Epilepsy care goal shifting to no seizures, not just fewer ones
■ CDC data show this common disorder is undertreated, and many experts suspect its nature may interfere with access to care.
By Victoria Stagg Elliott — Posted Sept. 8, 2008
Epilepsy is not that unusual, and many who have this condition still experience seizures despite the availability of effective treatment.
That's a take-home message from a paper in the Aug. 8 Morbidity and Mortality Weekly Report. Centers for Disease Control and Prevention researchers analyzed data from the 2005 Behavioral Risk Factor Surveillance System and found that 1.65% of the population had been told by a physician that they had epilepsy or a seizure disorder. Of this group, 23.1% had experienced at least one seizure in the past three months.
"This high number of people having seizures is of concern," said David J. Thurman, MD, MPH, one of the authors and a medical epidemiologist at the CDC's National Center for Chronic Disease Prevention and Health Promotion.
Seizures can be disruptive to patients' lives as well as their health. Of those interviewed for the study, 11.4% reported that epilepsy limited their activities in the past month. Another 13.8% said the limitation was slight or moderate. Even so, experts say better control is possible. The goal of treatment is increasingly shifting to a no-seizure position.
"There's a large number of people with epilepsy, and not all of them are adequately treated," said Jacqueline French, MD, professor of neurology at New York University Langone Medical Center and an American Academy of Neurology spokeswoman. "We know that having any seizures leads to a reduced quality of life that needs to be addressed with treatment."
The no-seizure goal may not be possible with every patient, experts noted. But primary care physicians are encouraged to refer as appropriate, or change medication regimens to achieve that goal.
To increase overall awareness that living without seizures is a possibility, the Epilepsy Foundation in August launched an educational Web site, NoMoreSeizures.org.
"Many people with epilepsy assume this is as good as it gets. They are not aware there are other treatment options and believe they just have to live with it," said Eric R. Hargis, president and CEO of the organization. "Certainly not everyone will achieve the goal of no seizures and no side effects. But, with our basic education and empowerment messages, we're trying to increase the number of those who can."
Many experts suspect, though, that this issue may need more than awareness to solve. Some of the social baggage that can accompany epilepsy may be interfering with the ability of patients to access care. The paper also reported that adults with this condition were more likely than those without it to be in fair or poor overall health, be unemployed or unable to work, and live in households with annual incomes below $25,000.
"There's less now, but there's still some stigma involved in having epilepsy. Patients can have a terrible time getting a job," said Kimford Meador, MD, professor of neurology at the University of Florida in Gainesville. He also is a member of the Epilepsy Foundation's professional advisory board, although he was speaking personally.
This situation means that patients may not be able to cover the costs of medical care. The number of those without insurance was similar for those without epilepsy, but 23.7% of those with a history of the disorder said they had not been able to see a doctor within the past year because of cost. Only 13.4% of those without epilepsy said the same.
This paper found that 34.9% of adults continuing to have seizures had not seen an epilepsy specialist within the past year, and primary care physicians said that they sometimes have problems getting their patients an appointment to see one.
"We do believe in the team approach," said James King, MD, of Selmer, Tenn., who is president of the American Academy of Family Physicians. "Getting patients to a specialist would be great, but not enough [of them] work where I practice. I'm 45 miles from the nearest neurologist, and he doesn't even take Medicaid." Dr. King sees three to five patients a week with seizure disorders.
This paper also found that this patient group was at higher risk for obesity, inactivity and smoking. But, no significant differences in rates of this syndrome by gender, race or ethnicity were found.