Delays to care in infantile epileptic spasms syndrome: Racial and ethnic inequities

Abstract

AbstractObjectiveNon‐Hispanic (NH) Black children are less likely to receive a standard treatment course for infantile epileptic spasms syndrome (IESS) than White/NH children at pediatric tertiary care epilepsy centers in the United States. However, if inequities exist in time to diagnosis is unknown. Diagnostic delays as little as 1 week can be associated with worse developmental outcomes.MethodsDiagnostic delays were evaluated in a retrospective cohort of 100 children with new onset IESS between January 2019 and May 2022.ResultsChildren with Black, Indigenous, and People of Color (BIPOC) caregivers were more likely to experience clinically significant delays in referral from first provider to neurologist, when compared to White/NH children, even after controlling for other demographic and clinical variables (odds ratio = 4.98, confidence interval = 1.24–19.94, p = .023).SignificanceDisproportionate diagnostic delays place BIPOC children at risk of adverse developmental and epilepsy outcomes. Further interventional prospective and qualitative studies are needed to address inequities in care.