Many studies have been performed to estimate the incidence of sudden unexpected death in epilepsy (SUDEP). The studies differed in the populations assessed, the geographic locations, and methodologies to ascertain SUDEP cases. In a recent systematic review by Thurman and colleagues, the authors attempted to pool data from multiple studies to obtain an estimate of the general and age-stratified incidence of SUDEP in high-income (developed) countries. The authors reviewed the literature to identify studies that had attempted to rigorously identify all potential SUDEP cases in a well-defined geographic region and found three studies that met their stringent criteria. In the pooled analysis, they estimated that the incidence of SUDEP was 0.83 per 100,000 people per year. Using current census data, this translates into approximately 2,750 SUDEP deaths annually in the United States. Based on a presumed prevalence of epilepsy of 7.1 per 100,000, an estimated 1.3 per 1000 people with epilepsy die from SUDEP annually, consistent with prior population-based estimates.
Using age-adjusted rates of SUDEP derived from the literature, the authors compute a novel measure – number of life years lost - to assess the public health impact of SUDEP. While mortality from SUDEP alone (not including other causes of death in epilepsy), is low compared to other neurologic disorders such as stroke, Alzheimer’s disease and Amyotrophic Lateral Sclerosis (ALS), because SUDEP incidence is highest in the 3rd to 5th decade of life, the number potential years lost to SUDEP is second only to stroke among neurologic disorders.
The estimates provided in this review highlight the disparity between the mortality and public health burden associated with epilepsy and current levels of research funding and public awareness. Both public and private funding levels for epilepsy research lag other neurologic conditions. This gap is further widened when you consider the number of productive life years lost to just the single cause of premature mortality highlighted in this review.