Mortality Associated With Epilepsy in Children and Adolescents

By
Naum Shaparin
Rafi Khandaker
Jan Schwarz
Ali Bordbar Jahantighi
Lorenz Droege
Tina Ramishvili
Constance Rippel
Steven C. Lindo
Itay Tokatly Latzer
Jerry Chao
Ibraheem M. Karaye
October 12, 2026

Jama Network Open

Overview

A US cross-sectional analysis of death records from 1999 through 2023 identified 4,472 epilepsy-related deaths among individuals aged 0 to 19 years. The age-adjusted mortality rate doubled from 0.2 to 0.4 deaths per 100,000, with significant increases in the overall population and in several demographic and age groups.

Background

Epilepsy is a prevalent childhood neurologic disorder associated with seizure-related morbidity, injury, psychiatric comorbidity, impaired neurodevelopment, and premature death. Prior research has focused largely on incidence, treatment outcomes, and quality of life, while long-term trends in epilepsy-related mortality have been less well characterized. This study examined US mortality trends by age, sex, and race and ethnicity from 1999 through 2023. The analysis included only non-Hispanic Black and non-Hispanic White groups because counts or estimates for other groups were insufficient for reliable analysis.

Data Highlights

Measure	Finding
Deaths, 1999–2023	4,472 among US individuals aged 0–19 years; 2,503 (56%) were boys and 2,438 (55%) were among individuals aged 11–19 years.
Overall age-adjusted mortality rate	Rose from 0.2 per 100,000 in 1999 to 0.4 per 100,000 in 2023.
Overall trend	Stable from 1999–2001; increased 5.6% annually (95% CI, 3.1%–13.7%) from 2001–2023.
Non-Hispanic Black individuals	Stable from 1999–2008; increased 8.5% annually (95% CI, 6.2%–19.5%) from 2008–2023.
Non-Hispanic White individuals	Stable from 1999–2001; increased 5.9% annually (95% CI, 4.3%–9.6%) through 2023.
Male individuals	Increased 5.3% annually (95% CI, 3.5%–7.2%) across the study period.
Female individuals	After periods of stability and increase, mortality rose 15.7% annually (95% CI, 9.5%–28.9%) from 2018–2023.
Age-specific trends	Mortality was stable overall among children aged 10 years or younger; it increased 4.9% annually (95% CI, 3.4%–8.7%) among children aged 2 years or younger from 2001–2023. Among adolescents aged 11–19 years, it increased 8.6% annually (95% CI, 5.9%–18.5%) from 2008–2023.

Key Findings

The study used CDC WONDER mortality data and joinpoint regression to assess epilepsy-related deaths among US individuals aged 0–19 years from 1999 through 2023.
There were 4,472 deaths; boys accounted for 56%, and individuals aged 11–19 years accounted for 55%.
Overall mortality was stable from 1999 to 2001 and then increased by 5.6% annually through 2023.
Mortality increased in both analyzed racial and ethnic groups after periods of stability: by 5.9% annually among non-Hispanic White individuals from 2001 and by 8.5% annually among non-Hispanic Black individuals from 2008.
Male mortality increased throughout the study period; female mortality increased sharply by 15.7% annually from 2018 to 2023.
Mortality was generally stable among children aged 10 years or younger, but increased among those aged 2 years or younger from 2001 onward and among adolescents aged 11–19 years from 2008 onward. The authors noted SUDEP as one possible explanation for rising adolescent mortality, while identifying severe early-onset epilepsy syndromes as a possible context for mortality risk in younger children.

Clinical Implications

The study authors identify rising mortality in adolescents and recent increases among children aged 2 years or younger, while noting that mortality trends were less uniform among younger children overall. They discuss SUDEP as one possible explanation for the adolescent pattern and severe early-onset epilepsy syndromes as a possible contributor to risk in very young children; the study does not establish causes of the observed trends.

Conclusion

From 1999 through 2023, epilepsy-related mortality among US individuals aged 0–19 years increased overall, with differing patterns by age, sex, and race and ethnicity. The findings describe population-level trends and do not determine the causes of individual deaths or the observed increases.