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Delays to care in infantile epileptic spasms syndrome: Racial and ethnic inequities
Christina Briscoe Abath1, Nishtha Gupta1, Aristides Hadjinicolaou2
1Department of Neurology, Comprehensive Epilepsy Program, Division of Epilepsy, Boston Children's Hospital, Boston, Massachusetts, USA.
Insights
Children from racial/ethnic minority backgrounds experience longer diagnostic delays for infantile epileptic spasms syndrome (IESS). These delays in diagnosing IESS can negatively impact developmental outcomes.
Area of Science:
- Pediatric Neurology
- Child Development
- Health Equity
Background:
- Infantile epileptic spasms syndrome (IESS) is a rare epilepsy syndrome in infants.
- Standard treatment for IESS is often delayed in Non-Hispanic (NH) Black children compared to White/NH children.
- The impact of diagnostic delays on IESS outcomes is not well understood.
Purpose of the Study:
- To investigate potential inequities in the time to diagnosis for infantile epileptic spasms syndrome (IESS).
- To compare diagnostic delays between racial/ethnic groups in pediatric epilepsy centers.
Main Methods:
- Retrospective cohort study of 100 children with new-onset IESS between January 2019 and May 2022.
- Evaluation of diagnostic delays, including referral time from the first provider to a neurologist.
Main Results:
- Children with Black, Indigenous, and People of Color (BIPOC) caregivers faced significantly longer delays in referral to a neurologist compared to White/NH children.
- These delays persisted even after controlling for demographic and clinical variables (OR=4.98, CI=1.24-19.94, p=.023).
Conclusions:
- Disproportionate diagnostic delays for IESS place BIPOC children at increased risk for adverse developmental and epilepsy outcomes.
- Further research, including prospective and qualitative studies, is necessary to address these healthcare inequities.
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.
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