self-administered cognitive behavioural therapy for women with chronic pelvic pain

281 Pages·2017·2.93 MB·English

by  Arthur Stabolidis

SELF-ADMINISTERED COGNITIVE
BEHAVIOURAL THERAPY FOR WOMEN
WITH CHRONIC PELVIC PAIN: DESIGN AND
PILOT EVALUATION

Arthur David Stabolidis

This thesis was submitted in partial fulfilment of the requirements for
Doctor of Philosophy/Master of Psychology
School of Psychological Sciences

The University of Melbourne
ii
Abstract
Chronic pain is a complex, costly, and distressing condition that is associated with
depression, anxiety, and functional impairment. Affecting approximately one in five
women, chronic pelvic pain (CPP) can be particularly debilitating and is the most
common cause of referral to women's health services. Medical interventions for this
condition are generally limited to short-term symptom relief, while psychological
interventions, although effective, are often not utilised or available. Stigma, mobility,
cost, and lack of resources are among the barriers women face when considering
psychological interventions for CPP.
These barriers are common among many chronic pain and mental health conditions, for
which technology-based interventions are sometimes utilised. Some of these
interventions, such as self-administered cognitive behavioural therapy (CBT) have
shown to be as effective as face-to-face therapies. The almost ubiquitous adoption of
mobile smartphones provides opportunities to deliver self-administered CBT to a wider
range of people, and at relatively low cost. Unfortunately, there are no technology-based
psychological interventions currently available for women experiencing CPP.
The aim of the research reported in this thesis was to develop and pilot-test a
technology-based CBT intervention for women experiencing CPP utilising a co-design
approach. In the first phase of this project, outpatients and clinicians from the CPP
Clinic of the Royal Women’s Hospital in Melbourne (Australia) took part in a series of
focus groups and interviews. This provided a rich understanding of the condition and
helped determine the suitability of a technology-based CBT intervention for women
with CPP. The data from this phase were then used to create a set of design
specifications which informed the development of a smartphone app, appEase.
The smart-phone intervention delivered a 28-day CBT intervention involving
mindfulness relaxation, cognitive restructuring, and pain education which women
experiencing CPP would use daily. The final phase of the project involved pilot-testing
appEase. Twenty-four women completed a series of baseline measures and took part in
a screening interview. Of these women, eighteen completed post-intervention measures,
and participated in mid- and post-intervention interviews. Survey and usage data were
also collected from within the app while participants were engaging with the therapy.
iii
Two women underwent surgery during the pilot study, and of the sixteen women who
met the full criteria for data inclusion, twelve (75%) completed all 28 sessions.
Although the app was designed to be used over 28 days, the mean completion time was
64 days. Most women found it difficult to find 15 minutes every day to utilise the app.
Nevertheless, ten participants (63%) experienced clinically significant reductions in
Pain Catastrophising, and nine (56%) experienced clinically significant increases in
Pain Self-Efficacy.
The co-design methodologies utilised produced some useful insights into how women
engaged with the therapy, and what mechanisms may have led to favourable outcomes.
Interviews with participants during and after the pilot study confirmed that appEase was
engaging, simple to use, and provided helpful tools and strategies for managing CPP.
Furthermore, some participants reported that they felt a therapeutic relationship between
themselves and the intervention. These results suggest that a self-administered
technology-based CBT intervention may be suitable for women experiencing CPP and
could play a role in helping them manage their pain.
This project is the first to apply co-design methodologies to the treatment of CPP in
women. Furthermore, the app created, appEase, is the first technology-based CBT
intervention developed for this population. Using co-design methodologies also yielded
some rich insights into the personal experiences and complexities of CPP in women. It
provided some helpful information into how intervention could be evaluated and has
produced a sound empirical basis for testing the efficacy of appEase in a randomised
control trial.
iv
Declaration
I, Arthur Stabolidis, declare that this thesis is my own work, except where
acknowledged, and that the research reported in this thesis was conducted in accordance
with the principles for the ethical treatment of human subjects as stated by the
University of Melbourne Human Research Ethics Committee and the Royal Women’s
Hospital Human Research Ethics Committee. This thesis is less than 100,000 words in
length, exclusive of tables, figures, references, and appendices, and has not been
previously accepted in any substance for any other degree.

Signed: Date: January 26, 2018
v
Acknowledgements
I would like to thank my supervisors for their guidance and patience throughout this
project. Their expertise and temperament were both motivating and inspiring. I would
also like to thank the Collier Charitable Fund for providing the financial support for the
research program, the clinical and administrative staff of the Royal Women’s hospital
for their help and perseverance, and Associate Professor Martin Healey and Professor
Stephen Bowden for initiating discussions about this project. I would also like to thank
the patients from the hospital for their generous insights, and all the study participants
for their enthusiastic contributions. Finally, I thank my wife and Tonie Thiele for their
enduring encouragement and support, and for making this endeavour possible.

