Addressing Disparities and Improving Care Through Pediatric Epilepsy Research: Adam Numis, MD; Laura Kirkpatrick, MD

WATCH TIME: 5 minutes

“There's tremendous disparities in patient and family language and whether language is concordant with that of their health care provider. Despite showing a lot of disparities when [that information] was collected, it was really underreported in the literature. So, language equity is something very critical to collect that is not being done in a standardized way.”

Infantile epileptic spasms syndrome (IESS) is known as a common form of infant-onset epilepsy, affecting approximately 1 in 3000 pediatric patients. Although there is broad consensus on the use of standard first-line therapies, such as adrenocorticotropic hormone, corticosteroids, and vigabatrin, practices regarding second- and third-line treatments, EEG monitoring, and adverse effect management vary across institutions. To address this variability, researchers recently conducted a descriptive study through the Pediatric Epilepsy Research Consortium (PERC) to analyze current practices at major U.S. pediatric epilepsy centers.

A survey distributed to 75 PERC-member pediatric epilepsy centers revealed a 48% participation rate, with most sites adhering to institution-specific IESS treatment pathways. These pathways consistently recommended standard therapies for first- and second-line treatments, with 83% advising repeat EEG and therapy adjustments at 14 days for non-remission cases. However, notable variability was observed in the use of dual therapy at onset, third-line treatment inclusion, ketogenic diet recommendations, and adverse effect monitoring practices.

Presented at the recently concluded 2024 American Epilepsy Society Annual Meeting, held December 6-10, in Los Angeles, by senior author Adam Numis, MD, the findings highlight the need for a standardized, consensus-based treatment pathway. By leveraging these insights, Numis and colleagues aim to create a modified Delphi survey and ultimately establish publicly accessible guidelines that promote uniformity and improve care outcomes for infants with IESS.

In an interview with NeurologyLive® at AES 2024, Numis, pediatric epilepsy specialist at University of California, San Francisco, and Laura Kirkpatrick, MD, pediatric epilepsy specialist at UPMC Children's Hospital of Pittsburgh, emphasized the critical importance of addressing disparities in pediatric epilepsy care by standardizing the collection of socio-demographic variables. They highlighted how such efforts can inform equitable treatment strategies and ensure language concordance between families and healthcare providers. Furthermore, they discussed how understanding the distinct timing and severity of epilepsy development in preterm versus term infants could shape future monitoring guidelines.

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REFERENCES
1. Abath CB, Katyayan A, Harini C, et al. Treatment Practices for Infantile Epileptic Spasms Syndrome: Consensus and Variation in Major U.S. Pediatric Epilepsy Centers. Presented at: AES 2024; December 6-10; Los Angeles, CA. Abstract 1.333.