BSPED2023 Oral Communications Oral Communications 9 (9 abstracts)
Screening for paediatric type 1 diabetes – A qualitative study of parents and stakeholders
Naga Sai Manas Setti 1 , Lauren Quinn 2 , Thomas Horgan 1 , Renuka Dias 3 , Joana Garstang 4 , David Shukla 5 , Sheila Greenfield 6 , Alex Richter 7 & Parth Narendran 2,8
1College of medical and dental sciences, University of Birmingham, Birmingham, United Kingdom. 2Institute of Immunology and
Immunotherapy, University of Birmingham, Birmingham, United Kingdom. 3Department of Diabetes, Birmingham Children’s Hospital, Birmingham, United Kingdom. 4Birmingham Community Healthcare Trust, Birmingham, United Kingdom. 5Clinical Research Lead for Primary Care (West Midlands), National Institute for Health and Care Research; Clinical Research Fellow, Institute of Applied Health Research, University of Birmingham, Birmingham, United Kingdom. 6Institute of Applied Heath Research, University of Birmingham, Birmingham, United Kingdom. 7Head of Clinical Immunology Service, University of Birmingham, Birmingham, United Kingdom. 8Department of Diabetes, University Hospitals of Birmingham, Birmingham, United Kingdom
Objective: The EarLy Surveillance for Autoimmune diabetes (ELSA) study is screening 20,000 children aged 3-13 years for type 1 diabetes through measurement of islet autoantibodies. Screening aims to prevent diabetic ketoacidosis at clinical onset of disease 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 screening in the UK.
Methods: Semi-structured interviews were conducted with parents and stakeholders. The interviews were audio-recorded and transcribed. Interviews were conducted until data saturation was met and thematic analysis was undertaken using N-Vivo software to identify themes.
Results: Sixty interviews were conducted, including 33 family interviews (F) (36 parents and 14 children) and 27 stakeholder interviews (S) (6 general practitioners, 4 paediatricians and 6 stakeholders from non-healthcare settings). 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.
Conclusions: 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.
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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