Ask not what disease the patient has, but rather who the patient is that has the disease.
William Osler
vi
Table of Contents
Chapter 1. Introduction ___________________________________________________ 1
Summary of the Project ______________________________________________ 4
Outline of This Thesis _______________________________________________ 4
Chapter 2. Chronic Pain __________________________________________________ 7
2.1 Definition, Classification and Prevalence __________________________ 7
Pain and Nociception __________________________________________________________ 7
Chronic Pain ___________________________________________________________________ 7
Classifications _________________________________________________________________ 8
2.2 Prevalence and Impact _________________________________________ 9
Prevalence _____________________________________________________________________ 9
Economic Cost ________________________________________________________________ 9
Physical Health _______________________________________________________________ 10
Social Impact _________________________________________________________________ 10
Psychological Cost ____________________________________________________________ 11
2.3 Theories and Perspectives on Chronic Pain _______________________ 11
Psychodynamic and Early Theories of Pain ____________________________________ 12
Gate Control Theory __________________________________________________________ 12
Neuromatrix Theory __________________________________________________________ 13
Sensitised Pain System ________________________________________________________ 13
Neuroplasticity and Cortical Restructuring _____________________________________ 14
2.4 Risk and Moderating Factors __________________________________ 14
The biopsychosocial perspective_______________________________________________ 15
Anxiety, Fear and The Fear-Avoidance Model _________________________________ 15
Pain Catastrophising (PC) _____________________________________________________ 16
Pain Self-efficacy (PSE) ______________________________________________________ 18
Social and Cultural Factors ____________________________________________________ 19
Lifestyle and Social Factors ___________________________________________________ 19

