Boston—Although the diagnosis and treatment of epilepsy have advanced substantially in recent years, this progress has not reached most of the 50 million people around the world who have the seizure disorder, including many of the nearly 3 million in the United States. This treatment gap was a focus of attention at the 63rd Annual Meeting of the American Epilepsy Society, held here in December. “Many patients do not receive state-of-the art care, and in some regions of the world, 90% of patients with epilepsy are not on any medication,” said Steven Schachter, MD, professor of neurology at Harvard Medical School, in Boston, and president of the American Epilepsy Society. The heavy toll imposed by undiagnosed, untreated, and suboptimally treated epilepsy is significant, diminishing quality of life and raising risk of disability and death for many individuals, he said. Gretchen Birbeck, MD, MPH (second from right), and her epilepsy care team treat patients in Zambia with epilepsy and work to expand neurological care in the community. Developing nations struggle Patients with epilepsy who live in developing countries face considerable struggles to obtain care that is continually available, affordable, and culturally acceptable. “In many regions, epilepsy is misunderstood, feared, hidden, and stigmatized,” said Jerome Engel Jr, MD, director of the University of California at Los Angeles' Seizure Disorder Center. As the director of the epilepsy care team at Chikankata Health Services, in Zambia, Africa, Gretchen Birbeck, MD, MPH, has witnessed barriers to epilepsy care at every level—individual, family, community, health care system, and national policy. Most prevalent are stigma and lack of knowledge about the disease. Other significant obstacles include poor transportation infrastructure, preference for traditional healers, and a shortage of medical facilities, personnel, and drugs. On a broader scale, government policy in Zambia views epilepsy as grounds for divorce, employment termination, and various restrictions (such as limits on driving). Birbeck advocates for improving individuals' and families' socioeconomic status and education to reduce stigma and misconceptions, collaborating with village leaders and traditional healers to provide appropriate epilepsy care, improving access to affordable medications, and promoting legislation against discrimination. Altruistic incentives are not the only reasons to attempt to improve epilepsy care in developing countries, Engel noted. “The world is smaller, and our health depends on global health,” he said. In addition, because an increasing number of patients in the United States come from developing nations, physicians must become familiar with cross-cultural issues. Engel also stressed that improving health care in countries with limited resources could provide insights into how to make health care more cost-effective at home. “Developing world conditions are not limited to developing countries; they exist here too,” he said. Birbeck agreed. “Are the issues and challenges facing persons with epilepsy in the US vs Zambia so very different?” she asked. Both nations, she said, need to address such factors as access to education, good health care services, and affordable medications; civil liberties and human rights; and stigma. Gaps in the united states While most patients with epilepsy in the United States receive some form of therapy for their condition, there are racial, ethnic, and socioeconomic disparities in access to treatment, particularly surgery, said Schachter. Professional guidelines recommend that patients be referred to surgical epilepsy centers after failing appropriate trials of first-line antiepileptic drugs, a point typically reached within 2 years. At the conference, researchers from the University of California at Los Angeles reported an average gap of 17 years between the diagnosis of epilepsy and presurgical evaluation at their specialized epilepsy center. Investigators at the University of Minnesota in Minneapolis who analyzed information from the Nationwide Inpatient Sample, the largest inpatient care database in the United States (http://www.hcup-us.ahrq.gov/nisoverview.jsp), found that among patients with intractable epilepsy, black patients were 44% less likely than those of other races to undergo surgery. Neurology experts say that intractable seizures and the adverse effects of epilepsy and its treatment are too often accepted when they might be reduced or eliminated with improvements in diagnosis and more appropriate treatment choices. “Even with the plethora of epilepsy therapies now available, the Centers for Disease Control and Prevention estimates that at least 45% of people with epilepsy here in the United States continue to experience seizures,” said Schachter. “Complete freedom from seizures is not a possibility for everyone who has epilepsy, but it is important for patients with continuing seizures and their health care providers to make every effort toward that goal,” he added. Primary care physicians, who are often the first clinicians to see individuals with epilepsy, play an important role in ensuring that patients receive appropriate care. Schachter also urged scientists to intensify their investigations into more effective therapies for patients with epilepsy. “We need new drugs for patients who don't benefit from current treatments and therefore can't live up to their full potential,” he said.
JAMA – American Medical Association
Published: Feb 3, 2010