Measurement and meaning in health-related quality of life research.

In this thesis I take up the topic of our understanding of questions in a detailed case study of non-utility measures of health-related quality of life. I argue that efforts to standardize these measures lead to limitations in our ability to understand and measure quality of life. In the first half of this thesis I describe two types of bias that affect quality of life measures despite efforts to validate them. On the one hand, quality of life measures can perpetuate ethnocentric understandings of quality of life. On the other hand, respondents often understand the questions in these measures very differently than researchers imagined. I argue that the residual bias found in quality of life measures is the result of two assumptions built into the use of construct validity: 1) when a measure's outcomes confirm our hypotheses, we are warranted in having greater confidence in the accuracy of our theory 2) respondents understand the questions and answers in our measures in the same way as researchers imagined they would. In the second half of this thesis I argue that the limitations of construct validity stem from the logic of asking questions, a logic which precludes standardization. I propose that quality of life measures ought to be understood differently-they are not independent instruments capable of unambiguous claims, but rather one element in a dialogic framework whose questions and outcomes serve as the starting point for further inquiry. Finally, I examine what might have motivated the misguided use of construct validity. I suggest that the motivation lies in an erroneous picture of the human subject. I argue for an alternative picture that allows me to introduce an ethical dimension to our questions about quality of life