American Epilepsy Society/International League Against Epilepsy-North America Joint Task Force for Epilepsy Health Care Disparities in the United States
Numerous factors including social determinants of health, knowledge gaps, economic challenges, workforce limitations, and health system deficiencies are associated with significant disparities in access to health care services and health outcomes for people with epilepsy (PWE). The American Epilepsy Society (AES) and the International League Against Epilepsy—North America (ILAE-NA) established a joint task force to explore and develop recommendations to address health care disparities experienced by PWE. The task force gathered foundational knowledge through meetings, public and patient organization comments and discussions to develop consensus recommendations. We enumerate the recommendations and discuss the rationale behind them to reduce disparities in epilepsy care through comprehensive research, inclusive clinical practices, robust advocacy, and targeted educational initiatives. While our recommendations are focused on the United States, we acknowledge that similar barriers and limitations exist for PWE globally and that these also need to be addressed within their local domains and with attention to unique factors therewithin.
Epilepsy Surgery Education: A Survey of US Epilepsy Fellowship Program Directors
Purpose: To understand the current state of epilepsy surgery education delivered to epilepsy fellows in the United States. Methods: An online survey focused on characteristics of epilepsy surgery education was distributed to all 93 epilepsy fellowship program directors listed on the ACGME website (accessed in May 2022). Programs were stratified per the number of fellows currently enrolled: 0 to 3 (group A) and ≥4 (group B). Results: Forty-one of 93 (44%) epilepsy fellowship programs were included in the study. The average number of resective surgeries, ablations, or corpus callosotomies per year was mostly 0 to 30 (54%) in group A and mostly >30 (80%) in group B ( P = 0.05). The average number of intracranial implantations per year was mostly 0 to 20 (58%) in group A and mostly >20 (80%) in group B ( P < 0.05). The average number of neurostimulation implantations per year was 15 (range 0–90; vagal nerve stimulation), 7 (range 0–25; responsive neurostimulation), and 4 (range 0–10; deep brain stimulation). In 78% of programs, fellows are not required to present a minimum number of epilepsy surgery cases in multidisciplinary conference before graduation. Roughly half of programs (51%) reported not using objective measures to assess fellow competency in epilepsy surgery. Conclusions: Our results suggest significant variability in epilepsy surgery volume and, consequently, fellow exposure to surgical cases and lack of standardized, objective measures in fellow teaching and assessment in the field of epilepsy surgery across programs in the United States. We advocate development of a core epilepsy surgery curriculum including minimum standards at the national level.
Inequities in Therapy for Infantile Spasms: A Call to Action
ObjectiveThe aim of this study was to determine whether selection of treatment for children with infantile spasms (IS) varies by race/ethnicity.MethodsThe prospective US National Infantile Spasms Consortium database includes children with IS treated from 2012 to 2018. We examined the relationship between race/ethnicity and receipt of standard IS therapy (prednisolone, adrenocorticotropic hormone, vigabatrin), adjusting for demographic and clinical variables using logistic regression. Our primary outcome was treatment course, which considered therapy prescribed for the first and, when needed, the second IS treatment together.ResultsOf 555 children, 324 (58%) were non‐Hispanic white, 55 (10%) non‐Hispanic Black, 24 (4%) non‐Hispanic Asian, 80 (14%) Hispanic, and 72 (13%) other/unknown. Most (398, 72%) received a standard treatment course. Insurance type, geographic location, history of prematurity, prior seizures, developmental delay or regression, abnormal head circumference, hypsarrhythmia, and IS etiologies were associated with standard therapy. In adjusted models, non‐Hispanic Black children had lower odds of receiving a standard treatment course compared with non‐Hispanic white children (odds ratio [OR], 0.42; 95% confidence interval [CI], 0.20–0.89; p = 0.02). Adjusted models also showed that children with public (vs. private) insurance had lower odds of receiving standard therapy for treatment 1 (OR, 0.42; CI, 0.21–0.84; p = 0.01).InterpretationNon‐Hispanic Black children were more often treated with non‐standard IS therapies than non‐Hispanic white children. Likewise, children with public (vs. private) insurance were less likely to receive standard therapies. Investigating drivers of inequities, and understanding the impact of racism on treatment decisions, are critical next steps to improve care for patients with IS. ANN NEUROL 2022;92:32–44