Susan Arnold, MD
Credit: US News Health
The National Association of Epilepsy Centers (NAEC) published recommendations in Neurology of the essential services needed for a comprehensive epilepsy center and the optimal manner for their delivery to advance the quality of care. This review will provide ongoing support for epilepsy centers to obtain adequate resources for their programs and for patients and caregivers to assess their quality of care.1
Among 5937 studies for a literature review, 197 articles were evaluated by a panel of 41 stakeholders. The multidisciplinary panel reached a consensus on 52 recommendations covering services from specialized epilepsy centers in both the inpatient and outpatient settings in key areas including epilepsy monitoring unit care, surgery, neuroimaging, neuropsychology, genetics, and outpatient care.
“All recommendations quickly reached consensus despite there being such a diverse panel of stakeholders, which emphasizes that the recommendations reflect the important elements of healthcare services that should be in place for an epilepsy center to provide the highest quality of care,” senior author Susan Arnold, MD, a pediatric epileptologist at Yale University School of Medicine, said in a statement.2
Top Clinical Takeaways
- The recommendations emphasize a comprehensive approach to epilepsy care, encompassing dedicated monitoring units, continuous supervision, physician expertise, and emergency preparedness, ensuring a holistic and specialized environment for patients.
- The guidelines highlight the importance of patient education, individualized safety plans, and continuous communication, promoting an inclusive approach that considers patient needs, mental health, and the challenges of specific populations, such as children and those with special needs.
- The recommendations stress the integration of specialized services, including genetic testing, psychosocial support, dietary therapy, and rehabilitation, showcasing a commitment to addressing the diverse needs of epilepsy patients and enhancing their overall well-being.
The panel had many stakeholders who supported epilepsy care centers including patient and caregiver representatives, EEG technologists, nurse practitioners, social workers, neurosurgeons, neuroradiologists, and others. These stakeholders, who conducted the literature review, drafted the recommendations following the consensus-based statements process which produces unbiased, scientifically valid guidelines through a transparent procedure that incorporates available evidence and expert opinion. Since most recommendations were informed by evidence review of a range of sources, authors noted that the panel chose not to grade the quality of studies.
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“We want to improve the quality of care across the board for people with epilepsy in the United States. NAEC has accredited centers that provide very high quality of care, but each center has different strengths. By working together with these consensus guidelines, we can elevate the standards of quality care for all centers,” Arnold said in a statement.2 “When patients feel their treatment options are limited, they don’t have to accept ‘good enough.’ Epilepsy centers offer hope. But epilepsy centers will need the resources to provide this comprehensive level of care. We hope the guidelines will help increase health insurer and institutional support and recognition of these recommendations.”
Since the last update in 2010, there have been several key advancements in epilepsy which the panel included in the following recommendations for epilepsy centers:
- Epilepsy Monitoring Units (EMU) Setup and Staffing:
- Establish EMUs with 24-hour video-EEG monitoring and trained personnel.
- Continuous Supervision:
- Ensure 24/7 real-time supervision with direct access to healthcare providers.
- Physician Expertise and Maintaining Expertise:
- Employ board-certified physicians in epilepsy, sustaining expertise through sufficient patient volume.
- Emergency Preparedness:
- Equip EMUs for epilepsy-related emergencies with round-the-clock availability of medications and qualified providers.
- Comprehensive Admission Orders:
- Establish standardized admission orders and protocols for seizure management and medication reduction.
- Pediatric-Specific Protocols:
- Implement age-appropriate safety measures and protocols for pediatric epilepsy care.
- Standardized Reporting:
- Provide American Clinical Neurophysiology Society-standardized EMU reports with timely generation and seizure classification.
- Patient Education, Updates, and Discharge Planning:
- Offer pre-EMU admission education, daily updates, and discharge plans inclusive of safe medication resumption.
- Surgical Evaluation, Diagnostic Imaging, and Genetic Testing:
- Ensure timely referrals for surgical evaluation, maintain epilepsy-specific imaging protocols, and incorporate genetic testing.
- Timely Appointments, Telehealth, and Medication Management:
- Optimize scheduling for timely appointments, include telehealth services, and routinely assess medication adherence.
- Care Coordination and Transition Between Pediatric and Adult Care:
- Assign care coordinators, establishing protocols for smooth transitions from pediatric to adult epilepsy care.
- Patient Education, Social Determinants, and Psychosocial Services:
- Offer comprehensive patient education, assess social determinants of health, and provide support service referrals.
“The field has changed significantly since NAEC issued its last guideline update over 10 years ago,” lead author Fred Lado, MD, PhD, NAEC president, and regional director of epilepsy and professor of neurology at Zucker School of Medicine at Hofstra/Northwell in Hempstead, said in a statement.2 “In addition to advances in medicine, there has been a shift toward addressing overall well-being beyond seizure management. This includes care for comorbid conditions like anxiety and depression, enhanced communication between the patient and care team, and addressing health disparities in the epilepsy community. Expanded guidelines are also sorely needed to help centers and hospitals obtain the resources to provide this level of comprehensive care.”
In 1990, NAEC issued its first epilepsy center guidelines and since then has developed new guidelines every decade. The latest guidelines by NAEC are the first to be established on an evidence-informed, consensus-based process. In the absence of robust evidence, the recommendations were formulated based on consensus of the panel, pinpointing areas that require further research. As more research emerges to set practice standards and expand clinical knowledge, authors noted that NAEC will consistently update the guidelines which will over time standardized care for epilepsy centers.
1. Lado F, Ahrens SM, Rike E, et al. Guidelines for Specialized Epilepsy Centers. Neurology. 2024;102(3):e208287. doi: 10.1212/WNL.0000000000208087
2. New guidelines aim to elevate comprehensive care for people with severe epilepsy. News release. Szabo Communications Strategies LLC. Published February 2, 2024. Accessed Februrary 2, 2024. https://www.eurekalert.org/news-releases/1033050?