Transition of care from pediatric to adult age in persons with Down Syndrome: a comprehensive evaluation via the InterRAI suite of mental health instruments

Abstract Background The transition from pediatric to adult healthcare is a critical phase for persons with Down syndrome (DS). The InterRAI Child and Youth Mental Health – Developmental Disabilities (ChYMH-DD) and the InterRAI Intellectual Disability (ID) are validated tools for pediatric and adult populations, respectively. Aim this study aimed to facilitate more coordinated care planning and a consistent understanding of functioning across developmental stages of persons with Down syndrome. Methods This study included 186 participants (aged 5–35 years) with a DS diagnosis. Each participant was assessed using the age-appropriate InterRAI instrument for individuals with intellectual and developmental disabilities. Results The transition to adulthood is associated with an increased complexity of mood, behaviour and symptom burden, as well as a decline in engagement with preventive healthcare after childhood. Conclusion This proof-of-concept study demonstrated the feasibility of applying InterRAI multidimensional assessment instruments across the transition from pediatric to adult care in individuals with DS. The observed patterns—gains in autonomy and communication alongside increasing behavioral, emotional, and medical challenges—underscore the need for structured, lifespan-oriented approaches to care.