Factors influencing transition from paediatric to adult health care for young people with intellectual disability: A systematic scoping review

Background Young people with intellectual disability often face sub-optimal transitions from paediatric to adult health care. These transitions are often poorly planned and managed, resulting in delayed access to services and adverse outcomes. No synthesis exists on the factors influencing this process. This scoping review examines the nature and extent of evidence on factors affecting the transition to adult health care for young people with intellectual disability. Methods We searched Medline, Embase, CINAHL, and Scopus to identify original research articles published between 2015 and 11 April 2025, using terms ‘intellectual disability’, ‘young people’, and ‘health care transition’. Two reviewers independently screened full-texts, and 50% of included publications had data extracted by two independent reviewers. Data were coded and synthesised using a socio-ecological model across five levels – individual, interpersonal, organisational, community, and policy. Results Of 15,015 publications identified, 28 met our inclusion criteria, all from eight high-income countries, mainly the United States. Most publications reported the perspectives of carers, health care providers, or both. Factors were identified at each socio-ecological level, most often at the organisational level. Commonly reported factors included dedicated transition roles and pathways, the availability and adaptability of adult health care services, and the knowledge and skills of health care providers. Conclusion Our review highlights the predominance of organisational-level influences, the limited inclusion of young people’s perspectives, and the lack of evidence on community- and policy-level factors. Future research should address these evidence needs using participatory approaches and broaden the geographic scope beyond high-income settings.