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BMC Palliative Care
Published in: BMC Palliative Care 1/2020

Open Access 01-12-2020 | Care | Study protocol

Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol

Authors: Sofia C. Zambrano, Dagny Faksvåg Haugen, Agnes van der Heide, Vilma A. Tripodoro, John Ellershaw, Carl Johan Fürst, Raymond Voltz, Stephen Mason, María L. Daud, Gustavo De Simone, Kerstin Kremeike, Svandis Iris Halfdanardottir, Valgerdur Sigurdardottir, Jeremy Johnson, Simon Allan, Haroon Hafeez, Catarina Simões, Katrin Ruth Sigurdardottir, Birgit H. Rasmussen, Paula Williamson, Steffen Eychmüller, in collaboration with the iLIVE consortium

Published in: BMC Palliative Care | Issue 1/2020

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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.

Discussion

Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.
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Metadata
Title
Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol
Authors
Sofia C. Zambrano
Dagny Faksvåg Haugen
Agnes van der Heide
Vilma A. Tripodoro
John Ellershaw
Carl Johan Fürst
Raymond Voltz
Stephen Mason
María L. Daud
Gustavo De Simone
Kerstin Kremeike
Svandis Iris Halfdanardottir
Valgerdur Sigurdardottir
Jeremy Johnson
Simon Allan
Haroon Hafeez
Catarina Simões
Katrin Ruth Sigurdardottir
Birgit H. Rasmussen
Paula Williamson
Steffen Eychmüller
in collaboration with the iLIVE consortium
Publication date
01-12-2020
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2020
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-020-00654-6

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Correction

Correction to: Content validation of the EORTC QLQ-C15-PAL with advanced cancer patients and health care professionals from palliative care services in Chile