SUDEP Update

Sudden Unexpected Death in Epilepsy (SUDEP) is the major reason for premature death in people with epilepsy and has been an area of intense research over the last decade. The American Academy of Neurology and the American Epilepsy Society recently published a practice guideline based on a systematic review and meta-analysis with emphasis on determining the incidence of SUDEP and the question of whether risk factors for SUDEP have been identified. Subsequent work has established that the SUDEP incidence in the order of 1.1-1.3/1.000 patient years among people with epilepsy, and similar across age groups. The risk, however, varies considerably between people with epilepsy depending on individual risk factors. The systematic review identified generalized tonic-clonic seizures (GTCS; in this context representing focal to bilateral tonic-clonic as well as generalized tonic-clonic seizures) as the major risk factor and concluded that the risk increases with increasing frequency of GTCS. Risk factors identified with moderate confidence were lack of nocturnal supervision, and absence of nocturnal listening device. The latter all based on single studies. The association with GTCS frequency has subsequently been confirmed in a large Swedish population-based case-control study, which also found nocturnal GTCS and living alone as risk factors. Most of the SUDEP victims lived alone and the combination of living alone and having GTCS increased dramatically the risk of SUDEEP. Current data suggest that the most effective way to prevent SUDEP is to improve control of GTCS, e.g. by epilepsy surgery or by intensified pharmacological treatment. In support for the latter, a meta-analysis of placebo-controlled add-on trials in treatment resistant epilepsy revealed that patients randomized to add-on with active treatment had a substantially lower SUDEP incidence than patients randomized to add-on placebo.