Patient participation in Delphi surveys to develop core outcome sets: systematic review.

Barrington, Heather ORCID: 0000-0001-9103-2670, Young, Bridget and Williamson, Paula R ORCID: 0000-0001-9802-6636
(2021) Patient participation in Delphi surveys to develop core outcome sets: systematic review. BMJ open, 11 (9). e051066 - ?.

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<h4>Objectives</h4>To describe the design and conduct of core outcome set (COS) studies that have included patients as participants, exploring how study characteristics might impact their response rates.<h4>Design</h4>Systematic review of COS studies published between 2015 and 2019 that included more than one patient, carer or representative as participants (hereafter referred to as patients for brevity) in scoring outcomes in a Delphi.<h4>Results</h4>There were variations in the design and conduct of COS studies that included patients in the Delphi process, including differing: scoring and feedback systems, approaches to recruiting patients, length of time between rounds, use of reminders, incentives, patient and public involvement, and piloting. Minimal reporting of participant characteristics and a lack of translation of Delphi surveys into local languages were found. Additionally, there were indications that studies that recruited patients through treatment centres had higher round two response rates than studies recruiting through patient organisations.<h4>Conclusions</h4>Variability was striking in how COS Delphi surveys were designed and conducted to include patient participants and other stakeholders. Future research is needed to explore what motivates patients to take part in COS studies and what factors influence COS developer recruitment strategies. Improved reporting would increase knowledge of how methods affect patient participation in COS Delphi studies.

Item Type: Article
Uncontrolled Keywords: Humans, Treatment Outcome, Consensus, Research Design, Delphi Technique, Patient Participation, Outcome Assessment, Health Care
Divisions: Faculty of Health and Life Sciences
Faculty of Health and Life Sciences > Institute of Population Health
Depositing User: Symplectic Admin
Date Deposited: 27 Sep 2021 09:31
Last Modified: 13 Nov 2021 01:13
DOI: 10.1136/bmjopen-2021-051066
Open Access URL: