Leah J. Blank

Adults older than age 55 years have the highest incidence rate and are the fastest-growing population among people with epilepsy. The aim of this study was to characterize the etiologies of new-onset seizures in older adults and to examine how seizure etiology varies across demographic groups. We used data from 7 US epilepsy centers from 2021 to 2025 and compared findings with those of previous population-based studies, providing an updated view and highlighting opportunities for prevention and improved risk stratification. We retrospectively reviewed medical charts of 2,052 patients aged ≥55 years at the time of a first seizure, who were evaluated at 7 epilepsy centers between 2021 and 2025. We categorized seizures by etiology as follows: ischemic stroke, hemorrhagic stroke, tumor, neurodegeneration, provoked seizures, traumatic brain injury, and unknown. We examined differences in etiology by demographic strata (age, sex, race, and primary language) using chi-square tests, Kruskal-Wallis tests, analysis of variance, and Cuzick tests. The most frequent seizure etiologies among older adults were unknown (29.9%), ischemic stroke (15.4%), and provoked seizures (14.9%). Neurodegenerative disease was the etiology for 5.3% of cases overall but increased in prevalence with age, accounting for 18.5% among patients aged 85-89 years. Seizure etiologies also differed by sex and race. Men more commonly had seizures caused by cerebrovascular disease and traumatic brain injury, while women more commonly had seizures due to neurodegenerative disease. Black patients had higher proportions of ischemic stroke and neurodegenerative disease, while unexplained epilepsy was more common among White patients. The causes of late-onset seizures vary based on age, sex, and race. Nearly one-third of cases of epilepsy in older adults remain unexplained despite advances in imaging techniques, underscoring the need for further research on the mechanisms and health implications of late-onset unexplained epilepsy. Improved prevention of cerebrovascular disease and optimized management of provoked seizures may reduce the growing burden of epilepsy in older adults.

Discussing sudden unexpected death in epilepsy (SUDEP) is difficult and sensitive for health care providers (HCPs), people with epilepsy (PwE), and caregivers. This scoping review examines the literature on SUDEP communication, focusing on need, timing, content, methods, facilitators, barriers, and outcomes. We performed a thematic analysis to identify themes that summarized the perceptions of the epilepsy community regarding key elements of SUDEP communication. We identified 66 articles that met inclusion criteria. These studies included more than 5300 HCPs and 40 000 PwE and caregivers. Caregivers and PwE felt that all PwE should receive SUDEP information. However, the majority of HCPs did not discuss SUDEP. The preferred source of information was an epilepsy specialist, but PwE also valued other HCPs with whom they have a trusted relationship. There was general agreement SUDEP should be discussed at diagnosis, but limited HCP time and training were barriers. Caregivers and PwE overwhelmingly wanted information about SUDEP. Greater education and training about SUDEP for HCP may facilitate communication. Fear of causing distress was the primary barrier to SUDEP communication. However, these concerns, although valid, were often exaggerated. Even in studies that found negative emotional responses to learning about SUDEP, participants regularly reported that the benefits of knowing outweighed the short‐term consequences.

Objective: Late‐onset unexplained epilepsy (LoUE), defined as epilepsy onset after age 55 without an obvious cause, is an important risk factor for dementia. Studies have shown that 10%–25% of individuals with LoUE develop dementia within 3–4 years following their first seizure. However, the mechanisms underlying progression from LoUE to dementia remain poorly understood. The goals of the ELUCID study are to identify risk factors associated with the development of cognitive decline and dementia in LoUE and to develop tools to identify patients at a high risk for these outcomes and thereby establish a foundation for dementia prevention strategies in this population. Methods and Analysis: ELUCID is a multi‐center prospective longitudinal observational study that will enroll 600 participants aged 55 or older with LoUE across seven U.S. medical centers. Participants will undergo a baseline evaluation that includes a detailed clinical history, cognitive testing, brain MRI, overnight scalp EEG, and blood biomarkers. Participants will be followed at 6‐month intervals for up to 5 years, to record cognitive and neurological changes, with the primary outcomes of interest being the development of mild cognitive impairment and/or dementia. This study aims to establish LoUE disease subtypes based on biomarkers, cognitive trajectories, and imaging features and to develop a risk stratification tool for predicting cognitive decline and dementia in patients presenting with LoUE. Ethics and Dissemination: ELUCID has obtained IRB approval (no. 2023P001566, August 2023), with the Mass General Brigham IRB serving as the single IRB of record. All de‐identified study data will be made publicly available on completion of the study. Plain Language Summary: The ELUCID study is a research project involving several medical centers across the U.S. It will focus on older adults who have recently developed seizures without a clear cause. Participants undergo an initial evaluation that includes questions about their medical history, a brain MRI , an overnight scalp EEG (brain wave study), and a blood draw. They will be followed over time with health questionnaires and yearly tests of memory and thinking. The purpose of the study is to learn what factors increase the risk of dementia in this population and to develop tools to predict which individuals are at the highest risk.

