Patients with Severe Epilepsy More Aware of SUDEP

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Knowledge of sudden unexpected death in epilepsy promoted persons with epilepsy to discuss the event with their doctors, according to a study published in Epilepsia based on survey results of 2,003 persons with epilepsy and caregivers.

Orrin Devinsky, MD, of the Comprehensive Epilepsy Center at NYU Langone Medical Center, and colleagues, conducted online and in-clinic surveys of adult persons with epilepsy (PWE) and caregivers from the Epilepsy Therapy Project and a community hospital. Internet respondents were much more likely to be aware of sudden unexpected death in epilepsy (SUDEP) than the clinic population (71.1% vs. 38.8%), and prior awareness among the populations related to severity and duration of epilepsy, level of education, and having an epileptologist as a primary care provider. The survey included questions about seizure characteristics, epilepsy management, fear of death, and knowledge of SUDEP.

Although knowledge of SUDEP, along with increased severity of epilepsy, created more fear and anxiety among PWEs and caregivers, about half of those surveyed said that their knowledge of SUDEP would influence their epilepsy management.

The researchers concluded that the results could help care providers determine when it’s best to start a discussion on epilepsy-related mortality and SUDEP, how to educate PWEs at high risk of SUDEP about seizure control, and how to best reduce anxiety and fear of death in patients with well-controlled epilepsy. 

Epilepsy
Patients with Severe Epilepsy are More Aware of SUDEP

This study describes the characteristics of persons with epilepsy and caregivers that are or aren't familiar with sudden unexpected death in epilepsy prior to a survey administered online or in a clinical setting. 

Orrin Devinsky, MD, of the Comprehensive Epilepsy Center at NYU Langone Medical Center, and colleagues, conducted the study to help determine when care providers should facilitate a discussion about epilepsy-related mortality and sudden unexpected death in epilepsy (SUDEP) among patients and caregivers in order to educate those at high risk. 

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