Lauren Marie Quinn

Early screening for type 1 diabetes (T1D) is receiving increasing attention as presymptomatic screening initiatives and disease‐modifying therapies continue to expand. However, the perspectives of professional stakeholders, who play a pivotal role in implementation, patient engagement, and health system preparedness, have not been systematically synthesised. We conducted a systematic review to examine professional views on paediatric early T1D screening. Following PRISMA guidelines, six databases (Medline, Embase, Scopus, CINAHL, PsycINFO, ASSIA) and grey literature were searched through January 2026. Twelve studies met the inclusion criteria, predominantly involving paediatricians and diabetes specialists; nurses, genetic counsellors, policymakers, and other healthcare professionals were represented in few studies. Methodological appraisal using the Mixed Methods Appraisal Tool (MMAT) identified recurring limitations in sample representativeness and potential nonresponse bias. Given the heterogeneity and primarily descriptive nature of the study design and outcomes, findings were synthesised narratively. Professional perspectives varied according to the population targeted, professional group studied, screening scenario, and the implementation context. Where directly compared, support was greater for at‐risk than for general‐population screening. Reported benefits included diabetic ketoacidosis (DKA) prevention, earlier clinical engagement, and improved preparedness for families. However, concerns persisted regarding psychosocial burden, workforce capacity, and unclear referral and follow‐up pathways. More favourable evaluations were reported in some structured programmes, although these findings may reflect reliance on existing infrastructures and targeted participant selection. By consolidating previously fragmented evidence, this review identifies recurring clinical, psychosocial, and organisational considerations relevant to paediatric T1D screening. These findings primarily reflect clinical perspectives and indicate conditional rather than uniform support. Further studies should evaluate how standardised pathways, professional training, and integrated psychosocial support affect the feasibility and acceptability of screening across different healthcare contexts.

Aims/hypothesis: Paediatric population screening for type 1 diabetes is emerging internationally. It is critically important to understand the acceptability of screening to inform these initiatives. In this systematic review, we aimed to assess the psychosocial impact, acceptability and ethics of screening for paediatric type 1 diabetes. Methods: We searched MEDLINE, EMBASE, APA PsycInfo, ASSIA, CINAHL, Web of Science, Scopus, and included quantitative, mixed methods and qualitative articles until 25 November 2025. We assessed the emotional, cognitive and behavioural implications, acceptability or ethics of type 1 diabetes early detection for parents and/or children. We used the mixed methods appraisal tool and critical appraisal skills checklists for quality assessment. We performed a mixed methods evidence synthesis, identifying key themes from qualitative data and merging with quantitative data to generate meta-inferences. Results: Seventy articles (12 qualitative, 57 quantitative and one mixed methods) involving 62,244 parents and 6363 children aged <18 years were included. Seven articles (10.0%) met all quality criteria (high quality), 43 (61.4%) met 60–80% of criteria (moderate quality) and 20 (28.6%) met <50% of criteria (low quality). We generated five themes and 19 sub-themes. Identification of early-stage type 1 diabetes generated anxiety, which waned over time but could recur. Overall, parents who opted into an early detection research programme valued knowing their child’s risk and perceived benefits to outweigh harms, although paediatric blood sampling was considered challenging. Research ethics of screening centred on joint decision making according to the child’s age, right to results disclosure and importance of data integrity. We synthesised a large pool of heterogenous studies, reflecting how understanding of early disease has evolved, but likely influencing the acceptability of screening. Conclusions/interpretation: This, the most comprehensive review of the literature to date, demonstrates that despite the emotional, cognitive and behavioural implications, thus far, screening and early detection of paediatric type 1 diabetes appears to be acceptable to parents/guardians who take part but critical evidence gaps remain. Trial registration: PROSPERO registration no. CRD42024566937 Funding: EDENT1FI (grant no. 101132379)

