TY - JOUR
T1 - EarLy Surveillance for Autoimmune diabetes
T2 - protocol for a qualitative study of general population and stakeholder perspectives on screening for type 1 diabetes in the UK (ELSA 1)
AU - Quinn, Lauren Marie
AU - Shukla, David
AU - Greenfield, Sheila Margaret
AU - Barrett, Tim
AU - Garstang, Joanna
AU - Boardman, Felicity
AU - Litchfield, Ian
AU - Dayan, Colin
AU - Gardner, Christine
AU - Connop, Clair
AU - Lepley, Amanda
AU - Narendran, Parth
N1 - © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
PY - 2022/4/21
Y1 - 2022/4/21
N2 - OBJECTIVE: Type 1 diabetes (T1D) is the most common form of diabetes in children, accounting for 96% of cases, with 29 000 children affected in the UK. Studies have recently identified immunotherapies that safely delay the development of T1D for at least 3 years, and further therapies are in development. General population screening programs 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 program of testing for T1D in the general population, how they would want to be informed and participate in such a program, and how any barriers to recruitment and participation can be addressed. Additionally, the views of stakeholders who would be involved in the testing program will be collected and analyzed.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, analyzed 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 program. Where possible, all aspects of this study will be performed remotely by phone or online to minimize 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.
AB - OBJECTIVE: Type 1 diabetes (T1D) is the most common form of diabetes in children, accounting for 96% of cases, with 29 000 children affected in the UK. Studies have recently identified immunotherapies that safely delay the development of T1D for at least 3 years, and further therapies are in development. General population screening programs 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 program of testing for T1D in the general population, how they would want to be informed and participate in such a program, and how any barriers to recruitment and participation can be addressed. Additionally, the views of stakeholders who would be involved in the testing program will be collected and analyzed.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, analyzed 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 program. Where possible, all aspects of this study will be performed remotely by phone or online to minimize 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.
KW - Child
KW - Diabetes Mellitus, Type 1/diagnosis
KW - Humans
KW - Qualitative Research
KW - United Kingdom/epidemiology
UR - http://www.scopus.com/inward/record.url?scp=85128628852&partnerID=8YFLogxK
U2 - 10.1136/bmjdrc-2021-002750
DO - 10.1136/bmjdrc-2021-002750
M3 - Article
C2 - 35450871
SN - 2052-4897
VL - 10
JO - BMJ Open Diabetes Research and Care
JF - BMJ Open Diabetes Research and Care
IS - 2
M1 - e002750
ER -
