Guidelines on Sudden Unexpected Death in Epilepsy Released

The incidence of SUDEP in children is roughly 1 in 4,500 every year and for adults roughly 1 in 1,000 every year
The incidence of SUDEP in children is roughly 1 in 4,500 every year and for adults roughly 1 in 1,000 every year

The American Academy of Neurology (AAN) and the American Epilepsy Society have developed guidelines for educating clinicians about sudden unexpected death in epilepsy (SUDEP).

The researchers reached conclusions by consensus after conducting a systematic review of all available evidence. Based on 12 Class I studies they found that the incidence of SUDEP in children was roughly 1 in 4,500 (0.22/1,000 patient-years; 95% CI: 0.16–0.31) every year, with the evidence deemed moderate. For adults, the incidence was found to be roughly 1 in every 1,000 each year (1.2/1,000 patient-years; 95% CI: 0.64–2.32; low confidence in evidence).  

The greatest risk factor for SUDEP was found to be generalized tonic-clonic seizures (GTCS), with a higher frequency of these types of seizures correlating to an increased risk of death.  Those who suffer frequent tonic-clonic seizures ( three or more/year) are 15 times more likely to die suddenly than those who do not have them as often. 

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Given their findings, the authors recommend that clinicians with epileptic patients communicate these risks, however small, to patients and young children's parents and guardians. Patients and guardians should also be made aware that reducing GTCS incidence strongly decreases SUDEP risk. They recommend that clinicians continue to work on reducing seizure frequency by actively managing treatment regimens.

“This guideline makes the conversation much easier with information that may motivate people to take their medications on time, to never skip taking their medications and to learn and manage their seizure triggers so they can work toward reducing seizures,” said Cynthia Harden, MD, co-author of the new guideline and member of AAN. “People who follow their medication schedule or pursue other treatments such as surgery may be more likely to become seizure free.”

For more information visit Neurology.org.