Building a framework for successful transition from pediatric to adult healthcare in Down syndrome

Abstract

Background Adults with Down syndrome (DS) increasingly require structured transition from pediatric to adult healthcare, yet disease-specific guidance remains limited. Methods We reviewed current evidence and combined it with the multidisciplinary clinical experience of the Belgian National Scientific Board for Down Syndrome to identify barriers and propose practical recommendations. Results Transition in DS is challenged by intellectual disability, multimorbidity, fragmented adult care, structural healthcare inequalities, delayed primary care involvement, parental ageing, and poor coordination between medical and social services. We propose a person-centered framework emphasizing early preparation, supported decision-making, multidisciplinary collaboration, early engagement of general practitioners, accessible communication, and integrated medico-social support. Conclusions Disease-specific transition pathways are needed to improve continuity of care, promote autonomy, and reduce health inequalities. Prospective studies should evaluate transition models and include the perspectives of people with DS and their families.