Pediatric Epilepsy Mortality Rate Doubled in US Since 1999

Epilepsy-related mortality among US children and adolescents has increased in recent years, including among both sexes, non-Hispanic Black and White youths, and adolescents aged 11 to 19 years, according to a cross-sectional research letter published in JAMA Network Open.

Investigators used CDC Wide-Ranging Online Data for Epidemiologic Research mortality data from 1999 to 2023 for individuals aged 0 to 19 years whose underlying cause of death was epilepsy or status epilepticus, and evaluated trends using joinpoint regression. Analyses were restricted to non-Hispanic Black and non-Hispanic White individuals because other groups had low counts or suppressed estimates.

Overall, 4,472 individuals aged 0 to 19 years died of epilepsy (56% boys), and the age-adjusted mortality rate rose from 0.2 to 0.4 deaths per 100,000 population between 1999 and 2023. After remaining stable from 1999 to 2001, mortality increased by 5.6% per year (95% CI, 3.1%-13.7%) through 2023. Annual increases were 8.5% among non-Hispanic Black individuals from 2008 to 2023, 5.9% among non-Hispanic White individuals from 2001 to 2023, and 5.3% among male individuals throughout the study period. Among female individuals, mortality increased sharply by 15.7% per year from 2018 to 2023.

Mortality among adolescents aged 11 to 19 years increased by 8.6% per year from 2008 to 2023. Among children aged 10 years or younger, mortality was stable overall, although it increased by 4.9% per year from 2001 to 2023 among those aged 2 years or younger. The authors cited sudden unexpected death in epilepsy as one potential explanation for the rise among adolescents.

The authors noted that reliance on death certificates may have underestimated epilepsy-related deaths, that the database lacks patient-level data on comorbidities, and that small numbers of deaths among female individuals may have increased variability in those estimates. They said the findings highlight the need for age-specific strategies to reduce epilepsy-related mortality in children and adolescents.

Source: Shaparin N, Khandaker R, Schwarz J, et al. Epilepsy-related mortality among children and adolescents. JAMA Netw Open. 2026;9(10):e2638537. doi:10.1001/jamanetworkopen.2026.38537