SUDEP-MATTERSResearch shows that people with epilepsy have a 27-fold greater risk of sudden death compared to those without the disorder. Many of these deaths could be prevented, however, according to some of the nation’s leading epilepsy experts writing in the journal Neurology.

The experts assert that the death toll could be reduced through greater identification of epilepsy as a cause of death and by educating the public more effectively about the disease’s life-threatening dangers. They further call for a broad public health campaign and improved cause-of-death reporting.

“The public does not know that uncontrolled or ineffectively managed epilepsy leads to more than 5,000 unexpected deaths each year,” said article lead author Orrin Devinsky, M.D., a professor of neurology, neurosurgery and psychiatry and director of the Comprehensive Epilepsy Center at New York University (NYU) Langone.

“The reason why is because most of these deaths are not accounted for as a result of epilepsy. Instead, they are classified as deaths resulting from other conditions that are directly or indirectly the result of epilepsy, such as heart disease, obesity, addiction, and psychiatric disorders. This practice has to end.”

Devinsky and his co-authors also conclude that many sudden unexpected deaths from epilepsy, or SUDEP, can be prevented by better educating patients, families, and the general public of its dangers — particularly epilepsy-induced seizures — and the benefits of individualized treatments.

“If people better understand the seriousness of epilepsy and are better educated about its risks and how to improve seizure control, we could save thousands of lives,” said Devinsky.

Writing in the article, the researchers say that the inability to accurately quantify epilepsy-related deaths is a major obstacle toward improving care, as is the difficulties in comparing data from different studies.

To drive home this point, they looked at two studies: the first of adults with epilepsy who were covered under the Ohio Medicaid system, and another study investigating childhood-onset epilepsy in Finland.

Devinsky says the results were striking: in the Ohio study, SUDEP was identified in 0.01 cases per 1,000 patient years of life; the Finnish study accounted for 2.6 cases per 1,000 patient years.

The experts point out that the most significant factor in these studies was in the different methods used by each country in determining the cause of death. The Ohio study only relied on information from death certificates, while the Finnish study reviewed clinical records and detailed death investigations, including 70 percent of the studied cases undergoing autopsy, a more common practice in Finland than in the U.S.

The underestimation of epilepsy as a cause of death is even greater among older adults, the authors say. For example, even though epilepsy disproportionately affects people age 65 and over, autopsies are rarely performed in this age group. When autopsies are conducted, even if there is evidence that a seizure led to death, the death is more often categorized as “cardiovascular,” stemming from a heart attack or arrhythmia.

The authors also conclude that thousands of deaths from drowning, car and bike accidents, pneumonia from aspiration, alcohol withdrawal, falls, burns, suicide, and sudden unexpected death can be attributed to epilepsy. Furthermore, low socioeconomic status and minority groups, and those with comorbid psychiatric conditions, are also at especially high risk for epilepsy-related deaths.

The experts explain that many successful public health campaigns have helped lower stroke-related deaths as well as deaths from sudden infant death syndrome (SIDS) and fires. Adopting similar strategies could help control seizures and save lives.

“The public needs to be made aware of the potentially lethal consequences of seizures and that in many cases, simple measures can help to prevent them,” Devinsky said.

Efforts are currently underway by the Centers for Disease Control and Prevention and National Institutes of Health, but we need much more, he added.

“We really need to underscore this in public service announcements and other outreach efforts, just like we have done for stroke, and legislators need to be brought on board.”

The article was supported by Finding A Cure for Epilepsy and Seizures (FACES).

Source: NYU Langone Medical Center
Written by: Traci Pedersen of