Natalie Joseph-Williams
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‘Nobody knows me better than me’ The development and pilot-testing of a patient-targeted complex intervention to prepare patients to participate in shared decision-making Natalie Joseph-Williams Thesis submitted for the degree of Doctor of Philosophy Cardiff University October 2015 Supervisors Professor Adrian Edwards & Professor Glyn Elwyn 1 Declarations This work has not been submitted in substance for any other degree or award at this or any other university or place of learning, nor is being submitted concurrently in candidature for any degree or other award. Signed ………………………………… (candidate) Date ……………………… STATEMENT 1 This thesis is being submitted in partial fulfilment of the requirements for the degree of PhD. Signed …………………………………. (candidate) 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. The views expressed are my own. Signed ………………………………….. (candidate) Date ……………………… STATEMENT 3 I hereby give consent for my thesis, if accepted, to be available online in the University’s Open Access repository and for inter-library loan, and for the title and summary to be made available to outside organisations. Signed …………………………………. (candidate) Date ……………………… i Summary of Thesis Clinicians are ‘medical knowledge experts’ who can use their training, their experience, and evidence based medicine to diagnose and determine healthcare options available to patients, but patients are ‘personal preference experts’. Shared decision-making (SDM) depends on the combination of the different clinician and patient expertise, but to date efforts to increase SDM have largely not addressed how to enable patients to contribute their expertise to the process. The work in this thesis describes the development and pilot- testing of a theory-based intervention, which aims to prepare patients to participate in SDM. Development and pilot-testing was guided by the MRC’s framework for developing complex interventions. A systematic review revealed patient-reported barriers and facilitators to participating in SDM (key barriers included knowledge and perceived power imbalance) and a literature review found that existing interventions do not sufficiently address patient-reported barriers; thus there was scope to develop on more comprehensive theory-based intervention. The Behaviour Change Wheel guide was used to develop a theory-based intervention: an 8- page booklet entitled ‘Your Health, Your Choice’. Pre-testing with lay users, clinicians and organisational representatives revealed positive responses to the booklet’s key messages and design. Preliminary pilot-testing in a breast care setting showed evidence of high reach, dose and usage, and potential for the intervention to change patients attitudes towards the patient role in consultations (i.e. should patients be involved in SDM). However, the booklet had less impact on patients’ perceptions of whether clinicians want patients to become more involved (i.e. would patients be able to become involved.) Overall, preliminary findings suggest that the intervention could be a useful tool for preparing patients for SDM and for changing patients’ attitudes towards patient involvement. However, preparation for SDM must be followed by enablement by willing and skilled clinicians, and delivered within a supportive organisation. ii Acknowledgements I will be eternally grateful to my supervisors, Professor Adrian Edwards and Professor Glyn Elwyn, for their encouragement to undertake this thesis as a member of staff. Their mentorship and support since I joined their team in 2007 as a novice researcher has been invaluable. The independence they afforded me meant that I could undertake a thesis in a topic that I am passionate about, improving care for patients, and I thank them for this. I would like to thank colleagues at the Institute of Primary Care and Public Health, Cardiff University, who have shown their support in various ways over the last four years of my thesis. I am grateful to Mala Mann (Specialist Unit for Review Evidence) for her support in developing the systematic review search strategies. I am extremely grateful for the support of the Cardiff and Vale University Health Board Breast Care Centre, including Helen McGarrigle. Without the support from Helen and the team, this work would not have been possible. I would also like to thank the patients, members of the public, clinicians and organisational representatives who gave their time to take part in the interviews. Finally, I dedicate this thesis to my family and friends. You would support me no matter what I choose to do in life, but it is this unconditional support that always drives me to achieve the best that I can, and to make you proud. For close friends who have no interest in my thesis, but who always keep me going – thanks for sharing the tequila and gin! Ben and Jake; thank you for reminding me that there are one hundred reasons to smile every day, regardless of how my PhD work was going. iii Contents Summary of Thesis ii Acknowledgements iii Contents iv List of Tables x List of Figures xi Abbreviations xii Chapter 1 1 ‘Nobody knows me better than me’: Introduction and thesis overview 1 1.1 From ‘doctor knows best’, to ‘nobody knows me better than me’ 2 1.2 Supporting patients to participate in SDM – the implementation context 4 1.3 Implementation of SDM: have we forgotten that it takes ‘two to tango’? 