Comprehensive care for people with severe epilepsy, guidelines to elevate care

The National Association of Epilepsy Centers (NAEC) has developed updated guidelines that outline the comprehensive services and resources epilepsy centers should provide to improve quality of care for people whose epilepsy is not well-controlled.

An Executive Summary of the 2023 Guidelines for Specialized Epilepsy Centers: Report of the National Association of Epilepsy Centers Guideline Panel was published online on February 2, 2024, in Neurology®, the medical journal of the American Academy of Neurology. The complete NAEC guidelines are published as an eAppendix on the journal’s website.

Epilepsy is one of the most common chronic neurologic conditions worldwide, with an estimated prevalence of 3.4 million in the United States. The condition, which causes recurring seizures, can be debilitating and life-threatening. It is associated with decreased quality of life and far-reaching socioeconomic implications.

About 30 percent of people with epilepsy have seizures that do not respond to medication. Uncontrolled seizures affect all aspects of life, such as the ability to learn or live independently. For these individuals, and those experiencing unacceptable side effects from antiseizure medications, epilepsy centers can provide a more personalized level of care that improves a patient’s total well-being.

The 2023 guidelines include 52 recommendations that span the range of services that should be part of high-quality epilepsy centers, including inpatient evaluation, therapeutic options, and outpatient chronic disease management. The guidelines recognize the importance of multi-disciplinary care teams in coordinating the effort of different specialists working together to diagnose and treat patients.

For the first time, the guidelines recommend centers should offer genetic testing and counseling.

provide more education and communication for patients.

give greater attention to special needs populations.

employ a care coordinator who organizes and facilitates multidisciplinary care.

provide mental health screening (anxiety, depression, and learning difficulties are much more common in people with epilepsy than the general population).

address health disparities and inequities among the epilepsy patient population.

The recommendations were informed by an evidence review and reflect the consensus of a multidisciplinary panel of 41 stakeholders with diverse expertise, including patient and caregiver representatives, EEG technologists, nurse practitioners, social workers, neurosurgeons, neuroradiologists, and others who support epilepsy center care.

Reference: New guidelines aim to elevate comprehensive care for people with severe epilepsy; Neurology; DOI: 10.1212/WNL.0000000000208087