The top 10 priorities in adults living with type 1 diabetes in Ireland and the United Kingdom – A James Lind Alliance priority setting partnership

Author:

Newman Christine123ORCID,Kinsella Suzannah4,Rooney Peter1,Bromley Jake5,Connor Rachel6,Gajewska Kate7,Hannan Sinead8,Holt Richard I. G.9ORCID,Hubbard Julia6,Kavangh Columb5,Moffett Jinty5,Morris Anna10,Nathan Hilary6,Oliver Nick11ORCID,Petrie John R.12ORCID,Skarlatos Michael13,Treanor David5,Williams Pauline5,Dunne Fidelma P.123

Affiliation:

1. Institute for Clinical Trials, College of Medicine, Nursing and Health Sciences University of Galway Galway Ireland

2. Irish Collaborative Clinical Trial Network in Diabetes University of Galway Galway Ireland

3. Galway University Hospital Galway Ireland

4. James Lind Alliance, National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre University of Southampton Southampton UK

5. Diabetes Collaborative Clinical Trials Network Public and Patient Involvement Department University of Galway Galway Ireland

6. Breakthrough T1D (Formerly Juvenile Diabetes Research Foundation) London UK

7. Diabetes Ireland, Northwood Business Campus Dublin Ireland

8. Southern Trust, Health and Social Care Craigavon UK

9. Human Development and Health, Faculty of Medicine University of Southampton Southampton UK

10. Diabetes UK London UK

11. Imperial College London London UK

12. School of Health and Wellbeing, College of Medical, Veterinary and Life Sciences University of Glasgow Glasgow UK

13. Leicester Diabetes Centre Leicester UK

Abstract

AbstractAimsTo undertake a Priority Setting Partnership (PSP), identifying the most important unanswered questions in type 1 diabetes in Ireland and the United Kingdom and to compare these to priorities identified in a 2011 PSP.MethodsA steering committee (including eight individuals with lived experience/charity representatives and six clinicians) designed a survey which asked stakeholders to list three questions about type 1 diabetes. This was disseminated through social media, direct email contact, and printed posters. Following analysis, a second survey asked participants to rank these priorities in order of importance. The top questions were then carried forward to an online, 2 days final workshop where the final top 10 were ranked.ResultsThere were 1050 responses (64% female, 78% adults living with type 1 diabetes, 9% healthcare professionals, 9% family members) to the first survey and 2937 individual questions were submitted. Sixty‐five summary questions were submitted into a second survey, completed by 497 individuals (76% adults living with type 1 diabetes, 9% healthcare professionals, and 11% family members). Nineteen questions from the interim survey progressed to a final workshop, which identified the top 10 priorities through group discussion. As in 2011, there was emphasis on psychological health, diabetes‐related complications, and hypoglycaemia. New themes prioritised included artificial intelligence and women's health.ConclusionsThe research priorities, which have been identified using a robust and proven methodology, highlight the key concerns of those living with type 1 diabetes, their families and representatives, as well as clinicians in Ireland and the UK.

Funder

Health Research Board

Publisher

Wiley

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