The top 10 priorities in palliative care research in France: final results of the AXEPRO study

Abstract

Prioritizing research is essential to reduce waste, particularly in palliative care, a field with historically limited investment. To identify and rank the top 10 unanswered palliative care research questions in France according to patients, caregivers, healthcare professionals and volunteers, a three-step priority-setting study was conducted between January 23, 2022, and September 24, 2024, based on the “Palliative and End of Life Care Research Priorities Project.” Step 1 identified unanswered questions through an online unstructured questionnaire available online for 6 months using Limesurvey ® . A multidisciplinary steering committee comprising two board-certified palliative care physicians, two methodologists, three nurses, a sociologist, an anthropologist and one information specialist, deleted duplicates, modified questions using the PICO format, did a literature review for each question using four Database. Step 1 included patients, caregivers, healthcare professionals and volunteers with at least a 2-year palliative care experience, recruited via the national end-of-life research platform and the SFAP (National Society for Palliative Care). Step 2 consisted of a six-month first-round prioritization survey. Step 2 have the same inclusion criteria as phase 1. Recruitment was identical to phase 1 and via 10 teaching hospitals. Priorities were established by consensus using average rankings based on the Borda method. Step 3 used a nominal group to reach consensus on the top 10 priorities. Inclusion criteria and recruitment were identical to phase 1 and 2. Patients were recruited via Grenoble teaching hospital. Step 3 involved 17 participants (3 patients, 5 family caregivers, 4 healthcare professionals, 5 volunteers). Verbatim discussions were analyzed using triangulation to identify major and minor themes underlying prioritization decisions. In Step 1, 560 verbatim responses generated 482 research questions, of which 32 were already addressed in the literature. Step 2 analyzed 413 questionnaires, with euthanasia emerging as the top theme. In Step 3, the highest-ranked question focused on improving patient information and supporting informed consent at the end of life. Improving patient information emerged as a central issue, relevant to patient care, societal decision-making, and efforts to enhance patient involvement in palliative care research. Clinical teams and researchers need to address the unanswered questions quickly.