7 1.4 Developing and evaluating theory-based complex interventions 11 1.5 Thesis aims and objectives 12 1.6 Thesis overview 12 Chapter 2 2 Patient-reported barriers and facilitators to SDM: a systematic review and 15 thematic synthesis 2.1 Introduction 16 2.2 Methods 18 2.2.1 Search strategies 18 2.2.2 Selection criteria 19 2.2.3 Study identification and data extraction 20 2.3 Results 22 2.3.1 Included studies 22 2.3.2 Study characteristics 22 2.3.3 Barriers and facilitators – main themes 33 iv 2.4 Discussion 53 2.4.1 Implications 58 2.4.2 Strengths and weaknesses 59 2.4.3 Conclusion 60 Chapter 3 3 A review and critical evaluation of patient-targeted interventions designed to 62 prepare patients for SDM: do they address patient reported barriers and facilitators? 3.1 Introduction 62 3.2 Methods 64 3.2.1 Search strategies 64 3.2.2 Selection criteria 65 3.2.3 Intervention identification and data extraction 67 3.2.4 Intervention evaluation 67 3.3 Results 68 3.3.1 Included interventions 68 3.3.2 Intervention and study characteristics 71 3.3.3 Intervention evaluation 85 3.4 Discussion 99 3.4.1 Strengths and weaknesses 104 3.4.2 Conclusion 105 Chapter 4 4 Using the Behaviour Change Wheel Guide to develop a patient-targeted 107 intervention designed to prepare patients for SDM 4.1 Introduction 107 4.1.1 Developing a theory-informed intervention: he Behaviour Change Wheel 108 Guide 4.2 Methods 113 4.2.1 Step 1: Identifying the problem- what behaviour are you trying to change, 115 and in what way? v 4.2.2 Step 2: Assessing the problem – what barriers and facilitators are to be 115 addressed? 4.2.3 Step 3: Forming possible solutions – which intervention components could 116 overcome modifiable barriers and enhance the facilitators? 4.2.4 Step 4: Deciding on the specific intervention components – using the 118 Behaviour Change Techniques Taxonomy 4.3 Results 119 4.3.1 Step 1: Identifying the problem- what behaviour are you trying to change, 119 and in what way? 4.3.2 Step 2: Assessing the problem – what barriers and facilitators are to be 120 addressed? 4.3.3 Step 3: Forming possible solutions – which intervention components could 121 overcome modifiable barriers and enhance the facilitators? 4.3.4 Step 4: Deciding on the specific intervention components – using the 133 Behaviour Change Techniques Taxonomy 4.4 Discussion 140 Chapter 5 5 Pre-testing the prototype ‘Your Health, Your Choice’ intervention with users 145 and clinicians: a qualitative study 5.1 Introduction 145 5.2 Methods 146 5.2.1 User group – recruitment and analysis 146 5.2.2 Clinicians – recruitment and analysis 148 5.3 Results 149 5.3.1 Sample 149 5.3.2 Patient sample – framework analysis using the TDF 150 5.3.3 Clinician sample – key themes emerging from the thematic analysis 160 5.3.4 ‘How this is given out is key’ – implementation of the intervention 164 5.3.5 Design, format and content changes 169 5.3.6 The pilot-testing version of ‘Your Health, Your Choice’ 173 5.4 Discussion 173 5.4.1 Strengths and weaknesses 177 vi 5.4.2 Conclusion 178 Chapter 6 6 Pilot-testing the ‘Your Health, Your Choice’ booklet: a process evaluation 179 6.1 Introduction 179 6.2 Methods 182 6.2.1 Clinical team and sample recruitment 182 6.2.2 Assessing mechanisms of impact – does the intervention produce change, 186 and how does it achieve this? (Objective 1) 6.2.3 Assessing implementation, context and design issues (Objectives 2 & 3) 190 6.2.4 Analysis 190 6.3 Results 191 6.3.1 Sample 191 6.3.2 Mechanisms of impact – does the intervention produce change, and how 192 does it achieve this? 6.3.3 Contextual factors 198 6.3.4 Implementation and use of the intervention 202 6.3.5 Design and format feedback 205 6.4 Discussion 207 6.4.1 Strengths and weaknesses 211 6.4.2 Conclusion 213 Chapter 7 7 Further research plans 214 7.1 Integrated taxonomy of patient-reported barriers and facilitators, and cultural 214 adaptation 7.2 Further development and testing of the ‘Your Health, Your Choice’ intervention 215 7.3 Evaluation proposal – cluster randomised controlled trial and process