How Much is SUDEP Known by Patients by Epilepsy?

Abstract

Objective:Sudden unexpected death in epilepsy (SUDEP) is the most common cause of death in patients with epilepsy. The issue of informing every epilepsy patient and/or their relatives about SUDEP remains controversial. We evaluated the level of knowledge about SUDEP in patients with epilepsy.Methods:Patients were asked whether they knew about seizure risks and wanted to be informed about seizure risks, whether they had heard of SUDEP before and if they did, from whom or where they had heard about it, and seizure triggers. In addition, the patient’s relatives were asked about what to do or not to do during the seizure.Results:We included 80 patients with epilepsy in the study, of which 45 were female (56.2%) and 35 were male (44.8%). Twenty-five (31.2%) patients stated that they had not received any information about epilepsy. Only nine (11.2%) patients stated that they heard about SUDEP, six of them learned from the internet, three from a doctor, two of them said it happened to their relatives, and 69 (86.2%) patients thought that epilepsy patients should definitely be informed about this issue.Conclusion:Our findings indicate that the level of knowledge about SUDEP among epilepsy patients is quite low. Even though learning SUDEP caused uneasiness in patients, it was observed that patients wanted to learn this information. More efforts should be made to inform patients with epilepsy about epilepsy and its risks and SUDEP.

Keywords

• relatives
• seizure risk
• sudden unexpected death in epilepsy
• survey