Measuring quality of life in dystonia : an ethnography of contested representations

Abstract

Chapter 1: Introduction Describes my personal engagement with QOL measurement and disability. Situates research in a theoretical context by reviewing literature on anthropologies of disability, audit, medicine, body, and science and technology. Introduces and my field sites and briefly describes healthcare provision in UK (including role of National Institute of Clinical Evidence). Section 1: Experiences of people living with Chapter 2 Living with Briefly reviews anthropological and sociological literature on living with a chronic illness, before focusing on themes that characterise experience of (understanding and representing changes in body, obtaining a diagnosis and maintaining relations of trust with doctors, communicating to others, responding to dystonia, and external responses to dystonia). Chapter 3 Stories from people living with Explores themes identified in chapter 2, using six stories to give a sense of how is integrated into people's lives. Looks at how people use narrative to make sense of illness and give it personal meaning and explores methodological problems with using narrative. Section 2: Encounters with bureaucracy Chapter 4 Encounters with medicine: Derek's story Examines individual encounters with medical bureaucracy through story of Derek, an intelligent and articulate man with generalised dystonia. His story is contextualised by other interviews and accounts from people living with dystonia, and sociological and anthropological literature on doctor-patient relations. Chapter 5 Professional or bureaucratic?: The dilemma of Dystonia Society Examines Dystonia Society (the main support organisation for people living with dystonia), which is an influential actor in networks explored in chapter 6. Describes its history, culture, and relationship with members, and looks at how it constructs the of people living with dystonia in fundraising and media campaigns. Chapter 6 Partnerships for progress? Explores relationships between pharmaceutical companies, support organisations, doctors, and government, and their mediation through QOL, using ethnography from national and international meetings of neurologists, neurological support organisations, and QOL researchers. Treats QOL (and its related discourse on the patients' voice) as a boundary object around which diverse alliances can form and explores these further in context of submissions to National Institute of Clinical Excellence. Section 3: Quality of life Chapter 7 Defining and measuring QOL Examines how discipline of QOL research has expanded and professionalised, and constructs a genealogy of QOL to explore links between its psychometric ancestry and expansion of statistics and eugenics in nineteenth century. Looks at implications of definitions of QOL and assumptions underlying different measures. Explores how they are used in health economic analyses that are increasingly guiding resource allocation in UK and addresses ethical and methodological problems of asking healthy people and health professionals to value lives of people with disabilities. Chapter 8 An ethnography of QOL measurement Describes how measures of QOL are created and used, using ethnography from fieldwork on a multiple sclerosis-specific QOL measure and a European survey of QOL of people living with dystonia. Chapter 9 Realising potential of QOL: The World Health Organisation Uses example of WHO to demonstrate double-edged nature ofQOL by examining three projects: a multilingual, multidimensional QOL measure to be used internationally with healthy'' and sick populations; a universal classification of health (the International Classification of Functioning, Disability and Health); and Global Burden of Disease Project, which uses health economic analyses to set international priorities for health spending using Disability Adjusted Life Year. Conclusion Addresses key questions explored in thesis, specifically how rhetorics of QOL and voice of patient are used as resources in struggles of doctors, support organisations, and pharmaceuticals; how QOL measures can represent invisible conditions like and make them visible and accountable; whether QOL measurement is an example of medicalisation and/or extension of audit culture into health, and, finally, whether voices of patients are currently being heard and what can be done to facilitate this.