Aims: Research and policy initiatives for type 1 diabetes (T1D) across European countries demonstrate an emergent, critical shift towards universal paediatric screening. National adaptations of screening, however, remain under‐researched. The current study, as part of the EU‐funded EDENT1FI programme, aimed to examine the psychosocial impact and acceptability of screening according to local contexts and regions. Methods: The EDENT1FI screening research programme includes 27 partners involved in implementing screening across eight European countries—four countries already implementing national or local research screening programmes and four countries that are new adopters. The study consists of four sub‐studies with assessments performed at five timepoints, from screening baseline to insulin‐requiring T1D: (1) we examine the screening‐specific psychological impact on families using a novel questionnaire for parents of screened children; (2) we further measure the psychological wellbeing of parents by administering validated questionnaires; (3) we explore parental acceptability through semi‐structured interviews and (4) we explore professional stakeholder acceptability via semi‐structured interviews. Data analysis will integrate questionnaire responses and thematic analysis for the interviews. Results: Findings should provide a deeper understanding of the psychosocial aspects of universal paediatric screening measured longitudinally. The experience of implementation context across countries will be harmonised with the attitudes towards and practices of screening to inform best practice for scaling up universal screening. Conclusions: The study will provide essential insights into how best a general population screening program for T1D can be integrated into existing European health systems.

Background: Islet‐specific autoantibodies predate and predict the onset of type 1 diabetes and can be used to screen for presymptomatic disease. Dried blood spots (DBS) offer a convenient and reliable method for community‐based capillary sampling requiring low blood volumes compared to venous collection. We aimed to verify the use of DBS for detecting autoantibodies by the ElisaRSR (3‐screen) multiplex assay compared to venous sampling and also explore the acceptability of DBS sampling. Methods: Paired serum and DBS samples were collected from healthy controls (HC) and individuals with type 1 diabetes on insulin. Validation and verification of a 3‐screen Islet cell autoantibody (IA‐2A, GADA and ZnT8A) ELISA assay was undertaken for both matrices and compared. Perceived acceptability of DBS testing was explored via semi‐structured interviews with parents and professional stakeholders. Results: Temporally paired serum and DBS samples were collected for 101 individuals with type 1 diabetes (aged 7–73 years) and 22 HC (aged 18–60 years). Performance characteristics were similar for serum and DBS; sensitivity for serum was 86% compared to 89% for DBS and a specificity of 97% for serum compared to 100% for DBS. Parents ( n = 38) and stakeholders ( n = 25) thought DBS testing offered a minimally invasive, convenient screening test. Parents emphasised choice of screening location, including home and community settings. Conclusions: DBS sampling can be used as an alternative to serum for use with the 3‐screen assay for general population type 1 diabetes autoantibody screening. DBS sampling appears acceptable to parents and stakeholders.

Aim: The EarLy Surveillance for Autoimmune (ELSA) study aims to explore the feasibility and acceptability of UK paediatric general population screening for type 1 diabetes.Methods: We aim to screen 20,000 children aged 3–13 years for islet‐specific autoantibodies through dried blood spot sample collection at home, hospital or community settings. Children with two or more autoantibodies are offered metabolic staging via oral glucose challenge testing. Feasibility assessments will compare recruitment modalities and uptake according to demographic factors (age, gender, ethnicity, level of deprivation and family history of diabetes) to determine optimal approaches for general population screening. The study is powered to identify 60 children (0.3%) with type 1 diabetes (stage 1–3). Parents are invited to qualitative interviews following ELSA completion (child screened negative or positive, single autoantibody or multiple, stage 1–3) to share their screening experience, strengths of the programme and any areas for improvement (acceptability assessments). Parents who decline screening or withdraw from participation are invited to interview to explore any concerns. Finally, we will interview professional stakeholders delivering the ELSA study to explore barriers and facilitators to implementation.Conclusion: Early detection of type 1 diabetes allows insulin treatment to be started sooner, avoids diagnosis as an emergency, gives families time to prepare and the opportunity to benefit from future prevention trials and treatments. ELSA will provide essential feasibility and acceptability assessments for UK general population screening to inform a future national screening programme for paediatric type 1 diabetes.

