Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 May 14;24(1):135.
doi: 10.1186/s12904-025-01775-6.

Healthcare professionals' perspectives on assessing selected patient-reported outcome measures in specialist palliative care institutions: a multi-country mixed-methods study

Elisabeth Saly  1 , Judit Simon  1 , Claudia Fischer  2
Affiliations

Healthcare professionals' perspectives on assessing selected patient-reported outcome measures in specialist palliative care institutions: a multi-country mixed-methods study

Elisabeth Saly et al. BMC Palliat Care. .

Abstract

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.

Keywords: EQ-5D-5L; ESAS; Economic evaluation; Health-related quality-of-life; ICECAP-SCM; IPOS; Mixed-methods; Palliative care; Patient-reported outcome measures.

PubMed Disclaimer

Conflict of interest statement

Declarations. Ethics approval and consent to participate: The study did not require ethics approval (confirmed by the Ethics Committee of the Medical University of Vienna). Written informed consent for participation was obtained from all survey and interview participants. Participants were given detailed information about the study prior to their participation, including the purpose of the study, compliance with the General Data Protection Regulation and the right to withdraw at any time without consequences. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.

Figures

Fig. 1
Fig. 1
Study design and recruitment overview Legend to Fig. 1: AR = Argentina, CH = Switzerland, DE = Germany, EQ-5D-5L = EuroQuol 5 Dimension 5 Levels, ESAS = Edmonton Symptom Assessment Scale, ES = Spain, ICECAP-SCM = ICECAP Supportive Care Measure, IPOS = Integrated Palliative care Outcome Scale, IS = Iceland, NL = (The) Netherlands, NO = Norway, NZ = New Zealand, SE = Sweden, SI = Slovenia, UK = United Kingdom
Fig. 2
Fig. 2
a-c. Participants’ preferences regarding patient-reported outcome measures Legend to Fig. 2a-c: PROMs = patient-reported outcome measures. 2a) reflects the answers to the question 26: On a scale of 1 to 5, how easy would you find interpreting the results of the PROM questionnaires for clinical care (based on your experience with PROM data)?2b) reflects the answers to the question 28: In your opinion, how useful could the PROM questionnaires you have been using in the iLIVE study be in facilitating the delivery of patient-centred care in the palliative and EOL care setting?2c) reflects the answers to the question 25: Which one is your preferred PROM questionnaire for clinical routine care in palliative/EOL care settings?
Fig. 3
Fig. 3
Participants’ expectations about the effects of routine PROMs data collection on patients Legend to Fig. 3. PROMs = patient-reported outcomes measures
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

References

    1. Dawson J, Doll H, Fitzpatrick R, Jenkinson C, Carr AJ. The routine use of patient reported outcome measures in healthcare settings. BMJ. 2010;340:c186. - PubMed
    1. Weldring T, Smith SM. Patient-Reported outcomes (PROs) and Patient-Reported outcome measures (PROMs). Health Serv Insights. 2013;6:61–8. - PMC - PubMed
    1. Churruca K, Pomare C, Ellis LA, Long JC, Henderson SB, Murphy LED, et al. Patient-reported outcome measures (PROMs): A review of generic and condition-specific measures and a discussion of trends and issues. Health Expect. 2021;24(4):1015–24. - PMC - PubMed
    1. Knaul F, Radbruch L, Connor SR, de Lima L, Arreola-Ornelas H, Carniado O et al. How many adults and children are in need of palliative care worldwide? In: Connor SR, editor. Global Atlas of Palliative Care. 2nd Edition. London, UK2020.
    1. Sleeman KE, de Brito M, Etkind S, Nkhoma K, Guo P, Higginson IJ, et al. The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions. Lancet Glob Health. 2019;7(7):e883–92. - PMC - PubMed

LinkOut - more resources