A core outcome set for best care for the dying person : Results of an international Delphi study and consensus meeting
(2025) In Palliative Medicine 39(1). p.163-175- 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... (More)
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.
(Less)
- author
- author collaboration
- organization
- publishing date
- 2025-01
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- core outcome set, Delphi method, palliative care, quality of care, terminal care
- in
- Palliative Medicine
- volume
- 39
- issue
- 1
- pages
- 13 pages
- publisher
- SAGE Publications
- external identifiers
-
- pmid:39629728
- scopus:85211567282
- ISSN
- 0269-2163
- DOI
- 10.1177/02692163241300867
- language
- English
- LU publication?
- yes
- id
- 281bbd03-2cf7-4586-921d-b5d5f60d9e48
- date added to LUP
- 2025-01-30 11:44:43
- date last changed
- 2025-07-04 00:42:43
@article{281bbd03-2cf7-4586-921d-b5d5f60d9e48,
abstract = {{<p>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.</p>}},
author = {{Zambrano, Sofia C. and Egloff, Martina and Gonzalez-Jaramillo, Valentina and Christen-Cevallos Rosero, Andri and Allan, Simon and Barnestein-Fonseca, Pilar and Ellershaw, John and Fischer, Claudia and Haugen, Dagny Faksvåg and Lunder, Urška and Martin-Rosello, Marisa and Mason, Stephen and Rasmussen, Birgit and Sigurðardóttir, Valgerdur and Simon, Judt and Tripodoro, Vilma A. and van der Heide, Agnes and van Zuylen, Lia and Voltz, Raymond and Fürst, Carl Johan and Williamson, Paula R. and Eychmüller, Steffen}},
issn = {{0269-2163}},
keywords = {{core outcome set; Delphi method; palliative care; quality of care; terminal care}},
language = {{eng}},
number = {{1}},
pages = {{163--175}},
publisher = {{SAGE Publications}},
series = {{Palliative Medicine}},
title = {{A core outcome set for best care for the dying person : Results of an international Delphi study and consensus meeting}},
url = {{http://dx.doi.org/10.1177/02692163241300867}},
doi = {{10.1177/02692163241300867}},
volume = {{39}},
year = {{2025}},
}