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Journal Article Systematic Review Ahead of print

PubMed: 42065735 DOI: 10.1007/s00125-026-06717-2

Psychosocial implications, acceptability and ethics of screening for paediatric type 1 diabetes: a systematic review and mixed methods evidence synthesis.

Diabetologia

Authors: Lauren M Quinn, David Stanley, Francesca Milano, Gaia Perego, Matthew J Randell, Francesca Gatti, Antonio Catarinella, Lavinia B Dettori, Rocco Sheldon, Muhammad Abid, Anette-Gabriele Ziegler, Ezio Bonifacio, Chantal Mathieu, Mark Peakman, Jessica L Dunne, Carmen Hurtado Del Pozo, Jurgen Vercauteren, Lut Overbergh, Emanuele Bosi, Valentina E Di Mattei, Katharine Barnard, Karin Lange, Renuka P Dias, Ian Litchfield, Sheila M Greenfield, Felicity K Boardman, Olga Boiko, Parth Narendran

Affiliations

  • Institute of Immunology and Immunotherapy, College of Medicine and Health, University of Birmingham, Birmingham, UK.
  • College of Medicine and Health, University of Birmingham, Birmingham, UK.
  • Department of Psychology, University of Milan-Bicocca, Milan, Italy.
  • School of Psychology, Vita Salute San Raffaele University, Milan, Italy.
  • Clinical and Health Psychology Unit, IRCCS San Raffaele Hospital, Milan, Italy.
  • Applied Health Directorate, Warwick Medical School, University of Warwick, Warwick, UK.
  • Institute of Diabetes Research, Helmholtz Munich, and Forschergruppe Diabetes, Klinikum rechts der Isar, Technical University Munich, Munich, Germany.
  • Center for Regenerative Therapies Dresden (CRTD), Faculty of Medicine, Technische Universität Dresden, Dresden, Germany.
  • Laboratory of Clinical and Experimental Endocrinology, Katholieke Universiteit Leuven (KULEUVEN), Leuven, Belgium.
  • Immunology & Inflammation Research Therapeutic Area, Sanofi, MA, USA.
  • Sanofi US, Bridgewater, NJ, USA.
  • Research Department, Breakthrough T1D, New York, NY, USA.
  • Department of Chronic Diseases and Metabolism, KU Leuven, Leuven, Belgium.
  • Diabetes Research Institute, IRCCS San Raffaele Hospital and Vita Salute San Raffaele University, Milan, Italy.
  • Southern Health NHS Foundation Trust, Southampton, UK.
  • Department of Medical Psychology, Hannover Medical School, Hannover, Germany.
  • Department of Applied Health Sciences, College of Medicine and Health, University of Birmingham, Birmingham, UK.
  • Institute of Immunology and Immunotherapy, College of Medicine and Health, University of Birmingham, Birmingham, UK.

Abstract

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).

MeSH

Diabetes Mellitus, Ethics, Diabetes Mellitus, Type 1, Child