Transfer to Adult Care in Epilepsy: A Nationwide Population-Based Register Study

Adolescence is a crucial life period, which is extra challenging for young persons with epilepsy (YPE), coinciding with transfer from pediatric to adult care. Knowledge on medical and socioeconomic effects of this care transfer is scarce. The aim of this study was to determine medical and socioeconomic outcomes after transfer to adult care in YPE and to identify risk factors of poor outcome.

We conducted a population-based retrospective follow-up study of all individuals in Sweden with epilepsy during their 18th year of life over 5 consecutive years. The data were extracted from 5 comprehensive national registries for 2013-2021.

A total of 2,491 adolescents with epilepsy were identified (prevalence 0.46%). Mortality was 0.7% with a standardized mortality rate of 13 compared with the total adolescent population. In patients with an epilepsy-related specialist care contact before the age of 18 years (n = 1719), 22% did not have a planned follow-up visit in specialist care in the 2 following years. The proportion of adolescents who consulted acute medical care for epilepsy increased from 3% to 7% after age 18. Loss to follow-up and acute medical care visits were positively correlated with socioeconomic factors such as lower income, foreign background, and geographic region.

A gap in care exists for adolescents with epilepsy after transfer to adult medical care with an increase in epilepsy-related emergency care visits and a decrease in planned specialist care follow-up. A poor epilepsy care outcome is associated with lower economic status, foreign background, and more remote geographic region. The pattern of health care consumption suggests that socioeconomic and geographic factors augment known difficulties in transition to adult epilepsy care and highlights that interventions are needed to ensure optimal outcomes.