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. 2019 Nov 14;9(11):e032338.
doi: 10.1136/bmjopen-2019-032338.

Participating in core outcome set development via Delphi surveys: qualitative interviews provide pointers to inform guidance

Alice M Biggane  1   2 , Paula R Williamson  3 , Philippe Ravaud  2   4   5 , Bridget Young  6
Affiliations

Participating in core outcome set development via Delphi surveys: qualitative interviews provide pointers to inform guidance

Alice M Biggane et al. BMJ Open. .

Abstract

Objectives: To explore participants' views of Delphi surveys in core outcome set (COS) development.

Study design and setting: Patients and health professionals (n=24) from seven recently concluded COS studies that had involved a Delphi survey took part in semistructured qualitative interviews (telephone and email exchange). Interviews explored participants' understanding of COS and their experiences of the Delphi survey. Analysis was thematic.

Results: Several interviewees had previously participated in two or more COS or Delphi surveys. Those with multiple experiences of participation generally understood the purpose of COS and were satisfied with the Delphi survey. However, some interviewees who were first-time participants struggled to understand the purpose of COS and aspects of the Delphi survey, which limited their contribution and satisfaction with the study. Interviewees also differed in how they interpreted and subsequently used the written documentation provided to COS participants. Some interviewees wanted guidance regarding whose perspective to take into account when scoring outcomes and on how to use the scoring system. Interviewees reported being motivated to take part by the international and expert consensus aspects of the Delphi survey. A few interviewees reported experiencing either positive or negative emotional impacts arising from when they reviewed outcomes and stakeholder feedback.

Conclusion: This study identifies important information that should be communicated to COS Delphi study participants. It also indicates the importance of communicating about COS Delphi studies in ways that are accessible and salient to participants, to enhance their experience of participation and make the process more meaningful for all.

Keywords: Delphi survey; core outcome set development; patient participation.

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Conflict of interest statement

Competing interests: PRW chairs the Management Group of the COMET Initiative. BY is a member of the COMET People and Public Participation, Involvement and Engagement Working Group.

Figures

Figure 1
Figure 1
Sampling of core outcome set (COS) studies that fit our sampling framework. 1Reach of two COS studies is unknown, approximate relates to the other six COS studies. 2General Data Protection Regulation (GDPR) is a European Union (EU) law regulation regarding data protection and privacy for all individuals within the EU and the European Economic Area.
See this image and copyright information in PMC

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