National Association of Epilepsy Centers issues updated care guidelines

Key takeaways:

• Guideline chairs formulated 52 recommendations for epilepsy care.
• The process marked the first time the NAEC sought input beyond neurology realm.

For the first time since 2010, the National Association of Epilepsy Centers has issued revised care guidelines, with a focus on precision in patient evaluation, diagnostics and multidisciplinary intervention as needed.

“While prior guidelines focused on inpatient care and surgery, [National Association of Epilepsy Centers] recognized that high standards for outpatient care are equally essential,” Fred Lado, MD, PhD, president of the National Association of Epilepsy Centers, regional director of epilepsy and professor of neurology at Zucker School of Medicine at Hofstra/Northwell, told Healio in an email regarding the update published in Neurology. “Both our inclusive, evidence-based process involving the entire epilepsy community and the breadth of the guidelines highlight the critical, multidisciplinary, comprehensive epilepsy care that our member centers provide.”

The guidelines, initially set forth by the National Association of Epilepsy Centers in 1990, were last updated in 2010. Since then, advancements in the field as well as the science of guideline development necessitated a change in the review process, specifically in the incorporation of diverse stakeholder perspectives such as those of patients and their caregivers.

The latest review process attempted to address gaps in identifying essential services for comprehensive care as well as the continuum of care, to go along with an ever-growing body of published data on the safety and efficacy of treatment and diagnostics.

A panel of 41 individuals from a range of positions across the specialty engaged in a systematic literature search to inform the guideline review process, returning 5,937 relevant studies from which 197 articles were retained. The panel evaluated data from the selected studies and drafted its recommendations following the consensus-based statement process, which conformed with international standards.

They eventually forwarded 52 recommendations that were divided among necessary services provided by specialized epilepsy centers: inpatient and outpatient services, surgery, evaluation and diagnostics including epilepsy monitoring unit care, neuropsychology, imaging and genetics.

Among the recommendations in the latest set of guidelines are:

• all epilepsy centers should have round-the-clock, real-time supervision of video electroencephalography studies in epilepsy monitoring units;
• all EMUs should regularly inform patients and caregivers of key evaluation findings and allow for discussion of changes in care plans;
• all surgical centers need to screen for drug-resistant epilepsy and employ a multidisciplinary approach to pre, during and post-surgical care;
• all epilepsy centers should possess the ability for genetic testing and employ neuropsychological professionals to properly evaluate patients of all ages to assess whether presence of neurocognitive symptoms may prevent surgery;
• all centers should allow for patients with a range of special needs and provide counseling related to contraception and pregnancy.

“By outlining everything centers need to provide comprehensive care, NAEC hopes the guidelines will help centers advocate for the resources they need and encourage insurers to provide access to a broad set of services,” Lado told Healio. “Over time, these guidelines will inform NAEC’s accreditation criteria.”