First person epidemiological measures: vehicles for patient centered care
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Since the 1970’s epidemiological measures focusing on “health-related quality of life” or simply “quality of life” have figured increasingly as endpoints in clinical trials. Before the 1970’s these measures were known, generically, as performance measures or health status measures. Relabeled as “quality of life measures” they were first used in cancer trials. In the early 2000’s they were relabeled again as “patient-reported outcome measures” or PROMs, in their service to the FDA to support drug labeling claims. To the limited degree that the philosophical literature addresses these measures, it tends to associate them with two major theories of well-being: subjective well-being and the capabilities approach. In this paper, I argue that philosophers ought to treat quality of life measures/PROMs as a distinct from these theories. I argue that quality of life/PROMs serve healthcare as vehicles for patient-centered care and this has important consequences for how we theorize these measures. To this end, two requirements set them apart from measures of subjective well-being and the capabilities approach: quality of life/PROMs need to be patient-directed and inclusive.
KeywordsEpidemiology Measurement Quality of life Patient centered care Subjective well being Capabilities approach to quality of life
I’d like to thank the anonymous reviewers who helped to make this paper sharper and more intelligible. Also thank you to the editors of this special issue, Sean Valles and Jonathan Kaplan for being so helpful and patient. All errors or infelicities are my own.
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