New Guideline Tackles Sudden Unexpected Death in Epilepsy

epilepsy brain EEG
epilepsy brain EEG
A newly published guideline shines light on sudden unexpected death in epilepsy and how clinicians can help prevent it.
The following article is part of live conference coverage from the 2017 American Academy of Neurology (AAN) annual meeting in Boston, Massachusetts. Neurology Advisor’s staff will be reporting breaking news associated with research conducted by leading experts in neurology. Check back for the latest news from AAN 2017.

BOSTON — The American Academy of Neurology and the American Epilepsy Society have released a new guideline1 on sudden unexpected death in epilepsy (SUDEP), highlighting the incidence, risk factors, and preventive approaches for this poorly understood and catastrophic risk of epilepsy.

According to guideline author Cynthia Harden, MD, of Mount Sinai Health System in New York, it is critical for health care professionals to communicate the occurrence rate and specific risk factors for SUDEP to persons and families affected by epilepsy. “Our guideline brings clarity to the discussion, giving health care providers practical information they can use to help people with epilepsy reduce their risk,” Dr Harden said in a press release.2

The guideline, titled “Practice guideline: Sudden unexpected death in epilepsy incidence rates and risk factors,” was presented at the 2017 American Academy of Neurology Annual Meeting held April 22-28 in Boston, Massachusetts and published simultaneously in the journal Neurology.

Results and Risk Factors

After systematically reviewing all available evidence, the guideline authors concluded that every year, SUDEP affects 1 in 4500 children; this number increases to 1 in 1000 people in adulthood.

Furthermore, the authors found that the major risk factor for SUDEP was generalized tonic-clonic seizures (GTCS). Specifically, results indicated that individuals who have 3 or more GTCS per year were 15 times more likely to experience SUDEP than individuals who did not experience GTCS 3 or more times per year.

Although the authors examined other potential risk factors for SUDEP, the evidence was low, very low, or conflicting in each case.


In light of these findings, the guideline authors recommend health care professionals treating patients with epilepsy inform them about the small risk for SUDEP (Level B), and that controlling seizures, particularly GTCS, may reduce the risk for SUDEP (Level B).

In addition, the authors recommend that for patients with epilepsy who continue to experience GTCS, “Clinicians should continue to actively manage epilepsy therapies to reduce seizure occurrences and the risk of SUDEP while incorporating patient preferences and weighing the risks and benefits of any new approach (Level B),” the guideline authors wrote.

Dr Harden noted that educating health professionals and people with epilepsy about SUDEP is an important first step. “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,” she said in the release. “People who follow their medication schedule or pursue other treatments such as surgery may be more likely to become seizure-free.”

Going forward, Dr Harden said more research is necessary to identify other preventable risk factors so that future studies can focus on finding ways to reduce the occurrence of SUDEP.

Disclosure: Dr Harden has received royalties from Wiley and UpToDate, and has served as a contributing editor for Epilepsy Currents. See the study for a full list of all other author disclosures.

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  1. Harden C, Tomson T, Gloss D, et al. Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors. Neurology. 2017;88:1674-1680.
  2. AAN guideline: Sudden unexpected death in epilepsy (SUDEP) incidence rates and risk factors [news release]. American Academy of Neurology newsroom: April 24, 2017.