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First person epidemiological measures: vehicles for patient centered care

  • S.I.: Philosophy of Epidemiology
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Abstract

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.

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Notes

  1. To be clear, I am not suggesting that measures of quality of life/PROMs are independent from questions about well-being, i.e., how well life is going for a population of people. On the contrary, quality of life/PROMs are, in a general sense, quite obviously concerned with how life is going for patients. But I do not think that much follows, theoretically, from this acknowledgement.

  2. For a discussion of how, in practice, the capability approach applied to quality of life/PROMs tends to conflate functionings with disability and chronic illness see (McClimans 2010a).

  3. For a philosophical discussion of this issue see (McClimans 2010b, 2011).

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Acknowledgements

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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Authors and Affiliations

  1. School of Nursing, University College Cork, Cork, Ireland

    Leah M. McClimans

  2. Department of Philosophy, University of South Carolina, Columbia, SC, 29205, USA

    Leah M. McClimans

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  1. Leah M. McClimans
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Correspondence to Leah M. McClimans.

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McClimans, L.M. First person epidemiological measures: vehicles for patient centered care. Synthese 198 (Suppl 10), 2521–2537 (2021). https://doi.org/10.1007/s11229-019-02094-z

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