New US Guidelines on sudden unexpected death in epilepsy (SUDEP)

Posted Apr 26 2017 in Living with epilepsy / Uncategorized

New guidelines from the American Academy of Neurology and the American Epilepsy Society, titled “Practice guideline: Sudden unexpected death in epilepsy incidence rates and risk factors” were presented at the 2017 American Academy of Neurology Annual Meeting currently being held in Boston, Massachusetts.  At the same time they were published in the journal Neurology.

Guidelines author Dr Cynthia Harden said “Our guideline bring clarity to the discussion, giving health care providers practical information they can use to help people with epilepsy reduce their risk.”  She added that it was critical for health care professionals to communicate the occurrence rate and specific risk factors for SUDEP to persons and families affected by epilepsy

After systematically reviewing all available evidence, the guideline authors concluded that every year, in the USA,  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.

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.

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