Geographic location significantly affects health care access. This descriptive study quantifies the supply of epilepsy-certified physicians across the United States. We performed a cross-sectional study using data from the American Board of Psychiatry and Neurology's verifyCERT system to identify active epilepsy-certified physicians as of October 24, 2024. Physician locations were matched to county-level Federal Information Processing Standard codes and assigned Area Deprivation Index (ADI) scores and Urban Influence Codes. We aggregated physicians at regional, state, and county levels and calculated patient-to-physician ratios using state-level estimates of active epilepsy cases. Of 2,284 physicians with epilepsy certification, 2,169 were active. There were zero epilepsy-certified physicians in Montana, and only 1 in each of Arizona, Vermont, and Wyoming. California, New York, and Texas had the highest physician supply. The South had the highest number of epilepsy cases and highest patient-to-physician ratios. Most epilepsy physicians were in metropolitan areas, but many of these counties lacked any epilepsy-certified physicians. Counties with more physicians had lower ADI scores, reflecting worse access to care in areas with higher levels of socioeconomic deprivation. Our study highlights geographic heterogeneity in supply of epilepsy-certified physicians. The distribution of epilepsy subspecialists should inform interventions that improve quality of care.

Objective: This study aims to better characterize the long‐term neurological quality of life (QOL) outcomes (using the Neuro‐QOL scale) in survivors of new onset refractory status epilepticus (NORSE), including its subtype febrile infection‐related epilepsy syndrome (FIRES), and provide guidance for psychological and social support strategies. Methods: Utilizing data from a multicenter prospective study of NORSE/FIRES led by Yale University, we enrolled patients who completed the validated, patient‐reported Neuro‐QOL scale at least once at 3–6 months ( n = 37), 12 months ( n = 29), 24 months ( n = 23), or ≥36 months ( n = 9) following discharge. The Neuro‐QOL scale assesses physical, mental, and social health in patients with neurological disorders. QOL impairment (QOL‐I) scores were calculated, with higher scores indicating greater impairment. T ‐scores enabled comparisons with reference populations. Results: In adults, median QOL‐I improved from 44.1% at 3–6 months to 37.6% at 36+ months. Paired analysis showed significant improvement in QOL‐I between 3–6 and 24 months ( p = .016), with specific improvements in communication, satisfaction with social roles, fatigue, and mobility. Greater improvement was also observed for participation in social roles (5.5‐point T ‐score gain) compared to the reference population, suggesting meaningful change. A gradual improvement in overall QOL‐I scores was also observed in pediatric participants, despite a modest sample size ( n = 5 with data at 3–6 and 12 months). Measures of fatigue and anxiety persisted in adults, and cognitive difficulties persisted in both adults and children. In adults, longer status epilepticus duration and intensive care unit stay were associated with poorer QOL. Additionally, a higher number of antiseizure medications was associated with more depression, cognitive impairments, and perceived stigma. Significance: These findings highlight the potential for recovery following an acute episode of NORSE, although many patients continue to face challenges requiring ongoing support, and the clinical meaning of the reported QOL improvement remains unclear. Furthermore, the findings underscore the importance of strategic multidisciplinary support systems in the years following discharge.