Lack of Clear Mortality Measures May Be Sabotaging Epilepsy Research, Care

A more encompassing, standardized classification system is direly needed, said Dr Devinsky, who is also professor of neurology, neurosurgery, and psychiatry at NYU Langone School of Medicine in New York City. Its development requires partnering with medical examiners regarding guidelines for investigating and reporting epilepsy-associated deaths.

Inadequate reporting of epilepsy-associated death severely impacts patient care, says Dr Devinsky. Because the gravity of mortality risk is not recognized, need for seizure control may be underestimated by clinicians and patients alike. “There is an enormous unmet opportunity to save thousands of lives of Americans with epilepsy by educating patients about the importance of seizure control, obtaining accurate tracking of epilepsy-related deaths, and developing interventions to improve outcomes,” he said.

More Emphasis on Mortality Risk and Prevention Crucial

Although research and awareness of SUDEP are on the rise thanks to recent efforts by the Epilepsy Foundation, Citizens United for Research in Epilepsy, Finding A Cure for Epilepsy and Seizures, and the National Institute of Neurological Disorders and Stroke’s Center for SUDEP Research, clinicians have generally not adequately stepped up to the plate about addressing mortality risk with patients, according to Dr Devinsky. A more thorough clinician-patient discussion about the morbidity and mortality associated with epilepsy is required to help bolster treatment optimization and adherence, according to Dr Devinsky and colleagues, but that discussion needs to be bolstered by clear, thorough data on morbidity and mortality along with educational programs that duly inform clinicians and help them inform their patients.


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  2. Kaiboriboon K, Schiltz NK, Bakaki PM, Lhatoo SD, Koroukian SM. Premature mortality in poor health and low income adults with epilepsy. Epilepsia. 2014;55(11):1781-1788.