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. 2025 Jan;39(1):163-175.
doi: 10.1177/02692163241300867. Epub 2024 Dec 4.

A core outcome set for best care for the dying person: Results of an international Delphi study and consensus meeting

Sofia C Zambrano  1   2 , Martina Egloff  2 , Valentina Gonzalez-Jaramillo  2 , Andri Christen-Cevallos Rosero  2 , Simon Allan  3 , Pilar Barnestein-Fonseca  4 , John Ellershaw  5 , Claudia Fischer  6 , Dagny Faksvåg Haugen  7   8 , Urška Lunder  9 , Marisa Martin-Rosello  4 , Stephen Mason  5 , Birgit Rasmussen  10   11 , Valgerdur Sigurðardóttir  12 , Judt Simon  6 , Vilma A Tripodoro  13   14 , Agnes van der Heide  15 , Lia van Zuylen  16 , Raymond Voltz  17 , Carl Johan Fürst  10 , Paula R Williamson  18 , Steffen Eychmüller  2 ; iLIVE
Affiliations

A core outcome set for best care for the dying person: Results of an international Delphi study and consensus meeting

Sofia C Zambrano et al. Palliat Med. 2025 Jan.

Abstract

Background: Outcome measurement is essential to progress clinical practice and improve patient care.

Aim: To develop a Core Outcome Set for best care for the dying person.

Design: We 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/participants: Clinicians, 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.

Results: From 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.

Conclusions: This 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.

Keywords: Delphi method; core outcome set; palliative care; quality of care; terminal care.

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Conflict of interest statement

Declaration of Conflicting InterestThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: PRW chairs the COMET Management Group. All other authors have no conflicts of interest to report.

Figures

Figure 1.
Figure 1.
Study overview.
See this image and copyright information in PMC

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