New NAEC Guidelines for Epilepsy Centers Aim to Advance Comprehensive Care

In February of this year, the National Association of Epilepsy Centers (NAEC) published the new 2023 Guidelines for epilepsy centers after a decade. In part 1 of this 2-part Q&A, the co-chairs behind the updated guidelines, Susan Arnold, MD, an adjunct professor of pediatric neurology at Yale, and Fred Lado, MD, PhD, a professor of neurology at the Zucker School of Medicine at Hofstra-Northwell and director of the Epilepsy Division for the Central and Eastern Regions of Northwell Health, discuss the key factors that prompted the new guidelines, and how the new recommendations expand beyond seizure management, emphasizing the importance of comprehensive care. The experts also highlight the role of genetic testing in improving patient outcomes and address the health disparities and inequities that are underscored in the guidelines.

In the upcoming part 2 of the Q&A, Dr Arnold and Dr Lado explore the challenges and successes epilepsy centers face in implementing the newly expanded guidelines, particularly regarding mental health screenings and multidisciplinary care.

For more expert insights on epilepsy treatment, visit the excellence forum.

Editor’s note: This interview has been lightly edited for clarity.

Neurology Learning Network (NLN): What were the key drivers for updating the guidelines after more than a decade?

Susan Arnold, MD, and Fred Lado, MD, PhD: NAEC has published guidelines for epilepsy centers about every 10 years since the organization was established in 1988. The Guidelines for Essential Services, Personnel, and Facilities in Specialized Epilepsy Centers was first published in 1990 and revised in 2000 and 2010. In 2021, NAEC’s leaders recognized that guideline development had changed significantly in the last 10 years and decided to incorporate a more current approach to guideline development, including a guideline panel that would reflect the various professionals with roles in epilepsy care as well as patients and caregivers. In addition, NAEC wanted to see what evidence existed to support guideline recommendations. NAEC hired consultants with expertise in guideline development to do a literature search and to manage an evidence-informed process. While the guideline recommendations are listed as consensus-based they include references to the literature that informed the recommendations.

NLN: How do these guidelines address the broader aspects of patient well-being beyond seizure management, such as incorporating care for comorbid conditions, for example?

Dr Arnold and Dr Lado: In the past, NAEC guidelines focused primarily on inpatient care and epilepsy surgical procedures. The new guidelines recognize that most epilepsy care is provided in the outpatient setting and that comprehensive care includes not just seizure management, but also addressing other medical conditions that occur commonly in people with epilepsy.

The first step in addressing these problems is to identify them appropriately, and the new guidelines recommend that all centers perform regular screening for age-appropriate comorbid conditions. In children, this includes screening for neurodevelopmental disorders and problems with language, attention, learning, and behavior. Adults should be screened for cognitive disorders and vocational problems. Both children and adults should be screened for depression and anxiety, which occur at higher rates in people with epilepsy as compared with the general population.

Epilepsy centers may not have all the necessary specialists on-site to treat each of the conditions mentioned above, but they must be able to refer patients for care when needed. Recognizing the challenges inherent in doing so, the guidelines emphasize the importance of a care coordinator as an essential member of the epilepsy team.

NLN: Could you explain how genetic insights might influence how epilepsy is diagnosed and managed in specialized centers? How will this impact outcomes for patients?

Dr Arnold and Dr Lado: Another new area addressed by the 2023 guidelines is the importance of genetic testing. Studies showed that comprehensive genetic testing can uncover a genetic cause for many children and adults with previously unexplained epilepsy. Having a specific diagnosis impacts the lives of people with epilepsy in many ways.  In addition to the intangible benefit of knowing why one is experiencing seizures, a genetic diagnosis provides prognostic information to help individuals plan for the future, identifies potential comorbid conditions that may need surveillance, and impacts family planning. It also plays an increasingly important role in guiding the choice of therapy, helping providers choose more effective medications, and improving patient outcomes. The guidelines direct centers to develop protocols to decide which patients will benefit from genetic testing and highlight the importance of genetic counseling to assist patients and family members to better understand the implications of genetic test results.

NLN: Health disparities and inequities are highlighted in the guidelines. What specific steps can epilepsy centers take to address these disparities, especially in underserved populations?

Dr Arnold and Dr Lado: While no single document can cover all areas of healthcare disparities, the guidelines highlight some areas where epilepsy centers can take action. Patients and family representatives on the guidelines panel stressed the need for centers to address barriers to accessing both care and medication. Consequently, the guidelines recommend that centers optimize scheduling to achieve timely patient appointments and prioritize patients with more urgent needs. They specify that centers should use telehealth services as a means to improve access to care, especially relevant for people with epilepsy who may have limitations on driving. The guidelines require centers to develop strategies to assist patients with navigating obstacles to medication access and to have a licensed clinical social worker on staff to assist patients in overcoming barriers to health care access.

The recommendations also address strategies to overcome language barriers. The importance of patient education and communication is highlighted throughout the guidelines. These are areas where non-English speaking patients are at a disadvantage. Miscommunication leads to medication errors and poorer outcomes, and centers should provide interpretation services in person or via telehealth to ensure patients receive instructions in their preferred language. Centers should also provide all written educational materials in the languages used commonly in their communities.

Dr Susan Arnold is an adjunct Professor of Pediatric Neurology at Yale and was previously professor of Neurology and Pediatrics at UT Southwestern Medical Center, where she directed their Pediatric Epilepsy Center for many years. She is a graduate of Cornell University School of Medicine and trained at Yale University in Connecticut and Washington University in St Louis, Missouri. She is board certified in Child Neurology, Epilepsy, and Clinical Neurophysiology.  She has served as a board member and committee chair for the National Association of Epilepsy Centers (NAEC) and co-chaired the Guidelines for Specialized Epilepsy Centers: Report of the National Association of Epilepsy Centers Guideline Panel published in February 2024. In addition, she has written epilepsy care guidelines for the International League Against Epilepsy. 

Dr Fred Lado, MD PhD, is Professor of Neurology at the Zucker School of Medicine at Hofstra-Northwell and the Director of the Epilepsy Division for the Central and Eastern Regions of Northwell Health. He received his undergraduate medical education at New York University and his postgraduate medical education at New York Presbyterian - Cornell (neurology) and Montefiore Medical Center. His clinical practice is focused on adults with drug-resistant epilepsy. He is interested in the treatment of medically refractory epilepsy and in the use of non-invasive testing to localize the brain regions generating seizures. Dr Lado has a large outpatient practice and is also actively caring for inpatients in the epilepsy monitoring unit. He is a national leader in epilepsy, serving as the President of the National Association of Epilepsy Centers since January 2023 and an at-large board member of the American Epilepsy Society. Dr Lado co-chaired the Guidelines for Specialized Epilepsy Centers: Report of the National Association of Epilepsy Centers Guideline Panel Guideline Panel published in February 2024.