(COLUMBUS, Ohio) – New research from the Abigail Wexner Research Institute at Nationwide Children’s Hospital has found that as a result of the increased number of accredited epilepsy centers in the United States, drug-resistant epilepsy (DRE) patients have easier access to specialized testing and services. The report, which describes level 3 and level 4 epilepsy centers that were accredited by the National Association of Epilepsy Centers (NAEC) from 2012 to 2019, published this week in Neurology.
Adam Ostendorf, MD, the director of the Epilepsy Monitoring unit at Nationwide Children's Hospital, examined the expanse and trends of NAEC-accredited epilepsy centers in the United States from 2012 to 2019. During the study period, growth was seen in various procedure volumes as well as DRE patient access to non-surgical resources.
“This exciting data set showed how epilepsy is managed throughout the United States. It gave insight to the varying resources, services and procedures that DRE patients have access to,” said Dr. Ostendorf. “We can now use this data to better examine disparities in access to epilepsy surgery, as well as study comparative outcomes between centers.”
On an annual basis, the NAEC collects data from accredited epilepsy centers on hospital-based epilepsy monitoring unit (EMU) size and admissions, diagnostic testing, surgeries and other services. Over the course of the study, the number of NAEC-accredited centers increased from 161 to 256. The largest increase in centers across all levels and populations was seen in adult- or pediatric-only centers, with the most increase to access in level 3 and pediatric epilepsy centers. Researchers found the largest growth in procedure volumes occurred in laser interstitial thermal therapy (LITT) (61%), responsive neurostimulation (RNS) implantations (114%) and intracranial monitoring without resection (152%).
When researchers looked at the data, they found the availability of supplemental services and access to advanced diagnostic and therapeutic options increased as epilepsy centers received accreditation.
“In the past, patients have not always had access to various non-surgical resources,” said Dr. Ostendorf. “These resources can include complex testing, alternative or complementary medicine, education of the ketogenic diet and genetic testing and counseling.”
While the current NAEC accreditation process emphasizes structural and process measures of epilepsy center care, patient outcome data would better incentivize quality care. Addressing data gaps will help assess the quality of treatment that patients receive across the entire county and furthermore, will help standardize care across health care networks.
“The care received by DRE patients differs across epilepsy centers in the United States,” said Dr. Ostendorf. “This study helped to identify variables, such as the physical location or environment of a NAEC center, that contribute to inconsistent care. Moving forward, it is crucial that we understand how these differences in centers translates to differences in care between patients across the country.”
About the Abigail Wexner Research Institute at Nationwide Children's Hospital
Named to the Top 10 Honor Roll on U.S. News & World Report’s 2021-22 list of “Best Children’s Hospitals,” Nationwide Children’s Hospital is one of America’s largest not-for-profit free-standing pediatric health care systems providing unique expertise in pediatric population health, behavioral health, genomics and health equity as the next frontiers in pediatric medicine, leading to best outcomes for the health of the whole child. Integrated clinical and research programs are part of what allows Nationwide Children’s to advance its unique model of care. As home to the Department of Pediatrics of The Ohio State University College of Medicine, Nationwide Children’s faculty train the next generation of pediatricians, scientists and pediatric specialists. The Abigail Wexner Research Institute at Nationwide Children’s Hospital is one of the Top 10 National Institutes of Health-funded free-standing pediatric research facilities in the U.S., supporting basic, clinical, translational, behavioral and population health research. The AWRI is comprised of multidisciplinary Centers of Emphasis paired with advanced infrastructure supporting capabilities such as technology commercialization for discoveries; gene- and cell-based therapies; and genome sequencing and analysis. More information is available at NationwideChildrens.org/Research.
Information on NAEC
The National Association of Epilepsy Centers, known as NAEC, is a non-profit association with a membership of more than 260 specialized epilepsy centers in the United States. NAEC was founded in 1987 by physicians committed to setting a national agenda for quality epilepsy care. NAEC published its first iteration of its Guidelines for Essential Services, Personnel, and Facilities in Specialized Epilepsy Centers in 1990. The Association continues its work to develop standards of care and promote their adoption by epilepsy centers through its center accreditation program.
NAEC’s mission is to support epilepsy centers in delivering quality comprehensive care to people with epilepsy, by setting standards of care, advocating for access to high quality epilepsy center services, and providing knowledge and resources to its member centers. NAEC pursues an active agenda, educating public and private insurers, policymakers, and government officials about the complexities of and need for patient access to specialized epilepsy services. More information about NAEC and its member centers can be found at www.naec-epilepsy.org.
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Reference: Ostendorf AP, Ahrens SM, Lado FA, Arnold ST, Bai S, Bensalem Owen MK, Chapman KE, Clarke DF, Eisner M, Fountain NB, Gray JM, Hopp JL, Riker E, Schuele SU, Small BV, Herman ST. Unites States Epilepsy Center Characteristics: A Data Analysis From the National Association of Epilepsy Centers. American Academy of Neurology. 2022 Feb 1.
Link to study here.