Patient‐reported outcome measures (PROMs) to guide clinical care: recommendations and challenges

To the Editor: We read with interest the article by Agarwal and colleagues1 outlining the recommendations from the Health Services Research Association of Australia and New Zealand for implementing patient‐reported outcome measures (PROMs) to guide clinical care. The article regrettably fails to acknowledge that most of the commonly used PROMs — largely developed without direct patient participation — may merely provide a patient‐rated version of a measure that nevertheless reflects the clinician’s or researcher’s, not the patient’s, perspective.2,3

Importantly, “patient‐reported” conveys only that the measurement instrument — usually a scale or questionnaire — is completed by the patient. The emphasis is placed on the source of the information (ie, the patient) rather than on its content. It does not automatically imply that the information thus obtained is necessarily of value or relevance to the patient. As an attempt to shed light on this issue, our group elaborated a classification system for PROMs according to the degree of patient involvement in their development:2

• patient‐generated PROMs — a type of PROM developed entirely from the patient perspective, as at all stages of PROM development the researchers are themselves patients;
• patient‐centred PROMs — a kind of PROM that explicitly incorporates, to a greater or lesser extent, patient priorities, given that patients themselves codeveloped the PROM jointly with other stakeholders (eg, clinicians);
• patient‐valued PROMs — a variety of PROM developed without patient input but valued by most patients because it reflects, at least in part, their priorities; and
• patient‐irrelevant PROMs — a type of PROM developed entirely without patient participation, whose contents are evaluated as not relevant by patients themselves.

Fortunately, the epistemic injustice of disregarding the patient’s perspective in PROMs development is being progressively abandoned, and there seems to be a growing consensus that patients should be significantly involved — through truly participatory methods — in developing any new PROM.2,4,5 Without genuinely incorporating the patient’s perspective in PROMs development, PROMs collection will not contribute to a true and meaningful involvement of patients in their health care.