Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol
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STUDY PROTOCOL
Open Access
Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol Sofia C. Zambrano1* , Dagny Faksvåg Haugen2, Agnes van der Heide3, Vilma A. Tripodoro4, John Ellershaw5, Carl Johan Fürst6, Raymond Voltz7, Stephen Mason5, María L. Daud4, Gustavo De Simone4, Kerstin Kremeike7, Svandis Iris Halfdanardottir8, Valgerdur Sigurdardottir8, Jeremy Johnson9, Simon Allan10, Haroon Hafeez11, Catarina Simões12, Katrin Ruth Sigurdardottir2, Birgit H. Rasmussen6, Paula Williamson13, and Steffen Eychmüller1 in collaboration with the iLIVE consortium
Abstract Background: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. Methods: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. (Continued on next page)
* Correspondence: [email protected] 1 University Center for Palliative Care, Department of Oncology, Inselspital, Bern University Hospital, Bern, Switzerland Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creat
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