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自身免疫性糖尿病早期监测:英国人群和利益相关者对 1 型糖尿病筛查的看法进行定性研究的方案(ELSA1)。

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).

机构信息

Institute of Immunology and Immunotherapy, University of Birmingham, Birmingham, UK.

Institute of Applied Health Research, University of Birmingham, Birmingham, UK.

出版信息

BMJ Open Diabetes Res Care. 2022 Apr;10(2). doi: 10.1136/bmjdrc-2021-002750.

DOI:10.1136/bmjdrc-2021-002750
PMID:35450871
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9024254/
Abstract

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.

摘要

目的

1 型糖尿病(T1D)是儿童中最常见的糖尿病类型,占病例的 96%,在英国有 29000 名儿童受到影响。最近的研究已经确定了免疫疗法,可以安全地将 T1D 的发病时间推迟至少 3 年,并且还有更多的疗法正在开发中。其他国家的一般人群筛查计划现在可以准确识别出有前驱 T1D 的儿童,这些儿童可以参加预防研究。英国目前没有这样的系统。我们旨在探讨英国的父母和儿童是否愿意参与一般人群中 T1D 的检测计划,他们希望如何获得信息并参与该计划,以及如何解决任何招募和参与的障碍。此外,还将收集和分析参与检测计划的利益相关者的意见。

研究设计和方法

我们将对 3-13 岁的父母/监护人及其子女进行关于 T1D 筛查的意见访谈。我们将有目的地招募参与者,以确保代表不同种族和社会经济群体。访谈内容将被转录、分析,并用于指导与更多家庭的迭代共同设计工作,以解决提出的任何问题。还将对参与任何未来筛查计划的专业利益相关者进行类似的定性工作。在可能的情况下,这项研究的所有方面都将通过电话或在线远程进行,以最大限度地降低感染风险。

结论

这项定性研究将首次从英国家庭和利益相关者的角度提供关于一般人群中 T1D 检测和监测的可接受性的见解。共同设计工作将有助于确定障碍,并确定减轻和克服这些问题的策略,这是考虑在全国范围内进行 T1D 检测的重要步骤。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/75c1/9024254/618012fcedbf/bmjdrc-2021-002750f03.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/75c1/9024254/709b4d49aba8/bmjdrc-2021-002750f01.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/75c1/9024254/dc5e2bf7f571/bmjdrc-2021-002750f02.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/75c1/9024254/618012fcedbf/bmjdrc-2021-002750f03.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/75c1/9024254/709b4d49aba8/bmjdrc-2021-002750f01.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/75c1/9024254/dc5e2bf7f571/bmjdrc-2021-002750f02.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/75c1/9024254/618012fcedbf/bmjdrc-2021-002750f03.jpg

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