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. 2018 Feb 17;19(1):113.
doi: 10.1186/s13063-018-2493-y.

Survey indicated that core outcome set development is increasingly including patients, being conducted internationally and using Delphi surveys

Alice M Biggane  1   2   3 , Lucy Brading  4 , Philippe Ravaud  5   6   7   8 , Bridget Young  9 , Paula R Williamson  10
Affiliations

Survey indicated that core outcome set development is increasingly including patients, being conducted internationally and using Delphi surveys

Alice M Biggane et al. Trials. .

Erratum in

Abstract

Background: There are numerous challenges in including patients in a core outcome set (COS) study, these can vary depending on the patient group. This study describes current efforts to include patients in the development of COS, with the aim of identifying areas for further improvement and study.

Methods: Using the COMET database, corresponding authors of COS projects registered or published from 1 January 2013 to 2 February 2017 were invited via a personalised email to participate in a short online survey. The survey and emails were constructed to maximise the response rate by following the academic literature on enhancing survey responses. Personalised reminder emails were sent to non-responders. This survey explored the frequency of patient input in COS studies, who was involved, what methods were used and whether or not the COS development was international.

Results: One hundred and ninety-two COS developers were sent the survey. Responses were collected from 21 February 2017 until 7 May 2017. One hundred and forty-six unique developers responded, yielding a 76% response rate and data in relation to 195 unique COSs (as some developers had worked on multiple COSs). Of focus here are their responses regarding 162 COSs at the published, completed or ongoing stages of development. Inclusion of patient participants was indicated in 87% (141/162) of COSs in the published completed or ongoing stages and over 94% (65/69) of ongoing COS projects. Nearly half (65/135) of COSs included patient participants from two or more countries and 22% (30/135) included patient participants from five or more countries. The Delphi survey was reported as being used singularly or in combination with other methods in 85% (119/140) of projects. Almost a quarter (16/65) of ongoing studies reported using a combination of qualitative interviews, Delphi survey and consensus meeting.

Conclusions: These findings indicated that the Delphi survey is the most popular method of facilitating patient participation, while the combination of qualitative interviews, Delphi survey and consensus meetings is the most popular combination of methods. The increased inclusion of patient participants in the development of COSs is encouraging, as is the international approach to COS development that some developers are adopting.

Keywords: Core outcome sets; Delphi; Patient engagement; Patient participation; Survey.

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Conflict of interest statement

Authors’ information

Not applicable

Ethics approval and consent to participate

Ethical approval was granted from Health and Life Sciences Committee on Research Ethics (Human participants, tissues and databases) at The University of Liverpool on 16 February 2017 (reference 1339). All survey participants were provided with full written information prior to survey commencement. Consent was assumed upon entering the survey and participants were free to leave at any time without providing a reason.

Consent for publication

Not applicable

Competing interests

Paula R Williamson chairs the Management Group of the COMET Initiative.

Bridget Young is a member of the COMET PoPPIE (People and Public Participation, Involvement and Engagement) Working Group.

No other authors have any competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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