Introduction We describe the identification and management of general population screen-detected type 1 diabetes (T1D) and share learnings for best practice. Research design and methods Children diagnosed with T1D through a general population screening initiative, the EarLy Surveillance for Autoimmune diabetes (ELSA) study, were reviewed and described. Parents provided written, informed consent for inclusion in the case series. Results 14 children with insulin requiring (stage 3) T1D are described. These cases offer unique insights into the features of screen-detected T1D. T1D is identified sooner through screening programs, characterized by absent/short symptom duration, median presenting glycated hemoglobin 6.6% (49 mmol/mol) and insulin requirementsConclusions There are three main learnings from this case series. First, T1D identified through screening is at an earlier stage of its natural history and requires personalized insulin regimens with lower total daily insulin doses. Second, single autoantibody seropositivity can rapidly progress to stage 3. Finally, insulin requirement can manifest at any stage of the T1D screening pathway, and therefore early education around symptom recognition is essential for families participating in screening programs.

Introduction. With reliable tests and preventative treatments now available the United Kingdom has introduced a prototype population-based paediatric (ages 313) screening programme for type 1 diabetes (T1D). To aid its ethical and sustainable implementation this work explores parental views around the concept of this programme to determine how their involvement might be encouraged and supported. Research Design and Methods. Qualitative interviews were undertaken with 38 parents and the data were analysed using a purposely developed Burden of Screening framework, which presented the data within three domains describing the various elements of screening participation; pre-screening tasks designated to participants; factors influencing engagement with screening; and consequences of screening participation. Results. Regarding pre-screening tasks designated to participants, the importance of clear communication about the condition were apparent with parents expressing uncertainty of the benefits of screening against the potential anxiety engendered. In factors influencing their engagement with screening participants described their preference for less invasive testing techniques, the reassurance of structured support from healthcare professionals inherent within the programme, and the potential benefit of peer support. Regarding the consequences of screening participation parents described how a positive result might lead to overly protective behaviours, and anxiety from watching and waiting for the onset of symptomatic T1D. Conclusions. The benefits of T1D screening need to be clearly communicated to facilitate uptake. To this end the use of decision-support tools and better targeted educational materials should be explored. Post-testing, parents expressed preferences for peer support and access to psychological counselling.

Background Children with pre-symptomatic type 1 diabetes can be identified through testing for circulating islet autoantibodies. Identifying children at risk reduces the rates of diabetic ketoacidosis at presentation and allows participation in clinical trials for type 1 diabetes prevention. Aim The Early Surveillance for Autoimmune diabetes study (ELSA) is exploring feasibility and acceptability of UK paediatric general population screening. Method The ELSA study runs from July 2022 to August 2024 and aims to recruit 20 000 children aged 3–13 years. ELSA is screening for islet autoantibodies via dried blood spot (DBS) and subsequent staging via oral glucose tolerance testing. ELSA is exploring feasibility and acceptability of UK paediatric general population screening. Results At the time of writing, 2582 children have been consented to the study. In the preliminary beta version (July–October 2022), there were 59 expressions of interest, 37 children consented (63%) and 22 kits returned (59%). Of the consented children, 17 families were invited and 8 were passive recruits through friends/family. Reasons for not returning the kit included issue with home-testing (n=1) and concern about the lancet (n=1). One of the DBS kits screened positive (4.5%), but the serum confirmation did not detect autoantibodies. The study launched nationally via social media on 14 November 2022 (World Diabetes Day) leading to a surge in expressions of interest (n=3070). Of these, 2141 children were consented within 36 hours. Conclusion Social media has been an effective route to recruitment. Community outreach to schools and general practices will be implemented as this study evolves, to explore optimal recruitment modalities and acceptability.