Investigators found a significantly higher incidence and prevalence of epilepsy among Medicaid enrollees, particularly men, people over 65, African Americans, and in people with pre-existing disability and/or co-morbid conditions. In a second study they found that Medicaid patients with epilepsy whose seizures were uncontrolled despite medications were far less likely to receive video-EEG and surgical intervention than those with private insurance.
DR. KITTI KAIBORIBOON: “The higher incidence and prevalence of epilepsy among the Medicaid population was not unexpected because they comprise the poorest and sickest population in the US and they tend to have a higher prevalence of chronic diseases that are risk factors for epilepsy. But poor people with epilepsy are not receiving necessary medical care.”
Researchers at Case Western Reserve University School of Medicine have documented a higher incidence and prevalence of epilepsy among people enrolled in Medicaid programs, particularly those with lower socioeconomics status, compared with the general population. This trend follows a disturbing difference in access to specialized care for hard-to-treat patients in poorer communities, according to two new epidemiological studies presented at the American Epilepsy Society annual meeting earlier this month.
“The higher incidence and prevalence of epilepsy among the Medicaid population was not unexpected because they comprise the poorest and sickest population in the US and they tend to have a higher prevalence of chronic diseases that are risk factors for epilepsy,” Kitti Kaiboriboon, MD, assistant professor of neurology at Case Western Reserve University School of Medicine and lead author of the two studies, wrote in an e-mail to Neurology Today. “But poor people with epilepsy are not receiving necessary medical care. These are important policy issues. We need to improve access to care. We hope these data drive change.”
While scientists have documented higher numbers of epilepsy patients in poorer countries than in developed countries, he said that no one has looked at the incidence of epilepsy in a Medicaid population in the United States.
To assess prevalence and incidence, Dr. Kaiboriboon and his colleagues conducted a retrospective study of Ohio Medicaid insurance claims over a 15-year period between 1992 and 2006. A person was identified as having epilepsy if he or she sought medical care for a seizure disorder two separate times or had more than three claims for treatment for convulsions and at least two claims for antiseizure medicine. Each claim had to be more than a month between visits. When they identified a person they made sure that he or she did not have a claim in the five-year period leading up to the diagnosis. They also pulled data on pre-existing conditions, including brain tumors, depression, developmental disorders, migraine, stroke, traumatic brain injury, and schizophrenia.
“We followed about 80,478 people for approximately 15 years; 1,608 of them developed epilepsy,” Dr. Kaiboriboon wrote in an e-mail to Neurology Today. If you follow 100,000 people for one year or 10,000 people for 10 years, that suggests an incidence of 3.6 new cases of epilepsy per 1,000 person-years of exposure or 360 cases per 100,000 person-years, he explained.
The prevalence of epilepsy was 13.2 cases per 1,000 people, Dr. Kaiboriboon said. He noted the data on incidence and prevalence of epilepsy in the general population varies, but he cited a Neurology 2011 meta-analysis that reported a median incidence of epilepsy of 5.4 cases per 1,000 person-years (or 50.4 cases per 100,000-person years, and a May 2010 report in Epilepsia reported a median prevalence of 4.9 cases per 1,000 people.
The incidence and prevalence were significantly higher in men, in people over 65, in African-Americans, and in people with pre-existing disability and/or co-morbid conditions. The most common pre-existing co-morbid conditions in epilepsy patients were depression, developmental disabilities, and stroke, whereas people with brain tumor, TBI, and stroke had the highest risk of developing epilepsy, Dr. Kaiboriboon said.
THE INSTITUTE OF MEDICINE report, issued in March, addressed recommendations for improving access to epilepsy services and the quality of care, among other areas. For more about the report, see the Neurology Today story, “New IOM Epilepsy Report Identifies Major Gaps in Diagnosis, Treatment and Public Awareness”: http://bit.ly/V8vmyQ
In the second study, the researchers focused on disparities in access to specialized epilepsy care. They found that Medicaid patients with epilepsy whose seizures were uncontrolled despite medications were far less likely to receive video-EEG and surgical intervention than those with private insurance, even if it was the only treatment that might reduce the frequency and severity of their seizures. About a third of epilepsy patients are considered refractory for treatment. Without effective seizure control, they can't work or drive a car and they are at higher risk of dying, said Dr. Kaiboriboon.
The investigators collected and analyzed data from several public databases — the California State Inpatient Sample, the State Ambulatory Surgery Database, and the State Emergency Department Database — that collectively provided information on hospital discharges, ambulatory surgeries, and emergency room visits — between 2005 and 2009. They wanted to see who received video-EEG or surgery, two procedures that are commonly used in hard-to-treat epilepsy patients. They used information from the National Association of Epilepsy Centers to locate Comprehensive Epilepsy Centers in California.
They counted 195,166 adults with epilepsy; 4,707 of them had video-EEG monitoring and 779 had undergone surgery during the five-year study period. According to co-investigator Nicholas Schiltz, a PhD candidate and research analyst in the Population Health and Outcomes Research Core in the department of epidemiology and biostatistics at Case Western, uninsured individuals were 84 percent less likely to have video-EEG monitoring and 95 percent less likely to have surgery compared with those with privately insurance. Medicaid patients were 35 percent less likely to have video-EEG monitoring and 62 percent less likely to have surgery. African-Americans were 46 percent less likely to have video-EEG monitoring and 78 percent less likely to have surgery compared with whites.
Part of the problem, the investigators said, is that there are not enough Comprehensive Epilepsy Centers with specialists who are trained at helping patients whose seizures are not helped by medications. California has 16 epilepsy centers but they are concentrated in only six counties. There are only 166 in the country.
They did find that patients who lived in areas where there is access to these centers were more likely to have access to these services.
“This is a call for neurologists to refer their difficult-to-treat patients to epilepsy centers outside of their areas,” said Dr. Kaiboriboon. “We know that surgery is effective and safe and these findings are telling us that patients are not being referred for specialized care that they need to control their seizures.”
Commenting on the new data, Jacqueline French, MD, professor of neurology at the NYU Comprehensive Epilepsy Center, said: “This is an important study that highlights a very high rate of epilepsy among the poor. There are a number of reasons why this might be the case, including the fact that people with epilepsy may be unable to work. Therefore it is difficult to determine whether the Medicaid population is at more risk for epilepsy, or the epilepsy population is at risk for being on Medicaid.”
Access to care is a difficult issue, and hopefully more global solutions will become available, she pointed out. “Many epilepsy centers do see patients with all insurance plans, including Medicaid. The Institute of Medicine report on epilepsy [“Epilepsy Across the Spectrum: Promoting Health and Understanding”], which was issued in the spring, addressed many of these issues, including the issue of increasing patient awareness that specialty epilepsy care is available. Work is ongoing in these areas,” said Dr. French.