Inequities in Therapy for Infantile Spasms: A Call to Action

Abstract

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).

Temporal trends in the cost and use of first‐line treatments for infantile epileptic spasms syndrome

“…Although the absolute values and costs may change, it is likely that the temporal trends in costs and use would be similar in these populations. Prior literature has identified inequities in the treatment of IESS: non‐Hispanic Black patients and patients with public insurance have a lower likelihood of receiving a standard treatment course with a first‐line treatment as the initial or second treatments 40 . Unfortunately, the MarketScan database does not include data on race or zip code to evaluate whether these inequities have changed over the years.…”

“…Prior literature has identified inequities in the treatment of IESS: non-Hispanic Black patients and patients with public insurance have a lower likelihood of receiving a standard treatment course with a first-line treatment as the initial or second treatments. 40 Unfortunately, the MarketScan database does not include data on race or zip code to evaluate whether these inequities have changed over the years. Future studies will evaluate whether the trends we found in our population (increase in cost and decrease in use of affect differently patients of different races, socioeconomic statuses, and different insurance types.…”

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

“…13,[15][16][17][18][19] That racial and ethnic inequities exist for infants highlights how structural racism affects epilepsy care across age groups. 8 Health care disparities borne disproportionately by vulnerable populations, such as BIPOC children with IESS, can be catastrophic. In early onset epilepsy, as little as 1-month treatment delay was associated with an intelligence quotient loss of 12.4 points.…”

“…22 Structural racism has been used to describe this complex ecosystem and is a well-recognized social determinant of health, resulting in worse outcomes in pediatrics, neurology, and epilepsy. 8,21,[23][24][25][26] Determining precisely how structural racism impacts children with IESS will require further study and should integrally involve participation of affected families. 12 Despite this being a single-centered study with full access to all records, we were unable to determine precise causes for delays in most patients.…”

“…Recent efforts have exposed previously unrecognized disparities in the care of children with IESS. Pediatric Epilepsy Research Consortium (PERC) data revealed that non‐Hispanic (NH) Black children had decreased odds of receiving standard treatment course compared with White/NH children, despite controlling for confounders such as insurance, socioeconomic factors, and others 8 . In addition, the Assess Symptoms and Specialists in Infantile Spasm Treatment (ASSIST) study found delays to effective neurological care for non‐English‐speaking families for children with IESS 6 …”