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Inequities in Therapy for Infantile Spasms: A Call to Action
Fiona M Baumer1, John R Mytinger2, Kerri Neville3
1Department of Neurology, Division of Child Neurology, Stanford University School of Medicine, Palo Alto, CA, USA.
Insights
Treatment for infantile spasms (IS) in Black children may be less standard compared to White children. This study highlights potential racial disparities in IS therapy, emphasizing the need to investigate and address inequities in care.
Area of Science:
- Pediatric Neurology
- Clinical Pediatrics
- Health Services Research
Background:
- Infantile spasms (IS) is a severe epilepsy syndrome in infants.
- Standard therapies for IS include prednisolone, adrenocorticotropic hormone, and vigabatrin.
- Understanding treatment variations across demographic groups is crucial for equitable care.
Purpose of the Study:
- To investigate if race/ethnicity influences the selection of standard treatment for infantile spasms (IS).
- To identify potential disparities in IS treatment based on race and insurance status.
Main Methods:
- Analysis of a prospective database of children with IS treated between 2012 and 2018.
- Logistic regression was used to examine the association between race/ethnicity and receipt of standard IS therapy, adjusting for covariates.
- The primary outcome was the treatment course, encompassing first and second treatment regimens.
Main Results:
- Non-Hispanic Black children had significantly lower odds of receiving a standard IS treatment course compared to non-Hispanic White children (OR, 0.42; P=.02).
- Children with public insurance were less likely to receive standard therapy compared to those with private insurance (OR, 0.42; P=.01).
- Several clinical and demographic factors were associated with standard therapy receipt.
Conclusions:
- Racial and insurance-based disparities exist in the treatment of infantile spasms.
- Non-Hispanic Black children and those with public insurance are less likely to receive standard IS therapies.
- Further research into the drivers of these inequities, including the impact of racism, is essential to improve care for all children with IS.
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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