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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)

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 develop...

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Autores principales: Quinn, Lauren Marie, Shukla, David, Greenfield, Sheila Margaret, Barrett, Tim, Garstang, Joanna, Boardman, Felicity, Litchfield, Ian, Dayan, Colin, Gardner, Christine, Connop, Clair, Lepley, Amanda, Narendran, Parth
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9024254/
https://www.ncbi.nlm.nih.gov/pubmed/35450871
http://dx.doi.org/10.1136/bmjdrc-2021-002750
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author Quinn, Lauren Marie
Shukla, David
Greenfield, Sheila Margaret
Barrett, Tim
Garstang, Joanna
Boardman, Felicity
Litchfield, Ian
Dayan, Colin
Gardner, Christine
Connop, Clair
Lepley, Amanda
Narendran, Parth
author_facet Quinn, Lauren Marie
Shukla, David
Greenfield, Sheila Margaret
Barrett, Tim
Garstang, Joanna
Boardman, Felicity
Litchfield, Ian
Dayan, Colin
Gardner, Christine
Connop, Clair
Lepley, Amanda
Narendran, Parth
author_sort Quinn, Lauren Marie
collection PubMed
description 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.
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spelling pubmed-90242542022-05-06 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) Quinn, Lauren Marie Shukla, David Greenfield, Sheila Margaret Barrett, Tim Garstang, Joanna Boardman, Felicity Litchfield, Ian Dayan, Colin Gardner, Christine Connop, Clair Lepley, Amanda Narendran, Parth BMJ Open Diabetes Res Care Immunology and Transplantation 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. BMJ Publishing Group 2022-04-21 /pmc/articles/PMC9024254/ /pubmed/35450871 http://dx.doi.org/10.1136/bmjdrc-2021-002750 Text en © 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. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Immunology and Transplantation
Quinn, Lauren Marie
Shukla, David
Greenfield, Sheila Margaret
Barrett, Tim
Garstang, Joanna
Boardman, Felicity
Litchfield, Ian
Dayan, Colin
Gardner, Christine
Connop, Clair
Lepley, Amanda
Narendran, Parth
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)
title 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)
title_full 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)
title_fullStr 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)
title_full_unstemmed 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)
title_short 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)
title_sort 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)
topic Immunology and Transplantation
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9024254/
https://www.ncbi.nlm.nih.gov/pubmed/35450871
http://dx.doi.org/10.1136/bmjdrc-2021-002750
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