It’s Current: NAEC Provides Us With the Recipe to Build a Better Epilepsy Center

Abstract

The National Association of Epilepsy Centers (NAEC) recently published their updated guidelines for specialized epilepsy centers. The first NAEC guidelines provided basic expectations for in-patient care, with the goal of makingan accurate diagnosis and choose the best intervention- medical or surgical. With the 2001 report, the emphasis was for epilepsy centers to be able to provide comprehensive diagnostic and treatment services. The NAEC 2010 guidelines further delineated the essential elements of level 3 and 4 specialized epilepsy centers.The goal of the 2023 guidelines is not only to provide optimal standards of care, but also to “elevate evidence-based science into standard practice.”4 Therefore, these are the first NAEC guidelines that are solely funded by NAEC and also the first founded on an evidence-informed, consensus-based process. The 2023 guidelines now include 52 recommendations across the following domains: Inpatient Services/EMU, Surgery, Diagnostic Evaluation, and Outpatient Services. The guidelines provide us with the recommendations when creating new centers or ways to improve our current centers. Well- documented guidelines such as these provide us with support when seeking additional financial and personnel resources. Put simply, these guidelines have provided us with the recipe for ideal comprehensive epilepsy care for PWE.

The National Association of Epilepsy Centers (NAEC) recently published their updated guidelines for specialized epilepsy centers. To understand the significance of these updates, it is important to understand their history. National Association of Epilepsy Center is a non-profit association that was founded in 1987 with the goal of creating national standards for quality epilepsy care, especially for those with drug-resistant epilepsy. Now with a membership of over 260 specialized epilepsy centers in the United States, NAEC sets the standards of care for people with epilepsy (PWE) and promotes their adoption through its accreditation program. ¹ The first NAEC guidelines were published in 1990 and provided basic expectations for in-patient care, including services, staff, and facilities. ¹ The overall goal of these guidelines was to make an accurate diagnosis and choose the best intervention—medical or surgical. ² With the 2001 report, the emphasis was for epilepsy centers to be able to provide comprehensive diagnostic and treatment services. ² At this time, epilepsy care was divided into 4 levels: (1) primary care provider, (2) general neurologist, (3) epilepsy centers that provide comprehensive noninvasive or straightforward surgical (such as vagal nerve stimulator implantation) epilepsy evaluation and treatment, (4) regional or national referral facility for complex neurodiagnostic monitoring and extensive surgical procedures for epilepsy. ² The NAEC 2010 guidelines further delineated the essential elements of level 3 and 4 specialized epilepsy centers. ³

In 2012, the Institute of Medicine, now known as the National Academies of Sciences, Engineering, and Medicine recommended that the NAEC and American Epilepsy Society establish criteria and a process for accreditation of epilepsy centers. This accreditation process with expanded criteria was first implemented in 2016. ¹ While the accreditation criteria use the NAEC epilepsy center guidelines for context, they are not synonymous. The accreditation criteria are updated annually, based on epilepsy center feedback. In contrast, the NAEC guidelines outline the optimal standards of care and are reviewed every 10 years. ¹

Now that we have clear definitions for level 3 and 4 epilepsy centers, as well as accreditation procedures, one may ask what additional guidelines do we need? Based on the 2023 updates, it would appear the previous guidelines were the mere beginning. This iteration has changed the goals of standards of care, the methodology for development of guidelines, provides specific direction for inpatient versus outpatient and adult versus pediatric practices, as well as expanding the previous definition of comprehensive care. ⁴

The goal of the 2023 guidelines is not only provide optimal standards of care, but also to “elevate evidence-based science into standard practice.” ⁴ Therefore, this is the first NAEC guidelines that are solely funded by NAEC and also the first founded on an evidence-informed, consensus-based process. An extensive database search was completed and ultimately 197 studies were included in the guidelines. However, evidence was not always robust enough to support quantitative analyses for evidence-based guidelines. When this occurred, expert panel advice was used. As another first, the panel included a broad distribution of providers, including physicians, advanced practice providers, social workers, nurses, EEG technologists, PWE, and caregivers. The modified Delphi process was used for all recommendations. ⁴

The 2023 guidelines now include 52 recommendations across the following domains: Inpatient Services/EMU, Surgery, Diagnostic Evaluation, and Outpatient Services. Recommendations include the following:

Inpatient services/EMU: Epilepsy centers should have an epilepsy monitoring unit (EMU) that provides 24-hour continuous video EEG monitoring that are continuously supervised by trained observers and the data is available for physician review in real time. Centers should have registered EEG technologists and physicians who are board certified in epilepsy or clinical neurophysiology, and at least one with additional certification in child neurology training if caring for pediatric patients. Epilepsy monitoring units should be equipped to manage epilepsy-related emergencies and have written protocols for events. Epilepsy monitoring unit reports should meet American Clinical Neurophysiology Society standards. ⁴

Surgery: Centers that perform surgery should have a formal multidisciplinary presurgical conference that screens patients for all epilepsy surgery options and then recommend the best procedure for epilepsy control, regardless of whether that option is available at their center. Epilepsy surgery centers should have 24-hour video EEG monitoring with intracranial electrodes, intraoperative electrocorticography, functional mapping, and have a neurosurgeon with specialized training in epilepsy surgery. ⁴

Diagnostic Evaluation: All epilepsy centers should have neuropsychologists on site or by referral; CT and MRI with epilepsy-specific MRI protocols to be interpreted by personnel with specialty training and certification; should use genetic testing as part of evaluation and offer genetic counseling from a certified genetic counselor. Centers that perform surgery should use PET, SPECT, and/or MEG for seizure localization as well as fMRI, MEG, Wada, and/or other functional mapping modalities. ⁴

Outpatient Services: All epilepsy centers should provide timely appointments for both new and existing patients and include telehealth services. Medication adherence and side effects should be assessed, and centers should have strategies to assist patients navigating barriers to medication access. All centers should have care coordinator(s). Patients should be regularly screened for behavioral health comorbidities and offer referrals or treatment. All epilepsy centers should provide comprehensive care for patients with psychogenic nonepileptic events and special needs. They should provide epilepsy-specific patient education, including counseling to PWE and childbearing potential. Psychosocial, dietary therapy, and rehabilitation services are also essential. ⁴

The 2023 NAEC recommendations are carefully constructed using literature and recommendations from multidisciplinary experts. As someone who is fortunate enough to work at a resource-rich comprehensive center that was built on providing multidisciplinary subspecialty care to patients with refractory disease, the exhaustive nature of these recommendations seems daunting. How can we ever provide all of these recommendations? Fortunately, the NAEC recognized that the recommendations extend beyond current accreditation requirements and not all centers have the resources to allow implementation of all guidelines. ⁴ Accreditation standards set the requirements. Guidelines provide the goals. Guidelines provide us with the recommendations when creating new centers or ways to improve our current centers. Well-documented guidelines such as these provide us with support when seeking additional financial and personnel resources. Put simply, these guidelines have provided us with the recipe for ideal comprehensive epilepsy care for PWE. Now it is our job to find a way to provide it.