & Richardson, 2003) .......................... 35
Figure 6. The Self-Regulatory Model (Leventhal, Meyer, & Nerenz, 1980; Leventhal, Nerenz, & Steele,
1984) .......................................................................................................................................................... 50
Figure 7. Scree plot for the exploratory factor analysis of the DBAS-10 .................................................. 90
Figure 8. Scree plot for the exploratory factor analysis of the PSS ............................................................ 92
Figure 9. Flow chart of the study population ........................................................................................... 139
Figure 10. Sleep fragmentation index as measured by actigraphy for the two groups ............................. 142
Figure 11. Original Conceptual Framework of Pain and Sleep adapted from Call-Schmidt and Richardson
(2003) ....................................................................................................................................................... 156
Figure 12. Revised Conceptual Framework of Pain and Sleep adapted from Call-Schmidt and Richardson
(2003) ....................................................................................................................................................... 157

v
List of Tables

Table 1. Participant characteristics and assessment measure scores .......................................................... 62
Table 2. Correlations between demographic and health outcome variables ............................................... 68
Table 3. Final model of variables associated with global sleep quality in the logistic regression.............. 70
Table 4. Factor structure of the DBAS-10 for FMS participants ............................................................... 89
Table 5. Factor structure of the PSS-10 for FMS participants ................................................................... 91
Table 6. Participant characteristics and outcome measure scores .............................................................. 94
Table 7. Measures of central tendency and variability for the individual DBAS-10 items ........................ 96
Table 8. Correlations between psychological factors and sleep quality in healthy control participants..... 97
Table 9. Correlations between psychological factors and sleep quality in FMS participants .................... 98
Table 10. Logistic regression analysis ..................................................................................................... 100
Table 11. Interview schedule for the qualitative interviews ..................................................................... 112
Table 12. Participant characteristics ......................................................................................................... 140
Table 13. Measures of central tendency and variability for the actigraphy data ...................................... 141
Table 14. Measures of central tendency and variability for perceptions of sleep quality......................... 143
Table 15. Correlation between subjective and objective measures of sleep quality ................................. 144
Table 16. Measures of central tendency and variability for the measures of health related quality of life
.................................................................................................................................................................. 144

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Attestation of Authorship

“I hereby declare that this submission is my own work and that, to the best of my
knowledge and belief, it contains no material previously published or written by another
person (except where explicitly defined in the acknowledgements), nor material which
to a substantial extent has been submitted for the award of any other degree or diploma
of a university or other institution of higher learning”.

Signature: Date:
vii
Co-authored Works

Although the studies included within this thesis were primarily my own ideas and work,
they would not have been possible without the advice and support of my supervisors
and a number of collaborators.

The first three studies incorporated within this thesis were completed in the UK under
the supervision of Dr Mark Cropley. All three supervisors have provided support with
the data analysis and interpretation of the findings for this thesis.

My contribution to each of the studies forming part of the overarching thesis was as
follows:

For the study described in Chapter Four, I was responsible for developing the research
proposal, project materials and ethics committee application, which were refined
through consultation with one of my supervisors Dr Mark Cropley. I would like to
acknowledge the contribution of Kirsty Humphrey, an MSc student, from the University
of Surrey, UK, who helped me with the participant recruitment, collation of the
questionnaires and data entry for the study described in Chapter Four. I conducted the
data entry checks, cleaning of the data and data analysis. The results were discussed
with my supervisors who contributed to their interpretation and in the publication of the
findings within this thesis and the published paper.

For the two studies which are outlined and discussed in Chapters Five and Six, I was
primarily responsible for the completion of all aspects of the projects including writing
the research proposals, obtaining ethical approval, recruiting participants, completing
the data collection (including conducting all the interviews for the qualitative study) and
data analysis. All aspects of the development of the studies were discussed with my
supervisor Dr Mark Cropley to ensure the study was conducted to be best possible
standard.

For the fourth study, described in Chapter Seven, the project was developed as a joint
collaboration with Dr Mark Cropley. Dr Cropley lead the grant application for funding
from the University of Surrey and I provided input into the design of the study and
refinement of the intervention used to ensure this met the needs of people with FMS. I
viii
was also responsible for preparing the study documentation and facilitating participant
recruitment. On success of the grant application we appointed a part-time research
assistant to provide support with the administration of the project. I would like to
acknowledge the valuable contribution of Joanna Rodriquez, an MSc student, from the
University of Surrey, UK. Joanna‟s role involved providing administrative support, such
as sending out the materials to eligible participants, ensuring follow up data was
received and entering the data into the SPSS database. On completion of the data
collection, I completed the data entry checks and data analysis.

A letter confirming my contribution to the studies incorporated within this thesis from
Dr Mark Cropley is contained in the appendices (see Appendix R).
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