• Sofia C Zambrano, Martina Egloff, Valentina Gonzalez-Jaramillo, Andri Christen-Cevallos Rosero, Simon Allan, Pilar Barnestein-Fonseca, John Ellershaw, Claudia Fischer, Dagny Faksvåg Haugen, Urška Lunder, Marisa Martin-Rosello, Stephen Mason, Birgit Rasmussen, Valgerdur Sigurðardóttir, Judt Simon, Vilma A Tripodoro, Agnes van der Heide, Lia van Zuylen, Raymond Voltz, Carl Johan Fürst, Paula R Williamson, Steffen Eychmüller, and iLIVE.
• Institute of Social and Preventive Medicine, ISPM, University of Bern, Bern, Switzerland.
• Palliat Med. 2024 Dec 4: 26921632413008672692163241300867.

BackgroundOutcome measurement is essential to progress clinical practice and improve patient care.AimTo develop a Core Outcome Set for best care for the dying person.DesignWe followed the Core Outcome Measures in Effectiveness Trials (COMET) Initiative guidelines, which involved identifying potential outcomes via a systematic literature review (n = 619 papers) and from participants in the "iLIVE" project (10 countries: 101 patients, 37 family members, 63 clinicians), followed by a two-round Delphi study, and a consensus meeting.Setting/ParticipantsClinicians, researchers, family members, and patient representatives from 20 countries participated in the Delphi Rounds 1 (n = 462) and 2 (n = 355). Thirty-two participants attended the consensus meeting.ResultsFrom the systematic review and the cohort study we identified 256 and 238 outcomes respectively, from which we extracted a 52-outcome list covering areas related to the patients' physical, psychosocial, and spiritual dimensions, family support, place of care and care delivery, relational aspects of care, and general concepts. A preliminary 13-outcome list reached consensus during the Delphi. At the consensus meeting, a 14-item Core Outcome Set was ratified by the participants.ConclusionsThis study involved a large and diverse sample of key stakeholders in defining the core outcome set for best care for the dying person, focusing on the last days of life. By actively integrating the perspectives of family carers and patient representatives from various cultural backgrounds this Core Outcome Set enriches our understanding of essential elements of care for the dying and provides a solid foundation for advancing quality of end-of-life care.

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