Abstracts

Rationale: Black children are less likely to receive standard treatment course for infantile epileptic spasms syndrome (IESS), as shown by Pediatric Epilepsy Research Consortium study. Each week of delay to first-line therapy for epileptic spasms increases risk for non-response and for poor developmental outcomes. We investigated whether racial inequities existed in delays to first-line treatment.

Methods: We conducted a retrospective chart review of patients with new onset IESS between January 2019 and May 2022 at Boston Children’s Hospital to evaluate for racial inequities. Three time points of delay were defined: from caregivers noting abnormal movements to presentation to first provider, from first provider to being seen by a neurologist, and from neurologist to receipt of a first-line therapy with ACTH, prednisolone, or vigabatrin. Delay was defined as more than 7 days per time point. Data collected included demographic (age at diagnosis, gestational age at birth, race/ethnicity, insurance status, language spoken, median income based on zipcode, distance from hospital), clinical factors (developmental delay, regression, other seizure types, etiology), and treatment variables (delays to assessment, receipt of standard treatment). Race was initially collected in standard categories (White/Non-Hispanic (NH), Black/NH, Asian/NH, Hispanic, or Other) and then, due to inadequate numbers of each individual category within individual categories in our sample, grouped into White/NH and BIPOC (Black, Indigenous, Persons of Color) categories to provide the groups with adequate numbers. Primary spoken language was categorized as English or other. We performed analysis using chi-square tests with a significant p value of 0.05 or less using IBM SPSS Statistics software version 27.

Results: One hundred patients with new onset IS were included. There were 48 White/NH patients and 52 BIPOC patients. Most patients spoke English as first language (89%) and had private insurance (74%). BIPOC children were more likely to experience delays from spasm onset to presentation to the first provider (OR= 2.8, CI 1.2-6.5, p=0.019), as well as between presentation to the first provider to assessment by a neurologist (OR 4.9, CI 1.5-15.9, p=0.008). In our cohort, there were no racial inequities in delay from neurologic evaluation to initiation of first standard therapy or receipt of standard treatment course. Insurance or language spoken did not influence treatment delays. Socioeconomic data, income and geographic distance from hospital have been collected and are pending analysis.

Conclusions: BIPOC children were more likely to experience delays to IESS treatment than White/NH children. This could potentially increase the risk for BIPOC children to have worse treatment and developmental outcomes. In our cohort, racial inequities in treatment delays occurred prior to presentation to the neurologist, highlighting the need to understand and address factors leading to delays.

Funding: Boston Children's Hospital Office of Equity and Inclusion