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Patients Unaware of Sudden Unexpected Death in Epilepsy

Update Date: Oct 16, 2014 10:40 AM EDT
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Many caregivers and patients suffering from seizure disorders are unaware of a condition known as sudden unexpected death in epilepsy (SUDEP), a new study found. The researchers reported that medical professionals could help increase awareness about SUDEP by discussing it with their patients and family members.

"When someone with epilepsy dies suddenly we want to understand why. Our research calls attention to SUDEP and provides important knowledge to help neurologists have open discussions with patients, especially those at greatest risk of epilepsy-related death," Dr. Barbara Kroner, an epidemiologist with RTI International in Rockville, Maryland and lead author of the study said.

In this study, the researchers interviewed almost 1,400 epileptic patients and more than 600 caregivers via the Internet or in a clinical setting. The survey asked for information regarding the patients' type of seizure, treatments, fear of death and awareness of SUDEP. People who did not know what SUDEP was were given a definition.

Overall, 79 percent of the patients who did the survey online knew what SUDEP was whereas only 39 percent of the patients who completed the survey in a clinical setting did. Caregivers were also more likely than patients to know what SUDEP was, at 76 percent versus 65 percent. People who knew about SUDEP were more likely to have a higher education level and have a primary care doctor who was an epilepsy specialist. They were also more likely to be suffering from severe epilepsy for a longer period of time.

The researchers found that patients who learned what SUDEP was reported feeling fear, anxiety and sadness. The patients also stated that they wanted to discuss their emotions with their doctors. Even though knowledge of SUDEP increased concerns for both patients and caregivers, about 50 percent of them believed that this knowledge could positively help them manage epilepsy.

"Preventing seizures in patients with difficult to treat epilepsy may help avert sudden death," concluded Dr. Kroner according to the press release. "It's important for the neurological community to continue to focus our attention on SUDEP, determining which epilepsy patients are at greatest risk and how best to educate them and their caregivers."

The study, "Characteristics of Epilepsy Patients and Caregivers Who Either Have or Have Not Heard of SUDEP," was published in the journal, Epilepsia.

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