Evaluating the documentation of the transition of care process for adolescents with epilepsy: Insights from a pediatric neurology clinic

Objectives: To evaluate the extent and content of transition of care (TOC) documentation in a pediatric neurology clinic, specifically evaluating adherence to the eight common principles established by the Child Neurology Foundation (CNF). Methods: A retrospective chart review was conducted of patients 16-21 years of age seen in a pediatric neurology clinic between February-March 2024. Demographics and clinical data, including TOC documentation elements, were extracted and analyzed. Documentation practices were assessed based on the CNF-TOC principles and compared across sex and presence of intellectual disability (ID). Results: The study included 193 patients: 54 % female and 58 % aged 16-17 years. Individual TOC elements were documented in 0-21 % of cases. Patients with ID had a higher number of antiseizure medications trialed (median:2 [IQR:2-4] vs. 2 [IQR:1-3], p = 0.006), were seen later in pediatric neurology follow-up (median age: 18 [IQR:17-19] vs. 17 [IQR:16-18], p < 0.001), and had earlier seizure onset (median age: 9 [IQR:6-14] vs. 13 [IQR:9-15], p = 0.012). Documentation of anticipated living situation was less in patients with ID (1 % vs. 10 %, p = 0.034), whereas documentation of guardianship prior to age 18 was higher among those with ID (16 % vs. 1 %, p = 0.034). Conclusions: Despite the recognized importance of TOC, most documentation elements including transition readiness, anticipated barriers, and referral plans were present in only 0-21 % of records. These gaps were evident across both ID and non-ID groups, underscoring the need for systematic approaches to TOC documentation to support effective care transitions for adolescents with epilepsy.