Aim To evaluate the views of clinicians and researchers on their use of outcome measures and which questions are most important in palliative and end-of-life care.
Methods Online survey of professionals working in clinical care, clinical audit and research in palliative care across Europe and Africa identified through national and international associations and databases. Questions focused on measures used, reasons and which questions were important in two commonly used multidimensional measures, the Palliative care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS).
Results The overall completion rate was 59% (392/663). Three outcome measures were commonly used by over one in four respondents for clinical practice and over one in 10 for research: the Karnofsky Performance Scale (KPS), followed by the Edmonton Symptom Assessment Scale (ESAS) and the POS. Measures were used twice as often in clinical practice as in research. The main uses were similar: assessing patients' symptoms/needs (88% and 85% of POS and STAS users, respectively), monitoring changes (62%, 58%), evaluating care (61%, 48%) and assessing family needs (59%, 60%). Respondents rated the most important questions as pain, symptoms, emotional and family aspects. There were no differences in the choice of the most important questions between doctors and nurses or between researchers and clinicians.
Conclusions In palliative care, outcome measures often used in clinical practice are also often used in research. Questions relating to pain, symptoms, emotional needs and family concerns are consistently considered the most useful and important in palliative patient reported outcome measures (PROMs).
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This is a reprint of a paper that first appeared in BMJ Supportive & Palliative Care, 2012, Volume 2, pages 36–42.
Funding PRISMA is funded by the European Commission's Seventh Framework Programme (contract number: Health-F2-2008-201655) with the overall aim of co-ordinating high quality international research into end-of-life cancer care.
Competing interests Higginson conducted initial development of POS and STAS, and is interested in the results to improve outcome measures in the future. She receives no financial income from POS or STAS which are freely available http://pos-pal.org.
Ethics approval The Research Ethics Committee at King's College London (BDM/08/09-102) and the Ethics Committee of the Ugandan National Council for Science and Technology (IS 62) approved this study.
PRISMA Members Gwenda Albers, Barbara Antunes, Emma Bennett, Ana Barros Pinto, Claudia Bausewein, Dorothee Bechinger-English, Hamid Benalia, Lucy Bradley, Lucas Ceulemans, Barbara A Daveson, Luc Deliens, Noël Derycke, Martine de Vlieger, Let Dillen, Julia Downing, Michael Echteld, Natalie Evans, Dagny Faksvåg Haugen, Nancy Gikaara, Barbara Gomes, Marjolein Gysels, Sue Hall, Richard Harding, Irene J Higginson, Stein Kaasa, Jonathan Koffman, Pedro Lopes Ferreira, Johan Menten, Natalia Monteiro Calanzani, Fliss Murtagh, Bregje Onwuteaka-Philipsen, Roeline Pasman, Francesca Pettenati, Robert Pool, Tony Powell, Miel Ribbe, Katrin Sigurdardottir, Steffen Simon, Franco Toscani, Bart van den Eynden, Jenny van der Steen, Paul Vanden Berghe and Trudie van Iersel. PRISMA aims to provide evidence and guidance on best practice to ensure that research can measure and improve outcomes for patients and families. PRISMA activities aim to reflect the preferences and cultural diversities of citizens, the clinical priorities of clinicians and appropriately measure multidimensional outcomes across settings where end–of-life care is delivered.
Provenance and peer review Not commissioned; externally peer reviewed.