Educating Patients and Caregivers on Sudden Death Risk in Epilepsy

According to recent research published on behalf of the International League Against Epilepsy, most patients and caregivers want to be educated about sudden unexpected death in epilepsy (SUDEP).

The study administered a questionnaire at a clinic and via the Internet. Close to 1400 patients and 600 caregivers were surveyed. The Web respondents were more likely to be educated on SUDEP than those at the clinic. Overall, 76% of caregivers knew about SUDEP, while 65% of patients had heard of SUDEP.

Most of the Web respondents who had heard of SUDEP (71%) said they wanted their health care professional to tell them about it, while 26.7% said they wanted information only if their risk was high. The other 2.3% said they did not want to be told.

Among the clinic-based respondents, about 62% said they wanted to be told about SUDEP regardless of their risk, 34.5% said they wanted to know if their risk was high, and 3.4% said they did not want to know either way.

Among the Web respondents, 37.4% wanted to discuss SUDEP at the time of diagnosis, 23.1% at followup if their seizures were not controlled, 27.2% at follow-up regardless of seizure control, and 12.3% when they (patients/caregivers) ask about it. The clinic respondents’ results were similar.