Despite the "staggering number" of epilepsy-related deaths every year, related statistics aren't adequately counted, public awareness about these deaths is woefully inadequate, and research in this area is lacking, experts say.
In a paper published online December 16 in Neurology, epilepsy experts, led by Orrin Devinsky, MD, professor, neurology, and director, NYU Comprehensive Epilepsy Center in New York, are calling for a national system to accurately classify and count epilepsy-related deaths, including sudden unexpected death in epilepsy (SUDEP), similar to what has been done for sudden infant death syndrome (SIDS).
The "Back to Sleep" campaign has successfully raised awareness about the risks for SIDS in infants sleeping on their stomach.
According to Dr Devinsky, epilepsy-related deaths exceed those due to SIDS. At least 2750 cases of SUDEP occur every year in the United States, while in 2013 SIDS claimed the lives of 1575 infants. Lost years of life due to epilepsy may add up to more than any other neurologic disorder, he said.
Dr Devinsky told Medscape Medical News that he is "tremendously frustrated" that so little has been done to educate patients about simple measures to reduce their risk for SUDEP and many other deadly and disabling consequences of seizures.
It's crucial, he said, that patients with epilepsy reduce their risks by improving medication adherence and lifestyle habits, through, for example, avoiding sleep deprivation, excess alcohol, and seizure provocative factors such as stress.
"Epilepsy-related deaths can be reduced in the next 5 years through urgent public health and preventive measures that could save thousands of American lives every year," he said.
Sharing the Blame
Neurologists share the "main blame" for the failure to adequately educate patients with epilepsy and families about the risks of death, he said.
Traditionally, patients have been told that a single seizure isn't harmful and that tonic-clonic seizures are dangerous only if they're prolonged or cause physical injuries.
"We have not been telling the full story," the authors write. Seizures, they note, can cause epilepsy-related deaths from drowning, car and bike accidents, aspiration pneumonia, and status epilepticus as well as SUDEP. Only a minority of neurologists routinely discuss SUDEP with their patients, they add.
Dr Devinsky also blamed the Centers for Disease and Prevention (CDC) and the National Institutes of Health for the lack of preventive strategies to reduce epilepsy-related deaths.
Included in such prevention measures should be assessment of psychiatric illness in people with epilepsy (PWE). Epilepsy is often complicated by depression, impulsivity, psychosis, and substance abuse, which all increase risks for suicide, say the authors.
"Screening for suicidality in PWE may identify patients for targeted behavioral and pharmacologic interventions."
There's also a dearth of research into strategies to reduce epilepsy-related mortality and into interventional programs to prevent seizures. Dr Devinsky called this lack of investment "pitiful."
He pointed to many other failures when it comes to reducing epilepsy-related mortality. For example, the healthcare system doesn't accurately quantify epilepsy-related deaths, which presents a "major obstacle to progress."
In the article, the authors cite a recent study of an open cohort of adults with epilepsy with Ohio Medicaid insurance that yielded a rate of SUDEP of 0.01 cases per 1000 patient-years, but another study of mortality in a closed cohort of patients with childhood-onset epilepsy in Finland that found a rate of 2.6 cases per 1000 patient-years.
"This is a 250-fold difference; only a small part results from differences in age distributions and socioeconomic status," the authors write. They add that by far the largest difference in these cohorts was different methods of determining cause of death.
Epilepsy-related deaths aren't accurately classified. Here, Dr Devinsky said that medical examiners and coroners too often note cardiovascular disease, pneumonia, or another underlying condition as the cause of death (COD), even though seizure activity was probably what killed the patient.
If a patient with epilepsy dies suddenly, SUDEP is rarely listed as the COD. "Cardiovascular disease or arrhythmia is often the assumed COD in an otherwise healthy PWE, ignoring the 27-fold increase of sudden death among PWE," the authors note.
It might be time to expand the definition of SUDEP, they add. Currently, the definition excludes febrile and first afebrile seizures as well as status epilepticus.
"The border between SUDEP and death due to status is fluid. We should study how seizure intensity, duration, and number interact with an individual's environment, medical, neurologic, genetic, and epigenetic background to modify risk of death," they write.
Dr Devinsky also pointed a finger at the CDC for the lack of systematic national data on epilepsy-related deaths. "You can go to CDC stats and find out death rates from all varieties of heart disease and cancer, HIV, stroke, et cetera, but nowhere can you find the number of deaths from epilepsy," he said.
Commenting on the paper for Medscape Medical News, Mill Etienne, MD, director, epilepsy and EEG, Bon Secours Charity Health System, and assistant professor, neurology, New York Medical College, Suffern, New York, said it "provides a comprehensive review of epilepsy-related mortality" and "demonstrates the importance of health literacy" in improving health outcomes.
"Doctors, patients and caregivers need to be better educated about all aspects of epilepsy, including the causes of morbidity and mortality from epilepsy," said Dr Etienne.
He added that he was "glad" that the authors highlighted the need for more research funding to look at health disparities. "I agree with the authors that we must act now to decrease the mortality of people with epilepsy."
The authors and Dr. Etienne have disclosed no relevant financial relationships.
Neurology. Published online December 16, 2015. Abstract
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Cite this: Experts Aim to Stop Epilepsy-Related Mortality - Medscape - Dec 22, 2015.