In work presented at the European Academy of Neurology Virtual Congress 2020, it was shown that the mortality rates for epilepsy-related deaths has not decreased between 2009 (6.8 per 100,000) and 2015 (9.1 per 100,000), despite advances in treatment during this time. Individuals in their early 20s and 30s were found to be at the highest risk, with 78% of epilepsy-related deaths that occurred in indivuals less than age 30 classified as potentially avoidable.
Anonymous data was collected from health care settings for individuals who died between 2009 and 2016, identifying 2,149 epilepsy-related deaths. In 60% of these deaths (n=1,276) the deceased had 1 or more seizure-related or epilepsy-related hospital admission in the years prior to death, yet less than a quarter (516) had been seen in a neurology clinic. The most common causes of death in the study were sudden unexpected death in epilepsy (SUDEP), aspiration pneumonia, cardiac arrest, congenital malformation, and alcohol-related deaths. The data will be compared with data from living individuals with epilepsy of the same age and gender. These comparisons will focus on the individuals’ epilepsy type, socioeconomic class, standards of care received, and the presence of additional disorders, such as depression.
Dr. Gashirai Mbizvo, completing this Scottish Epilepsy Deaths Study (SEDS) at The University of Edinburgh, commented, “Epilepsy patients are at a higher risk of early death than the general population, but reasons for this are unclear. We hope that we can use this data to learn lessons and reduce the burden of epilepsy-related deaths in the future, many of which we believe are likely to be avoidable. Highlighting such risk factors, and identifying those that could be prevented, might lead to changes in epilepsy care and, ultimately, fewer epilepsy-related deaths in the future.”
Barbara C. Jobst, MD
Chen Zhao, MD; Jonathan G. Hakun, PhD; Krishnankutty Sathian, MBBS, PhD; and Nikolaos Scarmeas, MD, MS, PhD
Tzu-Ying Chuang, MD, PhD, and Dhanashri Miskin, MD