Commentary
Article
Pediatric AES Insights: Addressing Health Disparities and Advancing Neonatal Epilepsy Care
Pediatric epilepsy specialists Adam Numis, MD, and Laura Kirkpatrick, MD, highlighted efforts to standardize data collection for pediatric epilepsy health equity and improve neonatal epilepsy outcomes.
Adam Numis, MD
(Credit: University of California, San Francisco)
Infantile epileptic spasms syndrome (IESS) is a common type of epilepsy that begins in infancy, affecting about 1 in 3000 children.1 While there is consensus on first-line treatments like adrenocorticotropic hormone, corticosteroids, and vigabatrin, medical institutions vary in their approaches to second- and third-line therapies, EEG monitoring, and managing treatment adverse effects. To explore these differences, the Pediatric Epilepsy Research Consortium (PERC) conducted a recent study analyzing treatment practices at prominent pediatric epilepsy centers in the U.S.2
A survey distributed to 75 PERC-member centers yielded a 48% response rate, with most centers adhering to institution-specific IESS treatment protocols. These protocols consistently recommended first- and second-line therapies, with 83% advising repeat EEGs and treatment adjustments after 14 days for cases without remission. However, the study highlighted significant variability in practices such as initiating dual therapy, selecting third-line treatments, recommending ketogenic diets, and monitoring adverse effects.
Presented by senior author Adam Numis, MD, a pediatric epilepsy specialist at University of California, San Francisco, at the 2024 American Epilepsy Society Annual Meeting, held December 6-10, in Los Angeles, the findings emphasized the need for standardized, consensus-based treatment guidelines. Building on these insights, Numis and his team plan to develop a modified Delphi survey to create publicly accessible guidelines aimed at improving and unifying care for infants with IESS.
Laura Kirkpatrick, MD
(Credit: NeurologyLive)
In an interview with NeurologyLive® at AES 2024, Numis and Laura Kirkpatrick, MD, a pediatric epilepsy specialist at UPMC Children's Hospital of Pittsburgh, delved deeper into the challenges and opportunities in advancing epilepsy care. They emphasized the critical role of standardizing sociodemographic data collection to address health disparities in pediatric epilepsy and explored the potential of innovative tools, such as blood-based biomarkers, to identify neonates at high risk for epilepsy. Highlighting the importance of collaboration, both experts praised the AES for fostering cross-disciplinary efforts to drive innovation and improve equitable treatment practices.
NeurologyLive: For our audience, could you give an overview of your presentations and talk about why this topic interests you?
Laura Kirkpatrick, MD: As part of the Pediatric Epilepsy Research Consortium, which I'll refer to as PERC, we have a special interest group focused on health equity. This group conducted a scoping review of the literature and found significant health disparities in pediatric epilepsy. However, most studies in this field are not reporting on sociodemographic variables of interest. Because of this, we aimed to form a common data element set to standardize the collection of sociodemographic variables and social determinants of health in pediatric epilepsy research. Our study used concept mapping among PERC members to establish priorities for these common data elements.
Adam Numis, MD: My work is through the Neonatal Seizure Registry, a consortium of centers across the United States focusing on babies who have seizures because of brain injury. My presentation [at the meeting] focused on when and how epilepsy develops following brain injury in the newborn period. This cohort of babies was recruited about 8 years ago, and we've been following them annually, gathering data on seizures, parent well-being, anxiety, and overall health. This presentation specifically addressed when seizures develop and how to predict which children are likely to experience them.
Dr. Kirkpatrick, could you expand on the sociodemographic variables you mentioned? Where should we start in terms of capturing this data?
Laura Kirkpatrick, MD: Some studies don't even report basic information, such as a patient's self-identified race or ethnicity, which is crucial. Our scoping review highlighted significant disparities related to patient and family language, particularly when it isn't concordant with that of their healthcare provider. While this information often reveals disparities when collected, it is severely underreported in the literature. Language equity is a critical area that isn't being addressed systematically.
To build on that, your work focused specifically on mapping analysis. For those unfamiliar, what can this method provide, and what are some of its advantages?
Laura Kirkpatrick, MD: Concept mapping is a participatory, mixed-method approach that facilitates consensus-building within a group while accommodating diverse perspectives. While methods like the modified Delphi technique are more widely known, concept mapping stands out for its participatory nature. It allows for open discussion and the free exchange of ideas, which I believe is essential for achieving true consensus.
Dr. Numis, diving deeper into your presentation, how would you currently characterize our detection and treatment of acute, provoked neonatal seizures? Where do we excel, and where do we fall short?
Adam Numis, MD: First, my presentation compared epilepsy development in term versus premature infants. We've observed that most term infants who experience brain injury and acute provoked seizures develop epilepsy within the first 2 years of life. However, in premature infants, epilepsy tends to develop later—around ages 4 to 6. This underscored the need for tailored follow-up and guidance for families.
Another key finding is the severity of epilepsy in this population. By tracking families annually, we've identified that over 40% of these children require intensive care for their epilepsy, emphasizing the need for early identification and prevention strategies.
In terms of seizure detection, we've known for some time that EEG is critical. Babies often exhibit movements that mimic seizures, and EEG is the only reliable method to confirm seizure activity. Additionally, recent research from the Neonatal Seizure Registry has shown that stopping anti-seizure medications before hospital discharge has no negative impact on development or epilepsy risk. This is a significant shift from older practices, where medications were continued for much longer.
Do you feel the care process for these babies is standardized, or does it vary across institutions and regions?
Adam Numis, MD: You're touching on implementation science, which is challenging because of limited funding. While we try to disseminate recommendations through volunteer efforts, the next step involves dedicated implementation scientists to ensure practices become standardized across institutions.
Dr. Numis, looking ahead, what steps can the clinical community take to address these challenges and improve outcomes?
Adam Numis, MD: From a general practice perspective, limiting exposure to antiseizure medications and stopping them early is crucial. Beyond that, my research focuses on blood-based biomarkers to identify babies at high risk for epilepsy. These biomarkers, with a validated sensitivity of about 90%, could enable targeted interventions to prevent epilepsy development. We're laying the groundwork for clinical trials and hope to secure funding for these efforts.
What has stood out to you about this year’s AES meeting?
Laura Kirkpatrick, MD: The best part of AES is reconnecting with colleagues nationwide who share a similar mission. I also commend the American Epilepsy Society for advancing discussions around health disparities. They’ve created programs like Bridge for junior investigators, offering mentoring opportunities and a dedicated poster session in this field.
Adam Numis, MD: I agree. AES excels at bringing together basic scientists and clinical researchers, fostering cross-disciplinary collaboration. It's a unique opportunity to exchange ideas, from translating findings from animal models to clinical applications and vice versa. This collaborative environment is invaluable.
Transcript edited for clarity. Click here for more AES 2024 coverage.
