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Families' Experiences with Medical Research for Pediatric Rare Diseases

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Families' Experiences with Medical Research for Pediatric Rare Diseases Families’ Experiences with Medical Research for Pediatric Rare Diseases: A Qualitative Ethnographic Study of Parents and Children Participating in Clinical Trials for Duchenne Muscular Dystrophy (DMD) by Christopher J. Condin M.A., The University of British Columbia, 2005 B.A., The University of Victoria, 2002 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in The Faculty of Graduate and Postdoctoral Studies (Anthropology) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) October 2014 © Christopher J. Condin, 2014 Abstract The biopharmaceutical industry has recently expanded its focus on developing new cures for rare diseases. As a growing number of personalised genomic treatments are tested in clinical trials, there is uncertainty about how to account for patient perspectives, and how to measure functional changes reported by patients and caregivers. The illness experiences of patients and families are also being reshaped as they adopt roles as collaborative stakeholders and participants in clinical studies. This dissertation examines these changes using data from qualitative ethnographic research conducted with families of children with Duchenne muscular dystrophy, a progressive and fatal genetic disease diagnosed in boys. Canadian and American families were followed using semi-structured interviews and observational methods as they participated in clinical trials testing a genomic treatment for DMD, called ataluren (formerly known as PTC124). Ethnographic work was also carried out with physicians, patient-advocates, and other professionals engaged in clinical neuromuscular research. The dissertation contributes to scholarly understanding of families’ everyday experiences in the clinical trial, the significance and meaning of investigational treatments from the patient perspective, and the social context in which pharmaceutical development for rare diseases occurs. I show how genetic research is reconfiguring patient communities and altering moral sensibilities about treatment and care, by revealing “lucky mutations” and new axes of biosocial commonality and difference. I explore the paths families take to the clinical trial, and the “stories of waiting” they tell about their experience in it. Finally, I examine how families ii navigate the uncertainty and liminality of their experience as trial subjects. I discuss how the trial unsettles taken-for-granted social roles, constraining clinical relationships and leaving parents to construct the significance of an experimental treatment in the context of limited information. In so doing, parents assemble and tell “narratives of efficacy” while administering study-drug to their children, drawing on their observations and those made by others. Though parents’ narratives are often dismissed as mere anecdote, I suggest they also offer insight for developing more personalised approaches to clinical research and outcome measurement for rare diseases, by restoring focus on the nuance, idiosyncrasy, and context of families’ experiences with investigational treatments. iii Preface This dissertation is original, unpublished, independent work by the author, Christopher J. Condin. This research was approved by the University of British Columbia Behavioural Research Ethics Board (Certificate #H08-01205), and by the Institutional Review Boards of all hospital sites from which participants were recruited. iv Table of Contents Abstract ........................................................................................................................................... ii Preface............................................................................................................................................ iv Table of Contents .............................................................................................................................v List of Abbreviations ................................................................................................................... viii Acknowledgements ..........................................................................................................................x Chapter 1: Introduction .................................................................................................................. 1 1.1 Thematic Overview of the Dissertation and Ethnographic Questions Addressed ...... 3 1.2 A Brief Overview of Duchenne Muscular Dystrophy and Ataluren (PTC124) ......... 7 1.3 The Clinical Trial ...................................................................................................... 15 1.4 Argument, Contribution, and Significance of the Dissertation................................. 22 Chapter 2: Actors, Methods, and Research Design ..................................................................... 29 2.1 Parent Patient-Subjects ............................................................................................. 29 2.2 Patient Advocates...................................................................................................... 32 2.3 Clinicians and Site-Investigators .............................................................................. 34 2.4 Research Co-ordinators ............................................................................................. 37 2.5 Trial Sponsors ........................................................................................................... 39 2.6 Others Involved in Research ..................................................................................... 42 2.7 Data and Field-Sites .................................................................................................. 43 2.8 Ethnography .............................................................................................................. 46 2.9 Semi-Structured Interviews ...................................................................................... 48 v 2.10 Direct Observation and Accompaniment .................................................................. 49 2.11 Multi-Sited Design .................................................................................................... 51 2.12 Recruitment ............................................................................................................... 52 2.13 Ethics and Access ..................................................................................................... 56 2.14 Strategies for Data Analysis...................................................................................... 60 Chapter 3: Study Setting and Context .......................................................................................... 63 3.1 The Duchenne Illness Experience: The Case of Carol Williamson ......................... 64 3.2 Stories of Waiting ..................................................................................................... 71 3.3 Waiting for the Drug: The Case of Garrett Petersen ................................................ 73 3.4 Lost Milestones and the Reversed Teleology of Childhood ..................................... 83 3.5 The Duchenne Community and “Duchenne as Culture” .......................................... 90 3.6 Personalized Medicine and Segmented Patient Communities ................................ 101 3.7 New Contours and “Lucky Mutations”................................................................... 108 Chapter 4: Parents’ Paths to the Clinical Trial........................................................................... 117 4.1 “The Connected Parent” ......................................................................................... 117 4.2 “The Semi-Connected Parent” ................................................................................ 121 4.3 “The Actively Unconnected Parent” ....................................................................... 125 4.4 Discussion ............................................................................................................... 130 4.5 Conclusion .............................................................................................................. 138 Chapter 5: The Clinical Trial Experience I: The Clinical Trial as Extended Liminality ......... 141 5.1 The Beginning ......................................................................................................... 143 5.2 Time ........................................................................................................................ 147 5.3 Living on the Edge .................................................................................................. 153 vi 5.4 A Blackout Period ................................................................................................... 162 5.5 Conclusion .............................................................................................................. 170 Chapter 6: The Clinical Trial Experience II: Narratives of Efficacy ........................................ 173 6.1 The Case of Carol Williamson ................................................................................ 175 6.2 The Case of Maria Pauling ..................................................................................... 181 6.3 The Case of Aaron Murphy .................................................................................... 187 6.4 Discussion: Paying Closer Attention to Parents’ Narratives of Efficacy .............. 198 6.5 Conclusion .............................................................................................................
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