2.5 Cognitive Behavioural Approaches to Chronic Pain Management ____ 20
Cognitive Behavioural Therapy (CBT) ________________________________________ 21
Mindfulness __________________________________________________________________ 21
Acceptance and Commitment Therapy _________________________________________ 22
vii
2.6 Multi-disciplinary Approaches _________________________________ 23
2.7 Conclusion __________________________________________________ 23
Chapter 3. Chronic Pelvic Pain in Women ___________________________________ 25
3.1 Definition and Prevalence _____________________________________ 25
Chronic Pelvic Pain ___________________________________________________________ 25
Prevalence ____________________________________________________________________ 25
3.2 Conditions Associated with Pelvic Pain in Women _________________ 26
Endometriosis ________________________________________________________________ 26
Adenomyosis _________________________________________________________________ 27
Adhesions, Congestion and Inflammation ______________________________________ 27
Gastrointestinal, Musculoskeletal and Neurological Factors ____________________ 28
Dyspareunia and Vaginismus __________________________________________________ 28
Pelvic Pain with no Satisfactory Explanation ___________________________________ 29
3.3 Common Interventions _______________________________________ 30
Pharmacological Interventions ________________________________________________ 30
Interventions Involving Nerves and Spinal Cord _______________________________ 30
Physical Therapy _____________________________________________________________ 31
3.4 Risk and Moderating Factors __________________________________ 31
Abuse, Trauma and PTSD _____________________________________________________ 32
Psychological Morbidity ______________________________________________________ 33
Personality Disorders and Types _______________________________________________ 34
3.5 Utilising CBT as a treatment for Chronic Pelvic Pain in Women _____ 35
Defining CBT for Chronic Pain _______________________________________________ 35
The Evidence Base____________________________________________________________ 35
CBT for Chronic Pain _________________________________________________________ 39
3.6 Challenges in Delivering CBT to Women with Chronic Pelvic Pain ___ 43
Mobility, Convenience and Cost _______________________________________________ 44
Availability of Clinicians and Resources _______________________________________ 44
Stigma _______________________________________________________________________ 45
Suitability and Perceived Locus of Control _____________________________________ 45
Readiness to Change __________________________________________________________ 45
Importance of Therapeutic Relationship _______________________________________ 46
3.7 Conclusion __________________________________________________ 47
viii
Chapter 4. Self-Administered CBT for Chronic Pelvic Pain: Challenges and Co-Design
Methodologies ________________________________________________________ 49
4.1 Delivering CBT outside Face-to-Face Contexts ____________________ 49
Category 1: Predominately Therapist-Driven interventions _____________________ 50
Category 2: Predominately Client-Driven interventions _________________________ 51
Category 3: Self-Administered interventions ___________________________________ 52
Studies Comparing Different Degrees of Therapist Involvement ________________ 53
4.2 Utilising Mobile Phone Technology for the Management of Pain _____ 53
Advantages ___________________________________________________________________ 53
Evidence Base ________________________________________________________________ 55
4.3 Considerations and Challenges _________________________________ 57
Attrition ______________________________________________________________________ 57
Safety ________________________________________________________________________ 59
Literacy ______________________________________________________________________ 59
Collaborative Goals and Therapeutic Relationship _____________________________ 59
4.4 Co-design of Technology-based Interventions _____________________ 59
Guidelines and Procedures ____________________________________________________ 60
Methods Utilised in Co-design ________________________________________________ 61
Co-design and Therapeutic Alliance ___________________________________________ 63
4.5 Conclusion __________________________________________________ 65
Chapter 5. ____________________________________________________________ 67
Aim, Rationale and Research Questions ____________________________________ 67
5.1 Rationale ___________________________________________________ 67
5.2 Outline of the Study __________________________________________ 69
5.3 Reflexivity Statement _________________________________________ 71
Chapter 6. Phase 1: Investigating Self-administered CBT for Women Experiencing
Chronic Pelvic Pain ____________________________________________________ 73
6.1 Method: Stage 1 Focus Groups with Patients _____________________ 73
Sample _______________________________________________________________________ 73
Recruitment __________________________________________________________________ 74
Procedure for Data Collection _________________________________________________ 74
Instruments Stage 1: Focus Groups with Patients _______________________________ 74
Data Analysis Stage 1 _________________________________________________________ 77
ix
6.2 Results: Stage 1 Focus group with Patients _______________________ 78
Experience of Pain ____________________________________________________________ 78
Views about Psychological Factors ____________________________________________ 80
Views about Technology ______________________________________________________ 82
6.3 Methods of Investigation Stage 2: Clinicians ______________________ 85
Sample _______________________________________________________________________ 85
Recruitment __________________________________________________________________ 86
Procedure for Data Collection _________________________________________________ 86
Instruments Stage 2: Focus Groups and Interviews with Clinicians ______________ 86
Data Analysis _________________________________________________________________ 88
6.4 Results Stage 2: Focus Groups and Interviews with Clinicians _______ 89
6.5 Discussion __________________________________________________ 92
Research Questions ___________________________________________________________ 92
Ethical Considerations ________________________________________________________ 95
Strengths and Limitations _____________________________________________________ 96
Conclusion ___________________________________________________________________ 97
Chapter 7. Phase 2: Intervention Design and Development ______________________ 98
7.1 Design Principles and Therapy Goals ____________________________ 98
Clear Goals and Achievable Skills _____________________________________________ 98
Cultivating Awareness ________________________________________________________ 99
Careful Use of Language and Emotional Validation ____________________________ 99
Welcoming and Safe Environment ____________________________________________ 100
Ease of Use __________________________________________________________________ 100
Acceptance and Self-Compassion ____________________________________________ 100
Application of Skills Learned ________________________________________________ 101
7.2 Features of the Intervention __________________________________ 101
Three-Part Sessions __________________________________________________________ 101
Limiting Sessions to One per Day ____________________________________________ 102
Audio-Only Delivered Therapy _______________________________________________ 103
Relief for Acute Pain Flares __________________________________________________ 104
Safe Space Option ___________________________________________________________ 104
Data Collection Capabilities __________________________________________________ 104
Post-therapy Toolkit _________________________________________________________ 104
7.3 Topics Covered _____________________________________________ 105
Relaxation and Mindfulness Training _________________________________________ 105
x
Pain Fear and Pain Visualisation______________________________________________ 107
Motivation and Values _______________________________________________________ 107
Cognitive Restructuring, Sleep and Worry ____________________________________ 108
Accommodating Feelings and Emotions ______________________________________ 109
Self-Compassion _____________________________________________________________ 109
Communicating Intimacy ____________________________________________________ 109
Social Anxiety, Secondary Gains and Relapse Prevention _____________________ 109
Supplementary Sessions ______________________________________________________ 110
7.4 Creating the App ___________________________________________ 110
Creating Scripts for Narration ________________________________________________ 110
Narrating the Scripts _________________________________________________________ 111
Choosing Appropriate Sounds and Music _____________________________________ 111
Producing the Audio Sessions ________________________________________________ 111
User Interface Considerations ________________________________________________ 112
The Admin Panel ____________________________________________________________ 112
Collecting Usage and Survey Data from Users ________________________________ 113
Trouble Shooting and Testing ________________________________________________ 113
Budget Constraints ___________________________________________________________ 113
appEase _____________________________________________________________________ 114
7.5 Technical Considerations _____________________________________ 115
Collecting Usage and Survey Data from Users ________________________________ 115
Budget Constraints ___________________________________________________________ 115
Trouble Shooting and Testing ________________________________________________ 115
7.6 Development Summary ______________________________________ 116
Chapter 8. Phase 3: Pilot Study __________________________________________ 117
8.1 Method ____________________________________________________ 117
Sample ______________________________________________________________________ 117
Ethical Considerations _______________________________________________________ 119
Procedure for Data Collection ________________________________________________ 120
Instruments __________________________________________________________________ 121
8.2 Data Analysis ______________________________________________ 130
Primary Measures ____________________________________________________________ 130
Secondary Measures _________________________________________________________ 130
App Survey Data ____________________________________________________________ 131
Coding of Screening Interviews ______________________________________________ 131