Transitioning Ambulatory Medicine from Pediatrics to Adult Care for Patients with Epilepsy and Intellectual Disability

Abstract

Abstract Consensus statements and clinical reports exist to guide the transition of youth from pediatric to adult healthcare services. Across the range of youth with no chronic health conditions to those with the most complex disabilities, the standards of practice continue to vary broadly across the country and internationally. Youth and young adults with combined conditions of epilepsy with intellectual disability are a small subset of the total population of young adults who share common needs. These include a system of supports that supplement each person's limitations in autonomy and self-management. Caregivers play significant roles in their lives, whether they are family members or paid direct service providers. Medical decision making and treatment adherence require specific adaptations for patients whose independence due to disability is unlikely. Key issues related to tuberous sclerosis complex, neurofibromatosis, and Rett and Sturge–Weber syndromes will be highlighted.