Abstracts

Rationale: Children presenting with new-onset seizures have variable access to resources and may not receive timely and adequate treatment. Children suffer devastating consequences when not evaluated in a timely manner by an expert team of medical providers. Consequences can be especially severe for children under the age of two and for children who have psychiatric, cognitive, and behavioral co-morbidities. There are no published scientific data on how children with new-onset seizures are evaluated and treated across the country. Our goal was to gain insight into how different epilepsy centers across the country evaluate and treat children with new-onset seizures to inform future studies aimed at establishing the optimal unifying approach for providing comprehensive care for these children. Methods: We conducted a national survey of Epilepsy Centers that are part of the Pediatric Epilepsy Research Consortium (PERC) focusing on children presenting with new-onset seizures. The questions were aimed at describing access to care, resources, how care is delivered, whether centers prioritize based on clinical presentation and/or age, and limitations to care. The survey was sent to 80 Epileptologists at 41 different Epilepsy Centers that are part of PERC. Twenty nine Pediatric Epileptologists completed the survey representing 24 centers. Results: Most centers identified limitations based on insurance coverage, resources, long wait times and long travel times. There is substantial variability in the volume of patients seen in each center and how much time is designated per visit. Although 30% are the only center in the city or larger region, 92% try to accommodate for the geographic limitations by providing satellite clinics. The satellite clinics do not have the same resources as the primary sites and 55% have only clinical care without EEG monitoring capabilities. Approximately 30% of centers have a dedicated new-onset seizure clinic. The median time for children to be seen is 2-4 weeks and 12% report that it takes more than 5 weeks until the patient is seen. Nearly all centers (92%) prioritize patients for suspected Infantile Spasms and young age. Most centers (58%) do not have a screening process for cases that are clinically not suggestive of seizures. Although 79% have a triage process, many have nonclinical staff such as the contact center (42%) and secretaries (37%) in charge of screening and triaging. Conclusions: Children presenting with new onset seizures often do not receive timely and comprehensive care due to limitations in resources and lack of established standard of care. Many centers do not have a screening process and employ non-clinical personnel for screening and triaging patients. This lack of screening and triaging by clinicians takes up valuable time and resources. Although 30% of centers have a dedicated new-onset seizure clinic, this survey revealed that there is substantial variability in how these patients are evaluated. This high variability in standard of care warrants further investigation with future studies. Funding: N/A