Epilepsy in Developing Countries Often Goes Untreated

Study in China Shows 40 Percent Have Never Received Treatment

Posted: June 30, 2003

A new study shows that the number of people with epilepsy in rural areas of China and the number who are not adequately treated are even higher than previously estimated.

The study, published in the May 13 issue of Neurology was conducted by the World Health Organization, the International League Against Epilepsy and the International Bureau for Epilepsy as part of the Global Campaign Against Epilepsy.

"Technological advances in recent years have benefited people with epilepsy in the industrialized world, but they have had little impact on the much larger number of people with epilepsy who live in countries with limited resources," said neurologist Jerome Engel, Jr., M.D., Ph.D., of the University of California, Los Angeles. Engel co-chairs the Global Campaign Against Epilepsy and wrote an editorial accompanying the study.

He said that relatively inexpensive efforts such as public education to remove the stigma associated with epilepsy in developing countries and professional training to better identify people with epilepsy could greatly reduce the physical and social effects of the disorder.

For the Chinese study, questionnaires were given door-to-door to a total of 58,806 people in five rural communities. Of those, 869 people were identified as possible cases and were screened by a neurologist. A diagnosis of epilepsy was determined for 387 people.

A total of seven out of every 1,000 people questioned had experienced epilepsy at some point in their lives, and 41 percent of all cases had never received appropriate treatment. The study found that 4.6 out of every 1,000 people had active epilepsy, and 63 percent of those had not received treatment in the week prior to the survey. Active epilepsy was defined as having two or more unprovoked seizures in the past 12 months.

Study author and neurologist Wenzhi Wang, M.D., of the Beijing Neurosurgical Institute said that the lifetime prevalence of epilepsy was nearly 50 percent higher than previously estimated and the "treatment gap," or the difference between the number of people with epilepsy and the number receiving adequate therapy, was more than 30 percent higher than estimated.

"The total number of people with epilepsy in the People's Republic of China is now estimated at almost 9 million," Wang said. "The worldwide prevalence of epilepsy and the treatment gap may also be underestimated. These data show the need for epilepsy to become a high priority in China and around the world. In China, successful treatment of even 60 to 70 percent of cases could provide a productive boost to the nation's economy."

Wang said perceptions about epilepsy may contribute to the treatment gap. "People may not view epilepsy as a treatable condition," he said. "The disorder is stigmatized and people are unlikely to admit they have epilepsy or to know that treatment exists."

Engel said the Chinese study was the first step in a pilot project; other pilot projects associated with the Global Campaign Against Epilepsy are underway in Senegal, Zimbabwe and Argentina. Goals for the pilot projects include evaluating the effectiveness of training programs for health professionals, promoting new attitudes about epilepsy in the community and eliminating preventable causes of the condition. Results from the pilot projects will be used to develop national programs throughout the developing world.