United States Epilepsy Center Characteristics

Abstract

Background and Objectives:Patients with drug resistant epilepsy (DRE) may benefit from specialized testing and treatments to better control seizures and improve quality of life. Most evaluations and procedures for DRE in the United States are performed at epilepsy centers accredited by the National Association of Epilepsy Centers (NAEC). 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. This article highlights trends in epilepsy center services from 2012 through 2019.Methods:We analyzed data reported in 2012, 2016, and 2019 from all level 3 and level 4 NAEC accredited epilepsy centers. Data were described using frequency for categorical variables and median for continuous variables and were analyzed by center level and center population category. EMU beds, EMU admissions, epileptologists, and aggregate procedure volumes were also described using rates per population per year.Results:During the period studied, the number of NAEC accredited centers increased from 161 to 256, with the largest increases in adult- and pediatric-only centers. Growth in EMU admissions (41%), EMU beds (26%), and epileptologists (109%) per population occurred. Access to specialized testing and services broadly expanded. 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%) over the study period. Corpus callosotomies and vagus nerve stimulator (VNS) implantations decreased (-12.8% and -2.4% respectively), while growth in temporal lobectomies (5.9%), extratemporal resections (11.9%), and hemispherectomies/otomies (13.1%) lagged center growth (59%), leading to a decrease in median volumes of these procedures per center.Discussion:During the study period, the availability of specialty epilepsy care in the U.S. improved as the NAEC implemented its accreditation program. Surgical case complexity increased while aggregate surgical volume remained stable or declined across most procedure types, with a corresponding decline in cases per center. This article describes recent data trends and current state of resources and practice across NAEC member centers and identifies several future directions for driving systematic improvements in epilepsy care.

The State of Specialized Epilepsy Care in the States: Increased Access, New Tools, but the Same Dismal Underutilization of Epilepsy Surgery

“…Therefore, any scientific analysis of this data deserves our close attention. The major themes that emerge from the latest such analysis by Ostendorf et al, 1 reviewed here, at three times points – 2012, 2016, and 2019, are: a) Improved access to care: The number of reporting NAEC member centers, pediatrics, and adults, increased from 161 in 2012 to 256 in 2019 (+59%). It translated into growth in EMU admissions and beds per 1 million people, which was led by level 3 centers (+159%, +200%, respectively) compared to level 4 (+34%, +47%, respectively). b) Increased number of care providers and technologists : Epileptologists per 1 million people increased in adult and pediatric centers.…”

Surgery for pediatric drug resistant epilepsy: a narrative review of its history, surgical implications, and treatment strategies

“…In 2008, over 70% of surgical cases were readily apparent operative epilepsy cases ( 16 ). Yet despite these findings, and other strong evidence that supports the utility of surgery in medically refractory epilepsy, the number of patients referred for surgery and who undergo epilepsy surgery are less than expected ( 17 , 18 ). Traditional, open surgical resection and disconnection surgery aim to achieve seizure freedom, reducing the need for medications and improving the patient’s quality of life.…”

Integrating Network Neuroscience Into Epilepsy Care: Progress, Barriers, and Next Steps

“…Over time, epilepsy organizations recommended standard equipment and expertise for epilepsy centers. 52 This standardization has improved the consistency of care across institutions, but how do we adapt these recommendations for the modern era of network neuroscience?…”