Psychosocial aspects of early detection in type 1 diabetes: Language matters, decision making and support needs

Maartje de Wit; Laura Yvonne Klinker; Belinda Moore; Anna Boggiss; Lucía Feito Allonca; Mariam Asaad; Keely Bebbington; Bryan Cleal; Sasja Huisman; Per Winterdijk; Henk Jan Aanstoot; Christine Fransman; Elizabeth Holmes-Truscott; Norbert Hermanns; Giesje Nefs

doi:10.1111/dme.70308

Psychosocial aspects of early detection in type 1 diabetes: Language matters, decision making and support needs

Diabet Med. 2026 Apr 1:e70308. doi: 10.1111/dme.70308. Online ahead of print.

Authors

Maartje de Wit¹, Laura Yvonne Klinker^{2

3

4}, Belinda Moore⁵, Anna Boggiss^{6

7}, Lucía Feito Allonca⁸, Mariam Asaad⁹, Keely Bebbington^{6

7}, Bryan Cleal¹⁰, Sasja Huisman¹¹, Per Winterdijk¹², Henk Jan Aanstoot¹², Christine Fransman¹², Elizabeth Holmes-Truscott^{13

14}, Norbert Hermanns², Giesje Nefs^{12

15

16

17}

Affiliations

¹ Medical Psychology, Amsterdam Public Health, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, Netherlands.
² Research Institute Diabetes Academy Mergentheim (FIDAM), Bad Mergentheim, Germany.
³ Diabetes Center Mergentheim (DZM), Bad Mergentheim, Germany.
⁴ Department of Clinical Psychology and Psychotherapy, University of Bamberg, Bamberg, Germany.
⁵ Rumbalara Aboriginal Cooperative and Cummeragunja Health and Development Aboriginal Corporation, Health and Wellbeing Clinics, Shepparton, Victoria, Australia.
⁶ Children's Diabetes Centre, The Kids Research Institute Australia, Perth, Western Australia, Australia.
⁷ Centre for Child Health Research, The University of Western Australia, Perth, Western Australia, Australia.
⁸ Harvard Medical School, Center for Primary Care, Boston, USA.
⁹ Florence Nightingale Faculty of Nursing, Midwifery, and Palliative Care, King's College London, London, UK.
¹⁰ Department of Prevention, Health Promotion and Community Care, Copenhagen University Hospital - Steno Diabetes Center Copenhagen, Herlev, Denmark.
¹¹ Department of Internal Medicine, Leiden University Medical Center, Leiden, the Netherlands.
¹² Diabeter, Center for Focused Diabetes Care and Research, Rotterdam, the Netherlands.
¹³ School of Psychology and Institute for Health Transformation, Deakin University, Geelong, Victoria, Australia.
¹⁴ The Australian Centre for Behavioural Research in Diabetes, Diabetes Victoria, Carlton, Victoria, Australia.
¹⁵ Department of Medical Psychology, Radboud University Medical Center, Nijmegen, the Netherlands.
¹⁶ Department of Medical and Clinical Psychology, CoRPS - Center of Research on Psychological Disorders and Somatic Diseases, Tilburg University, Tilburg, the Netherlands.
¹⁷ Diabeter Centrum Amsterdam, Amsterdam, the Netherlands.

PMID: 41923408
DOI: 10.1111/dme.70308

Abstract

Aim: The potential implementation of early type 1 diabetes (T1D) detection pathways, encompassing autoantibody screening and longitudinal monitoring, raises important psychosocial considerations for ethical, person-centred care. This review summarises evidence on the psychosocial impact of early T1D detection, identifying key evidence gaps and recommendations for integrating psychosocial support.

Methods: A semi-structured narrative review was conducted using PubMed-indexed international peer-reviewed literature, complemented by experiential insights from an interdisciplinary authorship team.

Results: Broader Health screening literature emphasises that individuals' values, beliefs about chance, severity and controllability, alongside sociocultural context, shape decision making and coping. Early T1D detection introduces inherent uncertainty regarding timing and clinical progression. Despite a limited evidence base, largely focused on parents and lacking tailored person-reported outcome measures (PROMs), studies suggest a transient increase in negative emotional responses (e.g., anxiety, depressive symptoms, distress). Individual variation appears linked to screening outcome, prior experiences with T1D and tolerance for uncertainty. Effective, stigma-free communication and psychosocial support delivered by family-oriented professionals can facilitate informed, autonomous decision making. Mental health specialists play a key role in developing behaviourally informed protocols for care and communication, training care teams and providing targeted support for families experiencing persistent distress. Community involvement in the design, testing and evaluation of these communication tools, models of care and development of PROMs are essential for acceptability and equity.

Conclusion: Integrating psychological monitoring and care is a critical component of the early T1D detection pathway. Contextually relevant and co-designed information, support strategies and PROMs are needed to help families make informed decisions and navigate uncertainties.

Keywords: psychological aspects; screening; type 1 diabetes.

Publication types

Review