IOM Report Calls for Network of Accredited Epilepsy Centers

Pauline Anderson

April 25, 2012

April 25, 2012 (New Orleans, Louisiana) — A new recommendation to create accredited epilepsy centers similar to the current system of designated stroke centers is "fairly dramatic and revolutionary," according to Joseph Sirven, MD, professor and chair, Department of Neurology, Mayo Clinic, Scottsdale, Arizona.

The recommendation is one of 13 included in "Epilepsy Across the Spectrum: Promoting Health and Understanding," a report released by the Institute of Medicine March 30 and discussed during a dedicated session here at American Academy of Neurology (AAN) 64th Annual Meeting.

An epilepsy care network would be akin to accredited networks already in place for stroke and cancer that have successfully streamlined care for these conditions, said Dr. Sirven, who sat on the17-member committee that developed the new report and moderated a discussion of the document during a "hot topics" session here.

Dr. Joseph Sirven

"This would potentially require hospitals or other organizations to pursue epilepsy certification so that patients could choose to obtain services from an epilepsy center that is accredited," he said in an interview with Medscape Medical News. "This would mean that the institution would need to demonstrate some form of quality epilepsy care that is yet to be defined, and also be involved in community education."

Quality Care

Such accredited centers would take a "co-management" approach, said Christi N. Heck, MD, director, Adult Comprehensive Epilepsy Program, Department of Neurology, Keck School of Medicine, University of Southern California, Los Angeles, another discussion participant. She emphasized the need for collaboration of "all providers along the chain" to improve diagnosis and management of epilepsy.

Reports such as this one are rare. Dr. Sirven noted that the Institute has produced few if any reports on medical conditions other than those on brain injuries and spinal cord injuries.

In many ways, epilepsy is a "spectrum" condition, said Dr. Sirven. It spans both ends of life; those affected can be very young or very old "and everything in between." Indeed, children and older adults are the fastest-growing segments of the epilepsy population.

As well, epilepsy can vary in type, cause, and severity. At one extreme, it can be life-threatening, but at the other, it may involve only 1 or 2 seizures ever.

Epilepsy is also a spectrum disorder in that it often involves not just seizures but also cognitive or psychiatric problems, said Dr. Sirven. "Seizures may not be the biggest part of epilepsy, and may not be the most problematic."

Greg Holmes, MD, a pediatric epileptologist, past president of the American Epilepsy Society (AES) and chair of neurology at Geisel School of Medicine at Dartmouth, Hanover, New Hampshire, agreed that comorbidity is a serious issue with epilepsy management. "Seizures are often just the tip of the iceberg," he said.

Referring to the condition as "epilepsies" rather than "epilepsy" addresses this idea that it's a spectrum disorder, said Frances E. Jensen, MD, current AES president.

The report was needed to address the lack of a national strategy for epilepsy management; to close the gaps in diagnosis and referrals for epilepsy, especially in underserviced and rural areas; to reduce the stigma linked to this condition; and to boost surveillance and data collection strategies.

The report was prepared in a relatively short time. The first meeting of stakeholders was held in early 2010, and the report was complete at the beginning of this year. Vision 20-20 refers to the group of 24 organizations that collaborated to produce the report.

Road Map

According to Dr. Jensen, the report is a "benchmark" and "a road map to move forward" in the field of epilepsy. The condition affects some 2.2 million Americans, with roughly 150,000 new cases being diagnosed in the United States each year.

Epilepsy is the fourth most common neurologic disorder, after migraine, stroke, and Alzheimer's disease. About 1 in 26 people will be affected by the condition at some point in their life, said Dr. Jensen.

The almost 400-page document, produced at a cost of $1.5 million, is available on the Institute's Web site.

Along with better access to diagnosis and treatment, other themes of the report include the common yet complex nature of epilepsy, the serious impact of epilepsy on quality of life, the lack of a "whole-patient perspective" from community services and programs, and the need for improved professional education.

"We're really stepping up the game on education, for physicians, and for everyone who touches the patient," with an emphasis on the spectrum nature of epilepsy, said Dr. Sirven.

In terms of training in the field of epilepsy, "we can't use the same technologies as we did 20 years ago," said Dr. Holmes. He added that "best practices" have to be incorporated "at all levels of education."

Much of the current information on epilepsy is "spotty and inconsistent" said Dr. Holmes. The report calls for updating the current "patchwork" of surveillance activity, establishing screening protocols for comorbid conditions such as depression and anxiety disorders, and timely referral to an epileptologist in cases of persistent seizures.

In the area of prevention, the committee members call for efforts to reduce epilepsy's known risk factors, which include traumatic brain injury, stroke, and brain infections.

Some recommendations are directed at the community and address such areas as raising awareness, educating patients and families, and eliminating the stigma attached to epilepsy. Although there's no recommendation to change the name "epilepsy" to something that has a more positive connotation, committee members did discuss a name change "at length," said Dr. Sirven.

The next step is for the private and public sector organizations that make up Vision 20-20 to "set out the benchmarks" that will set the stage for the report's recommendations to be carried out, said Dr. Sirven.

The report was sponsored by US Department of Health and Human Services, Administration on Developmental Disabilities, Center for Devices and Radiological Health, Center for Drug Evaluation and Research, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Center for Chronic Disease Prevention and Health Promotion, National Center on Birth Defects and Developmental Disabilities, National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, National Institute on Aging, Office of the Assistant Secretary for Health, Office on Women's Health, and Office of the Assistant Secretary for Planning and Evaluation; and by members of the Vision 20-20 collaborative: American Epilepsy Society, Citizens United for Research in Epilepsy, Dravet.org, Epilepsy Foundation, Epilepsy Therapy Project, Finding a Cure for Epilepsy and Seizures, Hemispherectomy Foundation, International League Against Epilepsy, National Association of Epilepsy Centers, Preventing Teen Tragedy, Rasmussen's Encephalitis Children's Project, and Tuberous Sclerosis Alliance.

American Academy of Neurology (AAN) 64th Annual Meeting. Presented April 23, 2012.

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