More than 300 specialized epilepsy centers in the United States provide access to the full range of diagnostic and treatment options with the goal of controlling seizures and improving quality of life for people living with epilepsy.
Susan Arnold, M.D.
Secretary/Treasurer, National Association of Epilepsy Centers (NAEC); Adjunct Professor of Pediatric Neurology, Yale University
Epilepsy is one of the most common chronic neurologic conditions worldwide, affecting 3.4 million people in the United States. Epilepsy affects a person’s quality of life and is associated with an increased risk for related physical and mental health problems, and a higher mortality rate than the general population. Seizures can occur at any age, and a new diagnosis of epilepsy has a profound impact on an individual and their family. Among the difficult choices faced is the decision about where and how to pursue medical treatment.
Most often, people begin their epilepsy care with a neurologist in their community. General neurologists have training in seizure diagnosis and treatment, but may not have the expertise of epilepsy center staff. They also do not have access to the full range of diagnostic and treatment options found at specialized epilepsy centers in the United States.
In contrast, epilepsy centers that are accredited by the National Association of Epilepsy Centers (NAEC) have multidisciplinary teams with advanced training in epilepsy care and provide a broad range of diagnostic services and medical, surgical, and dietary therapies. Although the NAEC offers tools to help patients find an epilepsy center, the nearest one may require travel or may have a wait for new appointments. How should someone decide when to seek care from one?
The Epilepsy Foundation, American Epilepsy Society, and NAEC recommend that patients seek evaluation at an epilepsy center if they are:
- Continuing to have seizures despite treatment for more than one year
- Continuing to have seizures despite treatment with two different medications
- Experiencing unacceptable side effects from epilepsy therapy
- Concerned about how epilepsy affects their health and daily life
- Pregnant or want to become pregnant
- Seeking a higher level of epilepsy care
- Interested in learning more about what caused their seizures, or about all potential options to treat or cure their epilepsy
Greater expertise, greater outcomes
In the past, the most common reason for referral to an epilepsy center was the search for better seizure control. Approximately 30% of patients with epilepsy have refractory seizures despite treatment with anti-seizure medications. These individuals may benefit from non-medication therapies offered by centers, including epilepsy surgery, the ketogenic diet, and neurostimulators. Epilepsy surgery includes several safe and effective treatment options that can control or even cure epilepsy. Unfortunately, delays in referral to epilepsy centers mean that not all children and adults who can benefit from this treatment choice will receive surgery. The American Academy of Neurology has even made timely referral to an epilepsy center part of their quality measures for epilepsy care.
Even patients who are not candidates for surgery can benefit from the expertise that epilepsy centers offer in the use of newer antiseizure medications and in selecting the most appropriate therapy. Some seizure types or epilepsy syndromes respond better to specific epilepsy medications and can even be made worse with wrong medicine choice. Epilepsy centers use advanced diagnostic tools, such as genetic testing, specialized brain imaging, or evaluation in an Epilepsy Monitoring Unit, to better understand each patient’s seizures and to select the best treatment option. In some cases, centers may even discover that the diagnosis of epilepsy is incorrect, leading to a more appropriate diagnosis and treatment.
Holistic care for better quality of life
Care in a modern epilepsy center is about more than just seizure control. A multidisciplinary approach means that centers also have resources to improve quality of life and address other ways in which epilepsy impacts a person’s life. This may include addressing cognitive, behavioral, or mental health concerns; pregnancy planning and reproductive health; genetic counselling for individuals with complex epilepsy syndromes; or assisting with overcoming barriers to medication access. Centers also offer educational resources designed to help people with epilepsy and their families throughout their epilepsy care journey.
The NAEC advocates for people with epilepsy by ensuring their voices are heard in setting priorities for epilepsy centers. It recently developed new guidelines for centers, relying on a panel of experts which included people with epilepsy, their caregivers, and the medical professionals who care for them. Through a rigorous accreditation process, the NAEC evaluates epilepsy centers regularly to make sure they meet more than 40 criteria demonstrating that they provide comprehensive services to their patients. It also offers resources and education to centers to help them meet these quality goals. Not everyone needs to be seen in a specialized epilepsy center, but for those who do need a higher level of care, the NAEC is committed to making sure it is available.
