The National Association of Epilepsy Centers (NAEC) has published the first updated guidelines for specialized epilepsy centers in over a decade. The recommendations provide a comprehensive framework for delivering high-quality care for the estimated 3.4 million people in the United States living with epilepsy. These guidelines were published in Neurology.
The NAEC recruited a panel of 41 stakeholders with diverse backgrounds, including physicians, patients, and caregivers. Panelists performed a comprehensive and systematic search for relevant scientific literature to evaluate the latest research and evidence in epilepsy care and reached a consensus on 52 recommendations spanning a range of services that make up high-quality epilepsy care.
The updated recommendations include 4 categories: inpatient services, surgery, diagnostic evaluation, and outpatient services. The recommendations advise specialized epilepsy centers
- to offer genetic testing and counseling
- provide more education and communication for patients
- give greater attention to special-needs populations,
- employ a care coordinator to organize and facilitate multidisciplinary care
- provide mental health screening, and address health disparities and inequities.
This reflects a shift towards addressing overall well-being beyond seizure management, including care for comorbid conditions like anxiety and depression, enhanced communication between the patient and care team, and addressing health disparities in the epilepsy community.
Dr. Susan Arnold, guideline panel co-chair and a pediatric epileptologist at Yale University School of Medicine said, "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."
The NAEC executive summary of guidelines, including the complete list of 52 recommendations is available at https://www.neurology.org/doi/10.1212/WNL.0000000000208087