{ "abstract": "Background: 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.”\n\nMethods: 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.\n\nResults: 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.\n\nConclusions: 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.\n\nSupplementary Information: The online version contains supplementary material available at https://doi.org/10.1186/s12916-026-05139-6.", "abstract_shown": true, "affiliations": [ "Institute of Engineering Univ. Grenoble Alpes, CNRS, CHU Grenoble Alpes, Grenoble INP, TIMC-IMAG, Grenoble, 38000 France", "Palliative Care Department, Centre Hospitalier Universitaire de Grenoble, Grenoble, France", "Nantes Université, Tours Université, CHU Nantes, CHU Tours, INSERM, Methods in Patients-centered Outcomes and Health Research, SPHERE, Nantes, F-44000 France", "Service Interdisciplinaire Douleur, Nantes Université, CHU de Nantes, Soins Palliatifs et de Support, Médecine intégrative, Nantes, F-44000 France", "Département Recherche, Enseignement, Formation (DREF), Maison Médicale Jeanne Garnier, Paris, France", "Palliative Care Department, Centre Hospitalo, Universitaire de Nice, Nice, France", "Palliative Care Department, Centre Hospitalo, Universitaire de Caen, Caen, France", "EA3738 - Centre pour l’Innovation en cancérologie de Lyon-UFR Faculté de Médecin Lyon-Sud-Université Claude Bernard Lyon 1, Lyon, France", "Palliative Care Department, Strasbourg Translational Medicine Federation, University Hospital of Strasbourg, CNRS UPR 3212, ITI NeuroStra, University of Strasbourg, Strasbourg, France", "Research on Healthcare Performance RESHAPE, INSERM U1290, Université Claude Bernard Lyon 1, Lyon, France", "Freelance Information Specialist, Paris, France", "NHS, Edinburgh, Scotland", "Social Sciences, Pacte Research Unit, UMR 5194, Grenoble, France", "Chargée de coordination à la Cellule d’Animation Régionale de Soins Palliatifs de la région Auvergne Rhône Alpes - Groupement de Coopération Sanitaire des Hôpitaux Universitaires Rhône Alpes Auvergne, Lyon, France", "Department of Public Health, Hospital Champagne Sud, Troyes, France", "Department of Palliative, Rehabilitation, and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX USA", "Department of Cardiology, Centre Hospitalo-Universitaire de Besancon, Besancon, France", "SINERGIES, University Marie & Louis Pasteur, 19 rue Ambroise Paré, Besançon, 25000 France" ], "article_type": "research article", "arxiv": null, "author_total": 19, "authors": [ { "affs": [ 0, 1 ], "name": "Cécile Barbaret", "orcid": "0000-0001-7144-7115" }, { "affs": [ 0, 1 ], "name": "Raphaëlle Habert Dantigny" }, { "affs": [ 2, 3 ], "name": "Adrien Evin" }, { "affs": [ 4 ], "name": "Sophie Chrétien" }, { "affs": [ 5 ], "name": "Flora Tremellat" }, { "affs": [ 6 ], "name": "Sarah Mensi" }, { "affs": [ 7 ], "name": "Guillaume Economos" }, { "affs": [ 8 ], "name": "Laurent Calvel" }, { "affs": [ 9 ], "name": "Héloïse Rouze" }, { "affs": [ 10 ], "name": "Caroline Tête" }, { "affs": [ 11 ], "name": "Sébastien Moine" }, { "affs": [ 12 ], "name": "Martin Julier-Costes" }, { "affs": [ 13 ], "name": "Valérie Amouroux-Gorsse" }, { "affs": [ 1 ], "name": "Isabelle Lavault" }, { "affs": [ 1 ], "name": "Justine Bret" }, { "affs": [ 14 ], "name": "Jan Crushiel" }, { "affs": [ 15 ], "name": "Eduardo Bruera" }, { "affs": [ 16, 17 ], "name": "Fiona Ecarnot" }, { "affs": [ 14 ], "name": "Stéphane Sanchez" } ], "bibtex": "https://research.draconitic.com/paper/2q5bk8kvkp9ss.bib", "cited_by": 0, "doi": "10.1186/s12916-026-05139-6", "fulltext_url": "https://pmc.ncbi.nlm.nih.gov/articles/PMC13746475/", "id": "2q5bk8kvkp9ss", "issns": [ "1741-7015" ], "landing_url": "https://doi.org/10.1186/s12916-026-05139-6", "language": "en", "licence": "CC-BY-NC-ND-4.0", "licence_label": "CC BY-NC-ND 4.0", "licence_source": "article", "licence_url": "https://creativecommons.org/licenses/by-nc-nd/4.0/", "metadata_licence": null, "native_subjects": [ [ "heading", "Research" ], [ "openalex", "2739|Palliative Care and End-of-Life Issues" ] ], "openalex": "W7202070473", "pdf_url": null, "pmcid": "PMC13746475", "pmid": "43000374", "published": "2026-08-10", "publisher": "BMC", "ris": "https://research.draconitic.com/paper/2q5bk8kvkp9ss.ris", "sources": [ { "first_seen": "2026-11-11T12:23:48Z", "native_id": "PMC13746475", "source": "pmc", "url": "https://doi.org/10.1186/s12916-026-05139-6" } ], "subjects": [ { "field": "medicine", "origin": "openalex:2739|Palliative Care and End-of-Life Issues", "subfield": "epidemiology-public-health" } ], "title": "The top 10 priorities in palliative care research in France: final results of the AXEPRO study", "title_text": "The top 10 priorities in palliative care research in France: final results of the AXEPRO study", "type": "peer-reviewed", "updated_at": "2026-11-12T12:22:46Z", "url": "https://research.draconitic.com/paper/2q5bk8kvkp9ss", "venue": "BMC Medicine", "versions": [] }