Psychosocial implications, acceptability and ethics of screening for paediatric type 1 diabetes: a systematic review and mixed methods evidence synthesis
Quinn LM., Stanley D., Milano F., Perego G., Randell MJ., Gatti F., Catarinella A., Dettori LB., Sheldon R., Abid M., Ziegler AG., Bonifacio E., Mathieu C., Peakman M., Dunne JL., Hurtado del Pozo C., Vercauteren J., Overbergh L., Bosi E., Di Mattei VE., Barnard K., Lange K., Dias RP., Litchfield I., Greenfield SM., Boardman FK., Boiko O., Narendran P., Agardh D., Amoroso M., Chen S., Besser R., Playle R., Townson J., Hood K., Dayan C., Tree T., Collins K., Hedrick J., Nagallas S., Tewson H., Darrock D., Jackson J., Koralova A., Agiostratidou G., Latres E., Buompensiere MI., Cohen O., Fogh K., Bergholdt R., Van Rampelbergh J., Baccara-Dinet M., Niemoeller E., Coelho R., Ribeiro R., Raposo JF., Jarosz-Chobot P., Karczewski K., Szypowska A., Sebastiani G., Dotta F., Lampasona V., Piemonti L., Zubizarreta N., Gemulla G., Loff A., Hommel A., Berner R., Hyöty H., Laiho JE., Klaebel JH., Antvorskov J., Petersen B., Pociot F., Berka B., Neuman V., Cinek O., Sumnik Z., Torbeyns B., Del Prato S., Moitzi S., Mader J., Pieber T., von dem Berge T., Kordonouri O., Reschke F., Hummel S., Winkler C., Haupt F., Achenbach P., van der Schueren B., Casteels K., Gillard P.
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)