Measuring quality of life in dystonia : an ethnography of contested representations
This thesis examines the experiences of people living with dystonia1 and the ways these are represented by people living with dystonia, the Dystonia Society, neurologists, quality of life (QOL) researchers and pharmaceutical companies. Drawing on ethnographic fieldwork conducted within the Dystonia Society and on projects developing a disease-specific QOL measure, and investigating the impact of dystonia on people’s QOL, the thesis explores a series of questions about the conceptual and practical problems inherent in such measures. It asks: • How dystonia is defined and represented and its impact on people’s lives • Whether people’s experiences of living with dystonia can be adequately mapped by generic or disease-specific QOL measures and how the methodology used in their creation might affect such representations • How QOL measures are used to classify and compare and why it is now deemed necessary to represent people’s experiences in this form The thesis is contextualised within a historical account of the origins of QOL measurement and the social and economic context to its rapid expansion, including the pharmaceutical industry’s use of QOL to bring together diverse groups of actors. I address traditional anthropological questions about measuring and creating universal systems of classification and valuation, but go beyond this to link QOL measurement to the classification and hierarchisation of “audit culture”. I describe how attempts to articulate “the patient’s voice” through measures of QOL can silence the voices of people with limiting conditions and suggest we approach their experiences through narratives that embed their conditions in their lives and give them a meaning that is not wholly negative. I argue that even though the phrase “quality of life” promises an empowering and holistic vision of health, there are two main reasons why QOL measurement cannot fulfil this promise. Firstly, it is primarily a tool for audit, and secondly, new measures reproduce the assumptions of existing measures or clinical models and exclude the elements that people consider most important in maintaining quality of life. Paradoxically, the discourse can reduce people’s QOL when it is used to justify rationing in the UK and redirection of resources internationally. However, despite my criticisms of QOL, I conclude that it has benefited people living with dystonia by creating a discursive space for the discussion of health in non-clinical terms and a language to make claims for resources and the acknowledgement of their experiences. 1A chronic neurological condition involving involuntary muscle spasms in one or more body parts.