Prior Lake, Minnesota – Epilepsy is a common neurological condition affecting about 1 % of the population but recently released results from a study at the University of Minnesota showed surprising results for Native Americans suffering from the disease. Epilepsy disproportionately affects ethnic minorities, yet relatively little research has been conducted regarding factors and beliefs which impact epilepsy care, particularly in the Native American community. A $10,000 grant from the Shakopee Mdewakanton Sioux Community in June 2008 funded the study whose results were recently released. The study was conducted by the University of Minnesota Medical School’s Department of Neurology and School of Public Health.

“We were concerned about the care that Native Americans who suffer from epilepsy were getting, and we wanted to have accurate information about what was lacking in their care so that we can help them get better medical care. We suspected their care was suboptimal, and we proved that. We came up with recommendations to do something about it,” said Principal Investigator and Neurologist Dr. Miguel Fiol, M.D., with the University of Minnesota’s Medical School and Department of Neurology.

The experience of 55 Native Americans in Minnesota was examined in 23 Native American with epilepsy and 32 Native American without epilepsy in the study entitled: “Comparison Study of Beliefs and Quality of Health Care of Native Americans With and Without Epilepsy.”

The participants were recruited from a Native American Health Clinic, the University of Minnesota Clinic, a community center, and tribal offices. Demographics; epilepsy knowledge; good care barrier perceptions; spiritual/other beliefs; stigma; education; income; and insurance type were studied. The survey asked both groups 38 questions on knowledge, beliefs, and attitudes concerning epilepsy and concerning the health care system, plus additional clinical questions for the affected.

Co-principal Investigator was Dr. Kirk Allison, Ph.D., Program in Human Rights and Health, at the University of Minnesota School of Public Health. Other researchers also participated in the study. The Epilepsy Foundation of Minnesota was also involved.

The information obtained and the intervention lines developed by the team of researchers will be used to educate doctors and other staff on disparity issues and will help structure the U of M Medical School’s revised curriculum. The study will also result in the development of educational materials that will be helpful within clinics and the Native American community. Finally, research findings will be submitted to research journals to benefit others concerned about health disparities in Native Americans across the United States. The precise scientific data obtained will lead to better medical and social care of Native American adults and children with epilepsy.

“One compelling finding was that none of the participants who had epilepsy had full-time work,” said Dr. Fiol. “So that’s 0% compared to 42% of Native Americans without epilepsy.” He continued, “These folks also need help to find access to health care. We found a lot of Native Americans go to the emergency room, and they may not get the best care there. Many of them need to see a specialist, i.e a Neurologist.”

According to the study results, there is a need for action in several areas: education concerning epilepsy stigma, seizure recognition, and prescription drug side effects. Issues with the health care system, knowledge of driving criteria, and the need for employment support are important.

Results

• Native Americans are a small percentage of the population (1.1%), but with regard to epilepsy there is some evidence that there is higher than average prevalence.
• Native Americans also experience notable health disparities in Minnesota. Native focused-clinics and outreach are important.
• For Native Americans with epilepsy:
  • There is a much greater trust barrier, with many believing that they can’t get good health care because they don’t trust doctors and nurses.
  • There is more stigma perception regarding epilepsy at work and in school.
  • 26% drive compared to 63% of Native Americans who did not have epilepsy.
  • 43% knew that the State of Minnesota says to stop driving if you have epilepsy compared to 34% Native Americans who did not have epilepsy.
  • 65% knew what to do if they experienced side effects, compared to 88% Native Americans who did not have epilepsy.

For more information about the study go to www.neurology.umn.edu or call 612-626-7044 or 612-625-9900 #5 or email fiolx001@umn.edu.