Endocrine Abstracts

Background: The EarLy Surveillance for Autoimmune diabetes (ELSA) study is screening 20,000 children in the UK aged 3-13 years for type 1 diabetes through measurement of islet autoantibodies. Screening aims to prevent diabetic ketoacidosis at clinical onset of disease, reducing mortality, and identifies the population who could benefit from prevention trials. The ELSA-1 study aimed to explore the perspectives of parents and stakeholders on the relative benefits and limitations of type 1 diabetes screening.

Methods: Qualitative interviews were conducted with parents and stakeholders. Stakeholders included general practitioners, paediatricians, adult diabetes consultants, allied health care professionals, policymakers, and other non-healthcare setting stakeholders. Thematic analysis was undertaken using N-Vivo software to help identify themes.

Results: Sixty interviews were conducted, including 33 family interviews (F) (38 parents and 14 children) and 27 stakeholder interviews. Overall, parents were supportive of screening (n=33/36). Parents cited the following benefits of screening; 1) better prepared for the future, 2) prevent emergency presentation at diagnosis and 3) monitoring follow-up to track progression. Concerns included the burden of ‘living with risk’ and harms of screening older children. There was emphasis on the education and support needed for families with children at-risk. The lack of preventative treatment negated the benefits of screening for a third of stakeholders. The major concern was around managing children at-risk within current NHS system pressures. Consensus guidelines for a monitoring programme were needed, including recommendations for management in primary and secondary care. Appropriate psychological support was also important for families with a child at-risk. Overall, screening stakeholders agreed screening was an important area of research.

Conclusion: ELSA-1 provides the first qualitative interview data in the UK to show that parents are supportive of screening and stakeholders recognise the importance of screening research. Barriers raised in ELSA-1 will be addressed through co-production workshops.