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Conference: Leah McClimans at McGill


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Résumé | Abstract

Since the 1970s epidemiological measures focusing on “quality of life” have figured increasingly as endpoints in clinical trials. In this talk I begin by examining the history of these measures, which were later relabeled “patient-reported outcome measures” or PROMs. The ability of these measures to faithfully report patient concerns and/or quality of life has been contested for much of their history. I will argue that this ethical concern is linked to epistemic concerns about the validity, interpretability and responsiveness of these measures. I will suggest that researchers cannot put the ethical question to one side and move forward with the methodological and epistemic ones.