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. 2022 Jul;92(1):32-44.
doi: 10.1002/ana.26363. Epub 2022 Apr 28.

Inequities in Therapy for Infantile Spasms: A Call to Action

Fiona M Baumer  1 , John R Mytinger  2 , Kerri Neville  3 , Christina Briscoe Abath  4 , Camilo A Gutierrez  5 , Adam L Numis  6 , Chellamani Harini  4 , Zihuai He  1 , Shaun A Hussain  7 , Anne T Berg  8 , Catherine J Chu  9 , William D Gaillard  10 , Tobias Loddenkemper  4 , Archana Pasupuleti  10 , Debopam Samanta  11 , Rani K Singh  12 , Nilika S Singhal  6 , Courtney J Wusthoff  1 , Elaine C Wirrell  13 , Elissa Yozawitz  14 , Kelly G Knupp  15 , Renée A Shellhaas  3 , Zachary M Grinspan  16   17 ; Pediatric Epilepsy Research Consortium; National Infantile Spasms Consortium
Affiliations

Inequities in Therapy for Infantile Spasms: A Call to Action

Fiona M Baumer et al. Ann Neurol. 2022 Jul.

Abstract

Objective: The aim of this study was to determine whether selection of treatment for children with infantile spasms (IS) varies by race/ethnicity.

Methods: The 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.

Results: Of 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).

Interpretation: Non-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.

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Conflict of interest statement

Potential Conflicts of Interest

The NISC prospective study was supported by the Pediatric Epilepsy Research Foundation and the American Epilepsy Society. FMB receives funding for her research efforts from the NINDS K23NS116110. Unrelated to this study, TL has performed consulting for Lundbeck and Upsher Smith, companies selling vigabatrin, Amzell, a company investigating synthetic hormone treatment, and through BCH TL has conducted investigator-initiated studies funded by Mallinckrodt, a company selling ACTH, and investigator-initiated studies funded by Lundbeck and Upsher Smith, companies selling vigabatrin. Unrelated to this study, TL filed intellectual property related to epilepsy and IS diagnosis.

Figures

FIGURE:
FIGURE:
Participant inclusion and definition of outcome measures. Flow diagram indicating which participants in the National Infantile Spasms Consortium (NISC) database were included in the analysis and illustrating how the primary outcome of treatment course was defined based on therapies received for treatment 1 and treatment 2. Number in parentheses = n for each step.
See this image and copyright information in PMC

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