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BACKGROUND: Despite the growing significance of patient-reported outcome measures (PROMs) for various purposes, including economic evaluations, implementing them effectively in palliative and end-of-life care settings remains a challenge. This study aimed to identify barriers and facilitators to PROMs data collection in inpatient specialist palliative care settings and to assess data collectors' applied perspectives on four relevant PROMs. METHODS: We conducted an explanatory sequential mixed-methods study, including an online survey (N = 29) and qualitative interviews (N = 12) with healthcare professionals and researchers from eleven countries. These participants had direct experience with PROMs data collection in specialist palliative care settings, either as part of the international iLIVE project or the Austrian PallPROMS study. The aim was to identify opportunities for optimising clinical care and other assessment purposes in the future. We conducted a descriptive analysis of the survey data and a thematic analysis of the qualitative data. RESULTS: The main reflected factors were patients' very limited ability to self-complete PROMs and the optimal timing and duration of assessments. Opinions on the usefulness of different PROMs varied significantly according to the role of the participants. Overall, setting-specific PROMs assessing symptom burden were preferred to more generic quality-of-life/wellbeing measures. Identified barriers and facilitators related to five themes: patient-related factors, data collection processes, PROM type, staff perceptions and organisational factors. Findings also highlighted better information and training needs. CONCLUSIONS: Prioritising care-relevant tools and carefully planning data collection, with main barriers addressed, can significantly increase the successful implementation of PROMs collection in specialist palliative care institutions. Since the preferred PROMs are not directly suitable for health economic evaluation, it is crucial to explore mapping alternatives for this purpose.

Original publication

DOI

10.1186/s12904-025-01775-6

Type

Journal

BMC Palliat Care

Publication Date

14/05/2025

Volume

24

Keywords

EQ-5D-5L, ESAS, Economic evaluation, Health-related quality-of-life, ICECAP-SCM, IPOS, Mixed-methods, Palliative care, Patient-reported outcome measures, Humans, Palliative Care, Patient Reported Outcome Measures, Qualitative Research, Surveys and Questionnaires, Male, Female, Health Personnel, Middle Aged, Adult, Attitude of Health Personnel, Austria, Perception