Patient-reported outcomes versus proxy-reported outcomes in supportive and palliative care: a summary of recent literature

Abstract

Purpose of the review Patient-reported outcomes are one of the most valuable clinical outcome measures. In palliative care, however, they are often difficult to retrieve. Therefore, proxy-reported outcomes are sometimes used as a surrogate. As there have been concerns about the validity of these by-proxy reports, the authors reviewed the most recent literature for the most recent insights in using proxy-reported outcomes. Recent findings The authors found very little new research on patient versus proxy-reported outcomes in palliative care. The results of the studies the authors found seem to correlate with older evidence concluding that there are many factors influencing a discrepancy between patients’ outcomes and how this is perceived by their proxies, such as the well-being paradox, caregiver burden, and the proxies’ own mental well-being. Summary While proxies’ opinions and knowledge of the patients’ values are important factors to consider, proxy-reported outcomes should be used with caution and viewed as a complementary perspective rather than a true substitute for the individual patient’s outcome.

Associations between health-related quality of life and subsequent need for specialized palliative care and hospital utilization in patients with gastrointestinal cancer—a prospective single-center cohort study

“…The White Paper on Outcome Measures in Palliative Care recommends using proxy assessments provided by healthcare professionals or caregivers for patients unable to complete questionnaires to accommodate this common issue [ 44 ]. Although the evidence of accuracy is inconsistent, this could offer valuable information on the patient’s symptoms and prompt clinical awareness of the need for SPC [ 44 , 45 ]. A clinician-reported outcome measure, such as the proxy-reported Integrated Palliative care Outcome Scale (IPOS) staff version, can accommodate this issue [ 46 ].…”

Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review

“…65 The use of proxies to help measure patient-reported outcome measures also may hold some promise for PLWD if viewed as complementary rather than substitutive. 66,67 Emerging data capture methods such as natural language processing (NLP) to measure ACP documentation, patient portals to measure electronic PCROs along with wearable devices, smartphones, and artificial intelligence to help measure prognosis and patient-related parameters may also yield future highly pragmatic outcome measures. 51,[68][69][70][71][72] In ADRD pragmatic trials conducted in the home or community setting, a multi-level approach will likely need to be considered for the collection of PCROs in the absence of healthcare records or administrative data collection methods.…”