title: Measuring Quality of Life in Dystonia: An Ethnography of Contested Representations
Creators: name: Camfield, Laura Emma Lilian
Publisher: name: Goldsmiths, University of London
Year: 2002

description: Chapter 1: Introduction Describes my personal engagement with QOL measurement and disability. Situates research in a theoretical context by reviewing literature on the anthropologies of disability, audit, medicine, the body, and science and technology. Introduces dystonia and my field sites and briefly describes healthcare provision in the UK (including the role of the National Institute of Clinical Evidence). Section 1: Experiences of people living with dystonia Chapter 2 Living with dystonia Briefly reviews anthropological and sociological literature on living with a chronic illness, before focusing on the themes that characterise the experience of dystonia (understanding and representing changes in the body, obtaining a diagnosis and maintaining relations of trust with doctors, communicating dystonia to others, responding to dystonia, and external responses to dystonia). Chapter 3 Stories from people living with dystonia Explores the themes identified in chapter 2, using six stories to give a sense of how dystonia 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 the 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 the Dystonia Society Examines the Dystonia Society (the main patient support organisation for people living with dystonia), which is an influential actor in the networks explored in chapter 6. Describes its history, culture, and relationship with members, and looks at how it constructs "the voice of people living with dystonia" in fundraising and media campaigns. Chapter 6 "Partnerships for progress"? Explores the relationships between pharmaceutical companies, patient support organisations, doctors, and the government, and their mediation through QOL, using ethnography from national and international meetings of neurologists, neurological patient 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 the context of submissions to the National Institute of Clinical Excellence. Section 3: Quality of life Chapter 7 Defining and measuring QOL Examines how the discipline of QOL research has expanded and professionalised, and constructs a "genealogy" of QOL to explore the links between its psychometric ancestry and the expansion of statistics and eugenics in the nineteenth century. Looks at the implications of definitions of QOL and assumptions underlying different measures. Explores how they are used in the health economic analyses that are increasingly guiding resource allocation in the UK and addresses the ethical and methodological problems of asking "healthy" people and health professionals to value the 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 the QOL of people living with dystonia. Chapter 9 Realising the potential of QOL: The World Health Organisation Uses the example of the WHO to demonstrate the 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 the Global Burden of Disease Project, which uses health economic analyses to set international priorities for health spending using the Disability Adjusted Life Year. Conclusion Addresses key questions explored in the thesis, specifically how the rhetorics of QOL and the "voice of the patient" are used as resources in the struggles of doctors, patient support organisations, and pharmaceuticals; how QOL measures can represent "invisible" conditions like dystonia and make them visible and accountable; whether QOL measurement is an example of medicalisation and/or the extension of audit culture into health, and, finally, whether the voices of patients are currently being heard and what can be done to facilitate this.