Methods for conducting international Delphi surveys to optimise global participation in Core Outcome Set development: a case study in gastric cancer informed by a comprehensive literature review.

Author:

Alkhaffaf Bilal1ORCID,Blazeby Jane M2,Metryka Aleksandra3,Glenny Anne-Marie4,Adeyeye Ademola5,Costa Paulo Matos6,Val Ismael Diez del7,Gisbertz Suzanne8,Guner Ali9,Law Simon10,Lee Hyuk-Joon11,Li Ziyu12,Nakada Koji13,Nunez Rafael Mauricio Restrepo14,Reim Daniel15,Reynolds John V16,Vorwald Peter17,Zanotti Daniela18,Allum William19,Chaudry Asif19,Griffiths Ewen18,Williamson Paula20,Bruce Iain21

Affiliation:

1. Salford Royal NHS Foundation Trust

2. University of Bristol

3. Manchester University Hospitals NHS Foundation Trust

4. University of Manchester

5. University of Ilorin Teaching Hospital

6. Hospital Garcia de Orta

7. Hospital Universitario Basurto

8. Amsterdam UMC

9. Karadeniz Teknik Universitesi

10. University of Hong Kong

11. Seoul National University College of Medicine

12. Peking University Cancer Hospital and Institute

13. The Jikei University Daisan Hospital

14. Hospital Rey Juan Carlos

15. TUM School of Medicine

16. Broomfield Hospital

17. Hospital Universitario Fundacion Jimenez Diaz

18. University Hospitals Birmingham NHS Foundation Trust

19. Royal Marsden NHS Foundation Trust

20. University of Liverpool

21. Manchester University NHS Foundation Trust

Abstract

Abstract BackgroundCore outcome sets (COS) should be relevant to key stakeholders, and widely applicable and usable. Ideally, they are developed for international use to allow optimal data synthesis from trials. Electronic Delphi surveys are commonly used to facilitate global participation; however, this has limitations. It is common for these surveys to be conducted in a single language potentially excluding those not fluent in that tongue. The aim of this study is to summarise current approaches for optimising international participation in Delphi studies and make recommendations for future practice.MethodsA comprehensive literature review of current approaches to translating Delphi surveys for COS development was undertaken. A standardised methodology adapted from international guidance derived from 12 major sets of translation guidelines in the field of outcomes reporting was developed. As a case study this was applied to a COS project for surgical trials in gastric cancer to translate a Delphi survey into 7 target languages from regions active in gastric cancer research.Results332 abstracts were screened and four studies addressing COS development in rheumatoid and osteo-arthritis, vascular malformations and polypharmacy were eligible for inclusion. There was wide variation in methodological approaches to translation, including the number of forward translations, the inclusion of back translation, the employment of cognitive debriefing and how discrepancies and disagreements were handled. Important considerations were identified during the development of the gastric cancer survey including establishing translation groups, timelines, understanding financial implications, strategies to maximise recruitment and regulatory approvals. The methodological approach to translating the Delphi surveys were easily reproducible by local collaborators and resulted in an additional 637 participants to the 315 recruited to complete the source language survey. 99% of patients and 97% of healthcare professionals from non-English speaking regions used translated surveys.ConclusionConsideration of the issues described will improve planning by other COS developers and can be used to widen international participation from both patients and healthcare professionals.

Publisher

Research Square Platform LLC

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