Quinn, Lauren M., Shukla, David, Greenfield, Sheila Margaret, Barrett, Tim, Garstang, Joanna, Boardman, Felicity K., Litchfield, Ian, Dayan, Colin, Gardner, Christine, Connop, Clair, Lepley, Lepley and Narendran, Parth (2022) EarLy Surveillance for Autoimmune diabetes - protocol for a qualitative study of general population and stakeholder perspectives on screening for type 1 diabetes in the UK [ELSA 1]. BMJ Open Diabetes Research & Care, 10 (2). e002750. doi:10.1136/bmjdrc-2021-002750 ISSN 2052-4897.

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Abstract

Objective
Type 1 diabetes (T1D) is the most common form of diabetes in children, accounting for 96% of all diabetes, with 29,000 children affected in the UK. Studies have recently identified immunotherapies that safely delay the development of T1D for at least three years, and further therapies are in development. General population screening programmes in other countries can now accurately identify children with presymptomatic T1D who can be entered into prevention studies. The UK does not have such a system in place.

We aim to explore whether parents and children in the UK would want to be part of such a programme of testing for T1D in the general population, how they would want to be informed and participate in such a programme, and how any barriers to recruitment and participation can be addressed. Additionally, the views of stakeholders who would be involved in the testing programme will be collected and analysed.

Research Design and Methods
We will interview parents/guardians and children aged 3-13 years about their views on screening for T1D. We will recruit purposefully to ensure representation across ethnicities and socioeconomic groups. Interviews will be transcribed, analysed, and used to inform iterative co-design work with additional families to address any issues raised. Similar qualitative work will be undertaken with professional stakeholders who would be involved in implementing any future screening programme.
Where possible, all aspects of this study will be performed remotely by phone or online to minimise infection risk.

Conclusions
This qualitative study will provide the first insights into acceptability of testing and monitoring for T1D in the general population, from the perspective of families and stakeholders in the UK. Co-design work will help establish the barriers and identify strategies to mitigate and overcome these issues, as an important step towards consideration of national testing for T1D.

Item Type:	Journal Article
Divisions:	Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School
Journal or Publication Title:	BMJ Open Diabetes Research & Care
Publisher:	B M J Group
ISSN:	2052-4897
Official Date:	21 April 2022
Dates:	Date Event 21 April 2022 Published 19 March 2022 Accepted
Volume:	10
Number:	2
Article Number:	e002750
DOI:	10.1136/bmjdrc-2021-002750
Status:	Peer Reviewed
Publication Status:	Published
Access rights to Published version:	Open Access (Creative Commons)
Date of first compliant deposit:	4 April 2022
Date of first compliant Open Access:	18 May 2022
Funder:	This project is funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number NIHR202816).
Related URLs:	Publisher

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