Patient participation in Delphi surveys to develop core outcome sets: systematic review
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 pa...
Autores principales: | , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BMJ Publishing Group
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8413947/ https://www.ncbi.nlm.nih.gov/pubmed/34475183 http://dx.doi.org/10.1136/bmjopen-2021-051066 |
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author | Barrington, Heather Young, Bridget Williamson, Paula R |
author_facet | Barrington, Heather Young, Bridget Williamson, Paula R |
author_sort | Barrington, Heather |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-8413947 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | BMJ Publishing Group |
record_format | MEDLINE/PubMed |
spelling | pubmed-84139472021-09-22 Patient participation in Delphi surveys to develop core outcome sets: systematic review Barrington, Heather Young, Bridget Williamson, Paula R BMJ Open Research Methods 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. BMJ Publishing Group 2021-09-01 /pmc/articles/PMC8413947/ /pubmed/34475183 http://dx.doi.org/10.1136/bmjopen-2021-051066 Text en © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/. |
spellingShingle | Research Methods Barrington, Heather Young, Bridget Williamson, Paula R Patient participation in Delphi surveys to develop core outcome sets: systematic review |
title | Patient participation in Delphi surveys to develop core outcome sets: systematic review |
title_full | Patient participation in Delphi surveys to develop core outcome sets: systematic review |
title_fullStr | Patient participation in Delphi surveys to develop core outcome sets: systematic review |
title_full_unstemmed | Patient participation in Delphi surveys to develop core outcome sets: systematic review |
title_short | Patient participation in Delphi surveys to develop core outcome sets: systematic review |
title_sort | patient participation in delphi surveys to develop core outcome sets: systematic review |
topic | Research Methods |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8413947/ https://www.ncbi.nlm.nih.gov/pubmed/34475183 http://dx.doi.org/10.1136/bmjopen-2021-051066 |
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