Transition of care for adolescents and young adults with neurodevelopmental disorders

The increasing prevalence of neurodevelopmental disorders (NDDs) in adolescents and adults in recent decades is changing the paradigms of care provision across specialties, including pediatric and adult primary care and specialty services such as neurology. Transition into adulthood and transfer to adult care providers remains an underdeveloped area of care and research.

The transition process requires significant coordination of care between the family and multiple medical and nonmedical providers as well as community entities. This articulation occurs at times integrated into the continuity of care within certain specialty clinics (i.e. transition programs). There are often additional layers of complexity with NDDs where there are multiple comorbidities, that require synchronous care under transition clinics, addressing medical and psychosocial, educational, vocational, and financial issues (among others). The significant complexity is often compounded with individual and family resistance to change, emotional distress, and feelings of societal disconnect resulting in suboptimal care.

There are emerging models to address transition and transfer of care into adulthood for individuals with NDDs. However, given the challenges and potential points for disenfranchisement, additional research into uniform models that adapt to condition complexity, local and regional resources, are necessary.