Measuring the Influence of Chronic Diseases on Health-Related Major Life Changing Decisions ...

400 Pages·2013·19.77 MB·English

Measuring the Influence of Chronic Diseases on
Health-Related Major Life Changing Decisions and
Development of a Patient-Based Novel Instrument for
its Measurement
A thesis submitted in accordance with the conditions governing candidature
for the degree of
DOCTOR OF PHILOSOPHY
In the
Cardiff University
Presented by
ZAHEER UDDIN BHATTI
Welsh School of Pharmacy Department of Dermatology and Wound Healing
Cardiff University School of Medicine
Cardiff Cardiff University, Cardiff
Cardiff
UNIVERSITY
PRI FYSGOL
CaeRDY[§>
August 2011
UMI Number: U584540
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Declaration
This work has not previously been accepted in substance for any degree and is not
concurrently submitted in candidature for any degree.
..............
Statement 1
This thesis is being submitted in partial fulfilment of the requirements for the degree of
PhD.
J g> 1 2,0 If
Signed.......................................... Date.....!....................
Statement 2
This thesis is the result of my own independent work/investigation, except where
otherwise stated. Other sources are acknowledged by explicit references.
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I hereby give consent for my thesis, if accepted, to be available for photocopying and for
inter-library loan, and for the title and summary to be made available to outside
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CONTENTS
Acknowledgments II
List of Abbreviations III
Glossary of Terms V
List of Tables VI
List of Figures VIII
Abstract IX
Chapter One: General Introduction 1
Background 2
Review of the literature 4
Chronic diseases and Major Life Changing Decisions 8
Influence of chronic diseases on patients’ lives 8
Rheumatoid Arthritis 10
Cardiovascular Disorders 10
Diabetes 11
Cystic Fibrosis 12
Respiratory Disorders 13
Chronic Kidney Disease 13
Psoriasis 14
Atopic Eczema 15
Acne 16
Vitiligo 16
Hair Loss 17
Other Chronic Debilitating Skin Disorders 17
Conceptualisation of Health-Related Major Life Changing Decisions 18
Life changing decisions and human psychology 18
Disease Long Term Impact 20
Life course, life transitions, life goals, life events and the concept
of health 24
Life events and Illness concept 27
Minor life decisions 30
Major life changing decisions 30
What can be learnt from the available literature? 33
Conclusion 42
Aims and objectives of the study 45
Chapter Two: Study rationale and methodological framework 46
Introduction 47
Study rationale 47
Methodological framework 49
Study population 49
Inclusion criteria 49
Exclusion criteria 49
Ethical considerations 50
Study Design 50
Data collection techniques 53
Postal survey 54
Individual interviews 55
Focus Groups 57
Data processing and analysis 59
Chapter Three: Development of a new instrument for measuring
the impact of chronic diseases on major life changing decisions:
Conceptualisation and item generation 61
Introduction 62
Methods 62
Initial data collection 62
Data processing and analysis 62
Procedure 63
Postal survey 63
Individual interviews 64
Focus groups 64
Sample size and response rate consideration 64
Results 65
Part I. Postal survey 65
Demographic characteristics of the study participants 65
Results 66
MLCDs reported by individual patient groups 71
Rheumatic disorders 71
Cystic Fibrosis 72
Chronic Pulmonary Obstructive Disease 72
Diabetes 73
Cardiovascular disorders 73
Chronic Kidney Disease 74
Part II. Individual interviews 75
Demographic characteristics of the study participants 75
MLCDs influenced by skin disease 76
Part III. Focus group discussions 78
Demographic characteristics of the study participants 78
MLCDs influenced by skin disease 79
Relationships between the patients’ age and their reported MLCDs 79
Comparison of MLCDs for gender 80
Why individual interviews and focus group discussions were conducted
In patients with skin diseases? 82
Factors influencing MLCDs 83
Part IV. Content analysis 86
Patients’ comments in relation to study secondary objectives 153
Part V. Development of a definition fro MLCDs 166
Summary 168
Chapter Four: Item reduction and development of the Major Life
Changing Decisions Profile (MLCDP) 170
Introduction 171
Methods 171
Results 171
General check list for profile development 171
Domain generation 172
Item/Statement generation 174
Item reduction 175
Development of the draft profile 177
Summary 182
Chapter Five: The Validation of the MLCDP: Content Validity 183
Introduction 184
Methods 184
Procedure 184
Phase 1: Quantitative assessment 185
Phase 2: Qualitative assessment 186
Data processing and analysis 186
Results 187
Demographic characteristics of the panel members 187
Panel of judges’ ratings of the MLCDP items (Quantitative assessment) 187
Panel of judges’ disagreement with the four criteria 188
Panel of judges’ suggestions for change 189
Test of agreement: Interclass Correlation Coefficient (ICC) 195
Panel discussion and the resultant improved MLCDP
(Qualitative assessment) 196
Test of agreement: Kappa coefficient 200
Discussion 201
Summary 202
Chapter Six: The Validation of the MLCDP: Factor Analysis 207
Introduction 208
Methods 208
Exploratory factor analysis (EFA) 208
Confirmatory factor analysis (CFA) 209
Procedure 209
Data processing and analysis 209
Results 211
Demographic characteristics of the study participants 211
Factor Analysis I 214
Reliability of the MLCDP 214
Exploratory factor analysis 214
Further examination 223
Scale refinement 232
Factor Analysis II 232
The examination of prevalence of items 236
The conflict between the patients’ perception and scientific scrutiny 239
Synthesis of the factor analysis findings 241
Final structure of the MLCDP 252
Face validity and practicality 258
Discussion 260
Specific recommendations for further factor analysis 261
Uses of MLCD Profile (version 2) and response interpretation 261
Summary 263
Chapter Seven: General Discussion 266
Strategies for appropriate decision taking 280
Study implications 285
Study limitations 286
Future work 287
Patients’ views about the study 290
Conclusion 291
References 294
Publications, presentations and online coverage 316
Appendices 341
DEDICATION
To my father Abdul Ghaffar, mother Shareefan Khatoon and to my six Big Brothers
I
ACKNOWLEDGMENTS
I am thankful to Allah for his blessings and for giving me this opportunity to meet and
work with truly wonderful people of Cardiff University and Cardiff and Vale
University Hospital Health Board.
