About 1.5 million community-dwelling US adults with active epilepsy reported uncontrolled seizures in the past 12 months, and seizure control varied by annual family income-National Health Interview Survey, United States 2021 and 2022.

Uncontrolled seizures among people with epilepsy increase risk of adverse health and social outcomes including increased risk of death. Previous population-based studies have reported suboptimal seizure control and disparities in seizure control among U.S. adults with active epilepsy (self-reported doctor-diagnosed epilepsy and taking anti-seizure medicine or with ≥ 1 seizures in the past 12 months) by annual family income. This brief is based upon data from the 2021 and 2022 National Health Interview Survey (NHIS) to provide updated national estimates of the percentages of adults with active epilepsy with and without seizure control (0 seizures in past 12 months) vs. ≥ 1) by anti-seizure medication use and by annual family income. Annual family income was operationalized with NHIS poverty-income ratio (PIR) categories (i.e., total family income divided by the US Census Bureau poverty threshold given the family's size and number of children): PIR < 1.0, 1.0 ≤ PIR < 2.0; PIR ≥ 2.0. Among the 1.1 % of US adults with active epilepsy in 2021/2022 (estimated population about 2.9 million), 49.2 % (∼1.4 million) were taking antiseizure medication and reported no seizures (seizure control), 36.2 % (∼1.1 million) were taking antiseizure medication and reported ≥ 1 seizures (uncontrolled seizures), and 14.7 % (∼400,000) were not taking antiseizure medication and had ≥ 1 seizures (uncontrolled seizures). The prevalence of seizure control among those with active epilepsy varied substantially by annual family income, with a larger percentage of adults with PIR ≥ 2.0 reporting seizure control compared with those with PIR < 1.0. Opportunities for intervention include improving provider awareness of epilepsy treatment guidelines, enhancing access and referral to specialty care, providing epilepsy self-management supports, and addressing unmet social needs of people with epilepsy with uncontrolled seizures, especially those at lowest family income levels.

Mortality and mortality disparities among people with epilepsy in the United States, 2011-2021.

Studies on epilepsy mortality in the United States are limited. We used the National Vital Statistics System Multiple Cause of Death data to investigate mortality rates and trends during 2011-2021 for epilepsy (defined by the International Classification of Diseases, 10th Revision, codes G40.0-G40.9) as an underlying, contributing, or any cause of death (i.e., either an underlying or contributing cause) for U.S. residents. We also examined epilepsy as an underlying or contributing cause of death by selected sociodemographic characteristics to assess mortality rate changes and disparities in subpopulations. During 2011-2021, the overall age-standardized mortality rates for epilepsy as an underlying (39 % of all deaths) or contributing (61 % of all deaths) cause of death increased 83.6 % (from 2.9 per million to 6.4 per million population) as underlying cause and 144.1 % (from 3.3 per million to 11.0 per million population) as contributing cause (P < 0.001 for both based on annual percent changes). Compared to 2011-2015, in 2016-2020 mortality rates with epilepsy as an underlying or contributing cause of death were higher overall and in nearly all subgroups. Overall, mortality rates with epilepsy as an underlying or contributing cause of death were higher in older age groups, among males than females, among non-Hispanic Black or non-Hispanic American Indian/Alaska Native persons than non-Hispanic White persons, among those living in the West and Midwest than those living in the Northeast, and in nonmetro counties compared to urban regions. Results identify priority subgroups for intervention to reduce mortality in people with epilepsy and eliminate mortality disparity.