Abstract

Since the 1970s epidemiological measures focusing on ‘health-related quality of life’ or simply ‘quality of life’ have figured increasingly as endpoints in clinical trials. Before the 1970s these measures were known, generically, as performance measures or health status measures. Relabelled as ‘quality of life measures’ they were first used in cancer trials. They were relabelled again in the early 2000s as ‘patient-reported outcome measures’ or PRO Ms, in their service to the FDA to support drug labelling claims. To the limited degree that the philosophical literature addresses these measures, it tends to associate them with two of the major theories of well-being: subjective well-being and capability approach to quality of life. My general argument in this paper is that philosophers ought to treat quality of life measures/PROMs as distinct from these theories of well-being with their own theoretical commitments, values and epistemic concerns.

The primary reason I will give for this argument is that we cannot separate the rise in popularity of quality of life/PROMs from their role in representing and amplifying patients’ perspectives. The nature of this representation is due to a historical context in medicine that emphasizes patient autonomy and patient expertise. I will argue further that these measures are ‘patient-centred’ to the degree they are patient directed and inclusive. Finally, I will end by suggesting that the theory quality of life/PROMs needs is not an attribute theory or a theory of prudential value, but an epistemic theory that governs patient and others contributions to the construct.