Monday, January 4, 2016

Epilepsy-related deaths

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.

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...

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.

1 comment:

  1. Devinsky O, Spruill T, Thurman D, Friedman D. Recognizing and preventing epilepsy-related mortality: A call for action. Neurology. 2015 Dec 16. pii:
    10.1212/WNL.0000000000002253. [Epub ahead of print]


    Epilepsy is associated with a high rate of premature mortality from direct and indirect effects of seizures, epilepsy, and antiseizure therapies. Sudden unexpected death in epilepsy (SUDEP) is the second leading neurologic cause of total lost potential life-years after stroke, yet SUDEP may account for less than half of all epilepsy-related deaths. Some epilepsy groups are especially vulnerable: individuals from low socioeconomic status groups and those with comorbid psychiatric illness die more often than controls. Despite clear evidence of an important public health problem, efforts to assess and prevent epilepsy-related deaths remain inadequate. We discuss factors contributing to the underestimation of SUDEP and other epilepsy-related causes of death. We suggest the need for a systematic classification of deaths directly due to epilepsy (e.g., SUDEP, drowning), due to acute symptomatic seizures, and indirectly due to epilepsy (e.g., suicide, chronic effects of antiseizure medications). Accurately estimating the frequency of epilepsy-related mortality is essential to support the development and assessment of preventive interventions. We propose that educational interventions and public health campaigns targeting medication adherence, psychiatric comorbidity, and other modifiable risk factors may reduce epilepsy-related mortality. Educational campaigns regarding sudden infant death syndrome and fires, which kill far fewer Americans than epilepsy, have been widely implemented. We have done too little to prevent epilepsy-related deaths. Everyone with epilepsy and everyone who treats people with epilepsy need to know that controlling seizures will save lives.