The National Association of Epilepsy Centers (NAEC) recently published updated care guidelines in the journal Neurology. The NAEC also has announced the updated guidelines on its website. The NAEC initially published the guidelines for epilepsy centers in 1990 and last updated them in 2010.
The experts wrote, “Since that update, epilepsy care and the science of guideline development have advanced significantly, including the importance of incorporating a diversity of stakeholder perspectives such as those of patients and their caregivers. Currently, despite extensive published data examining the efficacy of treatments and diagnostic testing for epilepsy, there remain significant gaps in data identifying the essential services needed for a comprehensive epilepsy center and the optimal manner for their delivery.”
Fred Lado, MD, PhD, NAEC president, guideline panel co-chair, and regional director of epilepsy and professor of neurology at Zucker School of Medicine at Hofstra/Northwell in Hempstead, New York, stated, “The field has changed significantly since NAEC issued its last guideline update over 10 years ago. 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.”
The recommendations were informed by an evidence review and reflect the consensus of a multidisciplinary expert panel of 41 stakeholders with diverse expertise. The updated guidelines include 52 recommendations across many services that are critical to high-quality epilepsy centers, including inpatient evaluation, therapeutic options, and outpatient chronic disease management.
The experts wrote, “This is exhibited in a greater emphasis on multidisciplinary care conferences, screening for comorbidities of epilepsy, and providing access to other specialty services in addition to the core epilepsy center components of outpatient care, diagnostic procedures, and epilepsy surgery.”
The guidelines also identify the significance of multidisciplinary care teams in coordinating the efforts of different specialists working collaboratively to diagnose and treat patients.
For the first time, the NAEC guidelines recommend that epilepsy centers should:
• Provide genetic testing and counseling
• Offer more education and communication for patients
• Give more attention to special-needs populations
• Utilize a care coordinator who organizes and facilitates multidisciplinary care
• Provide mental health screening
• Adopt measures to address health disparities and inequities among the epilepsy patient population.
In the press release, Susan Arnold, MD, guideline panel co-chair and a pediatric epileptologist at Yale University School of Medicine, stated, “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.”
Dr. Arnold added, “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 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.”
“When patients feel their treatment options are limited, they don’t have to accept ‘good enough.’ Epilepsy centers offer hope,” declared Dr. Arnold. “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.”
The NAEC also noted that as additional research becomes available, practice standards become established and clinical knowledge expands, and that it will update the guidelines accordingly.
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