Navigating the New NAEC 2023 Epilepsy Guidelines: Challenges and Solutions

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 2 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, explore the challenges and successes epilepsy centers face in implementing the newly expanded guidelines, particularly regarding mental health screenings and multidisciplinary care.

In the previous part 1, Dr Arnold and Dr Lado 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.

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

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

Meagan Thistle, Assistant Editorial Director, Neurology Learning Network (NLN): With 52 new recommendations, what do you see as the biggest challenges in implementing these guidelines at epilepsy centers across the country? Are there any particular recommendations that have required or will require more resources or institutional support to fully integrate into practice?

Susan Arnold, MD, and Fred Lado, MD, PhD: The initial response from US epilepsy centers to the new guidelines has been favorable. Centers see the importance of expanding the focus of the guidelines to include outpatient care and services in addition to the inpatient procedures covered in the past.

However, as centers begin to implement the guideline recommendations, the requirements may demand additional personnel and processes that are not currently available. For example, the guidelines dictate that centers should be screening patients for a variety of comorbid conditions discussed [in part 1]. Most centers will need to develop screening protocols and train personnel to comply with these expectations.

The NAEC has provided advice and resources to help centers build inpatient protocols in the past, and plans to assist centers in facing these new challenges through its annual meeting and online educational activities. 

Addressing the need for additional personnel or complex procedures is more challenging.

The guidelines recognize the important role played by genetic counselors, mental health providers, and dieticians in providing comprehensive care. For some centers that lack these professionals, the recommendations may be the catalyst that compels their host institutions to fund new positions. For others, especially smaller centers and those in rural areas, this may not be possible. In most instances, the recommendations allow for services to be provided either on site or by referral.

One goal of the guidelines process is to encourage centers to work together to offer subspecialty care, enhancing collaborative relationships and referrals between centers to offer patients access to specialists or surgical procedures not available at every center.

In pursuit of this goal of comprehensive, multicenter care, a care coordinator can play a pivotal role in facilitating referrals and communication between centers, and this is reflected in the guidelines’ recommendation that all centers have a care coordinator on site.

Thistle, NLN: Since the guidelines were released in February, have there been any early challenges or successes in implementing the expanded guidelines, particularly regarding mental health screenings or multidisciplinary care coordination?

Dr Arnold and Dr Lado: NAEC had an active guideline dissemination plan, which included articles in epilepsy and other medical journals, webinars with patient organizations, and podcasts. Patient organizations expressed their support and interest in the expansion of the NAEC guidelines into outpatient chronic care, assuring timely visits and triaging patients.

The biggest challenge for the NAEC is to determine how to incorporate the guideline recommendations into the NAEC Accreditation Program. NAEC leaders are planning a phased-in process as many of the recommendations will require additional resources.

Thistle, NLN: Is there anything else that you would like to share with the audience?

Dr Arnold and Dr Lado: NAEC is very appreciative of the interest that the Guidelines have received and looks forward to working with epilepsy centers, other health care providers, health plans and patients to use the guidelines to improve the standards of care for people with epilepsy.

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.