Patient-reported outcome measures in palliative care: A systematic review to inform health policy and health system performance.

BACKGROUND

Health systems increasingly recognise palliative care as an essential component of universal health coverage. Assessing palliative care quality and value remains challenging, as key outcomes are often missed by routine indicators. Patient-reported outcome measures (PROMs) can address this gap, but their use remains fragmented.

OBJECTIVE

To synthesise evidence on patient-reported outcomes in palliative care, the PROMs used to measure them, and implementation barriers and facilitators.

METHODS

Five databases (PubMed, Web of Science, Scopus, CINAHL, and the Cochrane Library were searched between 1989 and December 2025, following PRISMA guidelines. Studies focusing on PROM use in palliative care were included. Data were analysed to map outcome domains, commonly used instruments, and implementation barriers and facilitators. Study quality was assessed using Joanna Briggs Institute critical appraisal checklists.

RESULTS

Seventy studies were included. Most were conducted in high- and middle-income countries and focused on patients with cancer. Physical, psychological, social, spiritual and quality-of-life outcomes were most frequently assessed. The most commonly used PROMs were the Integrated Palliative Care Outcome Scale (IPOS), Edmonton Symptom Assessment Scale (ESAS), and the EORTC QLQ-C15-PAL instrument. Implementation challenges included patient frailty, workload and time constraints, limited standardisation, and poor integration into clinical workflows and health information systems. Heterogeneity across populations, settings, and PROMs limited comparability.

CONCLUSIONS

The findings provide practical guidance for health systems seeking to integrate PROMs into palliative care and support patient-centred quality monitoring and service evaluation. Greater standardisation, digital integration, and policy support are needed to strengthen service development, quality improvement, and health system accountability.