New York—Failure to take their most recent dose of epilepsy medication appears to be a risk factor for sudden unexpected death in epilepsy (SUDEP) patients, according to a new study.

A report in Neurology discusses the rare risk of sudden death in epilepsy patients and states that SUDEP can occur even in those with well-controlled epilepsy. That finding goes against smaller studies suggesting that the risk is greatest among patients with severe, difficult-to-treat epilepsy.

NYU Langone Health–led researchers emphasize that, instead, precipitating factors for patients include failure to take their last dose of epilepsy medication, sleep deprivation, and not having had a seizure in at least a year.

“Since sudden death can happen to anyone with epilepsy, doctors need to discuss this rare possibility with people with epilepsy and their families,” explains study coauthor Orrin Devinsky, MD, of NYU Langone Health in New York. “They need to understand the critical--and potentially life-saving importance of taking their medications on time and not skipping their medications or taking less than their prescribed dose.”

To better understand SUDEP, the study team obtained medical records, conducted family interviews, and reviewed death-related reports in the North American SUDEP Registry (NASR) between October 2011 and June 2018. Two epileptologists used the information—seizure type, EEG, and MRI results—to determine if the cases met criteria for SUDEP.

Of the 530 NASR records reviewed, 237 were deemed definite or probable cases of SUDEP. Patients determined to have died from SUDEP had a median age of 26 years, and 38% were female.

The report also notes that, of 143 patients with sufficient information, 40% had generalized and 60% had focal epilepsy. SUDEP affected the full spectrum of epilepsies, from benign epilepsy with centrotemporal spikes (n = 3, 1%) to intractable epileptic encephalopathies (n = 27, 11%).

The researchers point out that most of the SUDEP cases (93%), were unwitnessed; 70% occurred during apparent sleep; and 69% of patients were in the prone position. Notably, according to the authors, in only 37% of cases of SUDEP was the last dose of antiseizure medications taken.

At the same time, reported lifetime generalized tonic-clonic seizures (GTCS) were less than 10 in 33% and 0 in 4% of the SUDEP victims.

“NASR participants commonly have clinical features that have previously been associated with SUDEP risk such as young adult age, ASM nonadherence, and frequent GTCS,” the study authors conclude. “However, a sizeable minority of SUDEP occurred in patients thought to be treatment responsive or to have benign epilepsies. These results emphasize the importance of SUDEP education across the spectrum of epilepsy severities.”

“While SUDEP is most common in people with intractable epilepsy, our findings show that SUDEP affects the full spectrum of types of epilepsy, even ones that are typically considered ‘benign,’ Devinsky says.

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