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Delays to care in infantile epileptic spasms syndrome: Racial and ethnic inequities. Epilepsia 2024 Jan;65(1):107-114

Date

11/13/2023

Pubmed ID

37953072

DOI

10.1111/epi.17827

Scopus ID

2-s2.0-85178962518 (requires institutional sign-in at Scopus site)

Abstract

OBJECTIVE: Non-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.

METHODS: Diagnostic delays were evaluated in a retrospective cohort of 100 children with new onset IESS between January 2019 and May 2022.

RESULTS: Children 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).

SIGNIFICANCE: Disproportionate 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.

Author List

Abath CB, Gupta N, Hadjinicolaou A, Donatelli S, Singh A, Merchant S, Ryan ME, Soby M, Ryan C, Nelson AK, Maldonado Pacheco JE, Zhang B, Williams DN, Yuskaitis CJ, Harini C

Author

Avantika Singh MBBS Assistant Professor in the Neurology department at Medical College of Wisconsin




MESH terms used to index this publication - Major topics in bold

Child
Epilepsy
Humans
Prospective Studies
Retrospective Studies
Spasm
Spasms, Infantile
Syndrome
United States