Barrington, Heather 
ORCID: 0000-0001-9103-2670, Young, Bridget ORCID: 0000-0001-6041-9901 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-.
ISSN 2044-6055, 2044-6055
Abstract
Objectives 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. Design 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. Results 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. Conclusions 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: | statistics & research methods, general medicine (see internal medicine), surgery |
| Divisions: | Faculty of Health & Life Sciences Faculty of Health & Life Sciences > Inst. Population Health |
| Depositing User: | Symplectic Admin |
| Date Deposited: | 27 Sep 2021 09:31 |
| Last Modified: | 22 May 2026 16:17 |
| DOI: | 10.1136/bmjopen-2021-051066 |
| Open Access URL: | https://bmjopen.bmj.com/content/bmjopen/11/9/e0510... |
| Related Websites: | |
| URI: | https://livrepository.liverpool.ac.uk/id/eprint/3138454 |
| Disclaimer: | The University of Liverpool is not responsible for content contained on other websites from links within repository metadata. Please contact us if you notice anything that appears incorrect or inappropriate. |
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