Epilepsy in emerging adulthood: Clinical, psychosocial, and surgical challenges

Emerging adulthood (EAs; ages 19-29 years) is a unique developmental stage marked by major psychological, social, and occupational transitions. We sought to characterize the clinical, psychosocial, and surgical features of epilepsy in emerging adulthood, considering both current age and age at epilepsy onset.

We conducted cross-sectional analyses in two cohorts, an adult epilepsy registry in Calgary, Canada (single tertiary center; first visits 2007-2024), and a multi-center epilepsy surgery satisfaction cohort recruited from three Canadian centers and Gothenburg, Sweden. Age categories were <19, 19-29, and >29 years. Outcomes included seizure freedom, anti-seizure medications, substance use, patient-reported outcomes measures, and surgical characteristics (procedure type, wait times, seizure and psychosocial outcomes, and satisfaction).

Of 7439 registry patients, 1724 (23%) were EAs and 1252 had EA-onset epilepsy. Compared with other ages, EAs had lower 1-year seizure freedom and higher depression, anxiety, disability, and substance use (all p's < .001). EA-onset epilepsy showed similar psychosocial burden, especially for anxiety and substance use. In 240 epilepsy surgery patients (69 EAs), EAs were less likely to undergo selective amygdalohippocampectomy (odds ratio [OR] .17, 95% confidence interval [CI] .03-.94) and had higher rates of permanent complications (OR 6.01, 95% CI 1.45-24.94). EA also spent a greater proportion of life waiting for epilepsy surgery and reported lower post-operative psychosocial satisfaction despite a seizure-freedom rate similar to that for other ages.

Epilepsy during emerging adulthood is associated with elevated psychosocial morbidity and less seizure freedom, whereas EAs undergoing epilepsy surgery have a distinct case profile with comparable seizure freedom, more complications, and lower post-operative psychosocial satisfaction. These findings highlight the distinctive impact of epilepsy during this developmental stage and underscore the need for targeted transitional care, mental-health support, and timely surgical evaluation. Longitudinal studies are warranted to elucidate causal mechanisms and inform targeted interventions.