Clinical presentation of young persons with epilepsy who have not transitioned to adult health care systems: A single-site retrospective cohort

•Transition to adult health care was not discussed in the majority of patients.•Most YPE who were not transitioned after 18 years of age were clinically stable.•Most YPE who did not transition had psychiatric and cognitive diagnoses.•It is important to have a transition program for YPE. We aimed to determine the demographics and clinical presentation of young persons with epilepsy (YPE) 18-years and older who have not transitioned to adult health care systems (AHCS) and to investigate the number of neurology-related hospital encounters in this population before and after attaining adulthood. We conducted a single-site retrospective cohort study at Dayton Children’s Hospital (DCH) between 12/01/2021 and 5/31/2022. We included epilepsy patients 18-years and older. Patient demographics, insurance, number of hospitalizations and Emergency Department (ED) visits before and after 18 years of age, clinical presentation, and comorbidities were collected. 251 patient charts were reviewed. The median age was 20.9 years. The most common comorbidities were intellectual disability (36 %) and psychiatric illnesses (59 %). The majority had generalized epilepsy (52 %) and tonic-clonic seizures (56 %). 58 % of the patients had infrequent seizures in the past year. Documentation of transition to AHCS discussion occurred in only 3 % of patients before age 18 compared to 35 % of patients after age 18. There was a decrease in 30 % for ED visits and 15 % for neurology related hospitalizations after the age of 18. YPE 18-years of age and older who were managed by a pediatric neurologist at DCH had significant co-morbidities. However, they were clinically stable and rarely required admission to the hospital. Most of them did not have documentation about transition discussions. At DCH, YPE who have not transitioned to AHCS are clinically stable and well managed.