I am heartily thankful to my excellent, friendly yet highly professional supervisors
Professor Sam Salek and Professor Andrew Finlay for their constant encouragement,
guidance, support and sharing their vast academic experience from the beginning of
this project to the final stages, enabled me to develop appropriate academic skills and
understanding of the subject. Thank you very much Professor Salek and Professor
Finlay.
I wish to express my sincere gratitude to Professor Julian Halcox (Welsh Heart
Research Institute, Cardiff University), Dr Linsay George (Department of Diabetes
and Endocrinology, University Hospital Llandough, Cardiff), Dr Ian Ketchell (Adult
Cystic Fibrosis Services, University Hospital Llandough, Cardiff), Dr Sharon Jones
(Department of Rheumatology, Cardiff and Vale University Health Board, Cardiff),
Dr Charlotte Bolton and Dr Ramsey Sabit (Department of Respiratory Medicine,
University Hospital Llandough, Cardiff) and Dr Richard Moore (Department of
Nephrology and Transplantation, Cardiff and Vale University Health Board, Cardiff)
for actively taking part in this project, for their advice and support.
I would like to thank Professor Vincent Piguet (Head of the Dermatology Department,
Cardiff and Vale University Health Board, Cardiff) and Dr Maria Gonzalez (Reader
in Dermatology and Director of Postgraduate Dermatology Courses) for their support.
I am grateful for the help of all patients of Cardiff and Vale UHHB and University
Hospital Llandough who took time to take part in this study and shared their moving
and extraordinary life experiences. Many thanks also to Dr N Massani (Welsh Heart
Research Institute, Cardiff University), Dr Steven Riley and Sister Jean Jenkins
(Department of Nephrology and Transplantation, Cardiff and Vale University Health
Board, Cardiff), Sister Glenys Morgan (Rheumatology), Sister Jayne Blumberg
(Diabetes Centre), Ms Helen Harron (School of Pharmacy), Ms Erica Swain (Arts and
Social Sciences Library), Mr Paul McGeoghan (Inserve Connect), Sister Linda
Edmunds (Cardiology), Sister Carol Davis (Adult Cystic Fibrosis Services), Dr M
Chowdhury, Sister Ann Thomas, Dr Basra, Ms Susan Williams, Ms Joy Hayes
(Dermatology) for their help in this project.
All my gratitude to my parents, to my brothers for their love, support, blessings and
prayers for my success.
Finally, special thanks to my brother and friend Fayyaz Uddin.
II
LIST OF ABBREVIATIONS
ADDQoL Audit of Diabetes-Dependent Quality of Life
ADS Appraisal of Diabetes Scale
AF Atrial Fibrillation
AS Aortic Stenosis
BSV Between-subject variation
CAD Coronary Artery Disease
CDLQI Childrens Dermatology Life Quality Index
CESD Centre for Epidemiologic Studies Depression
CFA Confirmatory Factor Analysis
Cl Confidence Interval
CKD Chronic Kidney Disease
CLCI Cumulative Life Course Impairment
CoL Course of Life
COPD Chronic Obstructive Pulmonary Disease
CF Cystic Fibrosis
DDEB Dominant Dystrophic EB
DFI Dermatitis Family Impact
DLQI Dermatology Life Quality Index
DQOL Diabetes Quality of Life Measure
DQLCTQ-R Quality of Life Clinical Trial Questionnaire-Revised
DSQOLS Diabetes Specific Quality of Life Scale
DU Discounted Utility
EB Epidermolysis Bullosa
EEG Electroencephalography
EFA Exploratory Factor Analysis
EPP Expert Patent Programme
FACT-G Functional Aspect of Cancer Therapy - General
FCO Foreign and Commonwealth Office
FG Focus Group
fMRI Functional Magnetic Resonance Tomography
GCSE General Certificate of Secondary Education
GP General Practitioner
HIV Human Immunodeficiency Virus
HRQoL Health-Related Quality of Life
HRMLCDs Health-Related Major Life Changing Decisions
HV Hydroa Vacciniforme
ICC Interclass Correlation Coefficient
ICF International Classification of Functioning, Disability
and Health
ICF-CY Children and Youth version of the International
Classification of Functioning, Disability and Health
ICIDH International Classification of Impairment, Disability
and Handicap
IPSO Impacts of Psoriasis Questionnaire
IVF In Vitro Fertilization
JEB Junctional Epidermolysis Bullosa
JSTOR Journal Storage
KMO Kaiser-Meyer-Olkin
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