The medical, legal, social and educational status of youth with special health care needs in a pediatric and adolescent medicine clinic

Studies have shown that the lack of a structured transitioning of adolescents to adult care has led to adverse consequences, particularly affecting youth with special health care needs (YSHCN). There are low rates of transition planning in this vulnerable group leading to medical complications, increased use of emergency rooms and gaps in care. We examined what parents of YSHCN have been taught and prepared for regarding their child's medical issues, educational support, social support and legal processes in an effort to ensure transition readiness. A retrospective chart review was performed on patients (14–24 y/o) with one or more of the following diagnoses: autism, developmental delay, intellectual disability, epilepsy or seizure disorder, cerebral palsy, muscular dystrophy, or down syndrome, who presented to a general pediatric or adolescent medicine hospital-based clinic for an annual physical, follow up visit or form renewal visit. Data regarding demographics, medical history, participation in social programs, discussions of reasons to see a doctor or escalate care to the emergency department, established health care coordinators, identification of an adult doctor to transition care to and discussion of guardianship were recorded from eligible charts. Data from 122 medical charts (general pediatrics, 70; adolescent medicine, 52) were included with 70 patients (57%) being cared for by a general provider and 52 patients (43%) being cared for by a transition-focused provider. The median patient age was 18, with 70% of patients (n = 85) being between the ages of 14 to 17 y/o and 30% of patients (n = 37) being in the transition age range of 18–24 y/o. A significantly greater percentage of patients in the 18–24 y/o age group (35%) than the 14–17 y/o age group (9%) had identified an adult medical provider to transition care. A significantly greater percentage of patients in the 18–24 y/o age group (54%) than the 14–17 y/o age group (29%) had discussed obtaining guardianship. A significantly greater percentage of patients with transition-focused providers (46%) than patients with a general provider (14%) had an established health care coordinator. A significantly greater percentage of patients with transition-focused providers (35%) than patients with a general provider (4%) had identified an adult medical provider to transition to for adult care. Outcomes showed that being in the transition age group (18–24 y/o) and having a transition-focused provider had a positive influence on discussions about the legal and social aspects of care for YSHCN. This emphasizes the importance of having transition focused providers in both general pediatric and adolescent medicine offices, as well as, incorporation of structured transition readiness protocols to ensure a safe transition.