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New IOM Epilepsy Report Identifies Major Gaps in Diagnosis, Treatment and Public Awareness


Dr. Harvey V. Fineberg: “This is a problem that is remarkably hidden for such a visible illness.”

WASHINGTON, DC— When it comes to helping epilepsy patients, there is much room for improvement — specifically, with providing timely referrals, correct diagnoses, and access to treatment, claims a comprehensive new report from the Institute of Medicine (IOM).

The IOM committee, which wrote the report, “Epilepsy across the Spectrum: Promoting Health and Understanding” — discussed here at a news briefing on March 20. The new report addresses the public health dimensions of epilepsy, not biomedical research. “This is a problem that is remarkably hidden for such a visible illness,” said IOM President Harvey V. Fineberg, MD, PhD, adding that epilepsy has been “too long neglected as a public health problem.”

Epilepsy is the fourth most common neurological disorder in the United States — after migraine, stroke and Alzheimer disease. An estimated 2.2 million Americans have epilepsy, with 150,000 new U.S. cases diagnosed every year; about one in 26 people will develop epilepsy at some time in their lives. The estimated US annual direct medical care cost of epilepsy is $9.6 billion, according to the report.


said epilepsy centers are evolving from voluntary self-identification to accreditation.


Improving health professionals' knowledge about epilepsy was one of the IOM committee's 13 specific recommendations, and it directly addresses the American Academy of Neurology (AAN). The recommendation specifically calls for the AAN and the American Epilepsy Society (AES) to: define the essential knowledge and skills for the range of health professionals who care for patients with epilepsy and their families; conduct surveys of health professionals to identify knowledge gaps; evaluate the efficacy of existing educational sources; develop interactive epilepsy educational tools; ensure that educational materials are up-to-date; explore and promote opportunities to expand innovative interdisciplinary educational approaches; and disseminate educational materials and tools widely to health professional educators.

Another IOM committee recommendation calls for the AAN and the AES to lead a collaborative effort with other relevant professional organizations to improve the early identification of epilepsy and its comorbid health conditions by developing and validating screening tests for early identification of epilepsy in at-risk populations — people with developmental disabilities, mental health conditions and those who have had a stroke, TBI or brain tumor. In addition, the IOM call for establishing and disseminating a standard comorbidities screening protocol for people with epilepsy, and establishing and disseminating a screening tool for early identification of patients with persistent seizures that would lead to earlier referral to an epileptologist.

The IOM committee concluded that one way to close gaps in diagnosis and treatment for patients with epilepsy is to establish independent external accreditation of U.S. epilepsy centers and an epilepsy care network. Currently there are 166 voluntarily self–designated specialty epilepsy centers in the United States, according to data from the National Association of Epilepsy Centers (NAEC). Of the Americans who have some form of epilepsy, NAEC estimates that about 30 percent do not have adequate seizure control and suffer from refractory epilepsy. Of these, only about 22 percent are seen at these specialized centers annually, indicating that less than a quarter of patients with uncontrolled seizures see an epilepsy specialist.


Asked by Neurology Today if the committee believes accreditation of epilepsy centers by an independent body will improve epilepsy care, IOM committee member Christianne N. Heck, MD — director of the Adult Comprehensive Epilepsy Program at the University of Southern California, Los Angeles — said yes. “We had a lot of discussion on this,” she said, noting that accredited centers could help to ensure discipline and consistency of care across the country and bolster referrals for patients who need specialists. She said that while the committee did not feel it was their place to set accreditation criteria, “there are a lot of models out there,” such as models for stroke centers and cancer centers.

A statement distributed by NAEC after the news briefing states that “NAEC pledges to work with the entire epilepsy community” to address the IOM accreditation recommendation.


said the IOM panel had discussed the fact that accredited epilepsy centers could ensure consistency in care for patients nationwide but did not feel it was their place to set accreditation criteria.

“We have long thought about accreditation,” said David M. Labiner, MD, NAEC president and professor of neurology at the University of Arizona College of Medicine, after the news briefing. He told Neurology Today that accreditation would ensure that a consistent set of standards would be followed at every center.

“Epilepsy centers don't only have to deal with refractory patients,” he said, noting that such centers offer comprehensive care and can be helpful to patients across the spectrum of epilepsy.

IOM committee member Joseph I. Sirven, MD — professor and chair of neurology at the Mayo Clinic College of Medicine in Scottsdale, AZ — told Neurology Today that epilepsy centers are evolving from voluntary self-identification to accreditation. At Mayo, which has a NAEC-designated epilepsy center, he said that specific services include continuous monitoring in an inpatient environment; classifying the epilepsy; characterizing the seizures; and presurgical evaluation.

NINDS Director Story Landis, PhD, commented that the report is “a wonderful summary that will be helpful to patients and their families.” She praised the recommendation on independent external accreditation of epilepsy centers, and the emphasis on referral to specialists when needed.

A written statement from epilepsy health providers — including the AAN — in response to the IOM's new report said: “As clinicians and researchers most directly involved in epilepsy care, we are pleased and impressed with the depth of the IOM study and specificity of its evidence-based recommendations.”

“The IOM report confirms what we find in our practice,” they wrote. ”Optimal treatment for epilepsy is so complex from a medical perspective as to present a significant challenge. Yet it must be tailored to each patient.”

At its annual meeting in April, the AAN sponsored a panel discussion on the IOM Report. For video highlights and a report from the session, see the next issue of Neurology Today. •



  • Validate and implement standard definitions and criteria for epilepsy case ascertainment, health care and community services use and costs, and quality measurement
  • Continue and expand collaborative surveillance efforts
  • Develop and evaluate prevention efforts for epilepsy and its consequences
  • Improve the early identification of epilepsy and its comorbid health conditions
  • Develop and implement a national quality measurement and improvement strategy for epilepsy care
  • Establish epilepsy center accreditation and an Eapilepsy Care Network
  • Improve health professionals' education about the epilepsies
  • Improve delivery and coordination of community services
  • Improve and expand educational opportunities for patients and families
  • Provide information to media to improve awareness and eliminate stigma
  • Coordinate public awareness efforts
  • Continue and expand Vision 20-20 working groups and collaborative partnerships
  • Engage people with epilepsy and their families in education, dissemination, and advocacy for improved epilepsy care and services


• Committee on the Public Health Dimensions of the Epilepsies, Board on Health Sciences Policy, Institute of Medicine. Epilepsy across the Spectrum: Promoting Health and Understanding. National Academies Press, Washington, DC 2012. The report may be accessed online at