Patient-reported outcomes versus proxy-reported outcomes in supportive and palliative care: a summary of recent literature
Eva Oldenburger, Julie Devlies, Dylan Callens, Maaike L. De Roo
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.