Patient-reported outcome measurement in palliative care: A hermeneutic narrative review

Abstract

Objectives: Recent years have witnessed the rise of patient-reported outcome measures (PROMs) in palliative care (PC), particularly those focused on the standardized measurement of symptom burden. These measures seek to evaluate the quality of PC through the quantification of various aspects of potential suffering (e.g., sleeplessness, loss of appetite, and pain). Further, drawing on patient experience, they provide a framework for evaluating the effectiveness of, and at times expanding, PC services. The aim of this paper is to provide a theoretically informed normative critique of PROMS-PC through a critical engagement with heterogeneous literatures.

Methods: A hermeneutic narrative review underpinned by a view of "knowing" as an ongoing social accomplishment and inspired by complexity theory.

Results: This narrative review highlights some limitations to the development of PROMs, including the use of proxies to complete them, and how the outcomes may not always reflect either the character of PC or the key aspects of practice and experience therein.

Significance of results: In their current form, PROMs have the potential to skew understandings of service quality, for example, by privileging one aspect of quality, that is, physical symptoms over other aspects of quality such as communication with care providers.

Keywords: Palliative care; Patient-reported outcome measure; Quality of health care; Review.