Abstracts

Rationale: Sudden unexpected death in epilepsy (SUDEP) is the leading cause of death in individuals with chronic, uncontrolled epilepsy. This poorly understood phenomenon can cause death in anyone with epilepsy. Death certificates should identify SUDEP, but lack of standardized terminology may obscure the presence of epilepsy in these deaths. SUDEP and other sudden and unexpected deaths are generally investigated by medical examiner or coroner offices that perform postmortem examinations to determine causes of death. Thus, most death certificates for individuals dying suddenly and unexpectedly with epilepsy are certified by medical examiners or coroners. The purpose of this study is to gauge death certification practices of medical examiners when interpreting SUDEP cases and assess what implications current death certification practices have for valid surveillance of SUDEP. Methods: A survey consisting of clinical vignettes describing deaths in individuals with epilepsy or other seizure-related disorders was sent to members of the National Association of Medical Examiners. Respondents were asked to indicate how they would certify Part 1 (immediate and underlying causes of death), Part 2 (contributing factors), and manner of death on a death certificate for each vignette. Vignettes (modeled after Epilepsia 2012; 53(2):227-33) were designed to describe scenarios that would likely be of interest to SUDEP investigators accessing similar type cases to study SUDEP. A total of 77 forensic pathologists completed the survey. Similar text responses were aggregated and sent to the National Center for Health Statistics (NCHS) for coding according to the 10^th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-10) coding system. Results: A total of 847 responses on 11 cases were received. After aggregating similar text coding, 201 representative examples of how death certificates were completed received ICD-10 codes. Depending upon the vignette, the proportion of responses within each case that did not have an ICD-10 seizure code ranged from 3%-62%. The most common seizure code used was G40.9 (Epilepsy, unspecified; Table). G41.9 was used 6 times although no vignette described status epilepticus. Conclusions: The survey indicates that a significant proportion of death certificates that would be of interest to SUDEP investigators would not be identified by investigators utilizing ICD-10 epilepsy codes. The complicated and mysterious nature of deaths in SUDEP, unclear circumstances surrounding a given death, and the lack of familiarity with SUDEP by relatives of those who die may all contribute to variations in terms used to certify SUDEP deaths. Variations in terms lead to variations in coding by NCHS staff. The results of this study emphasize the need for collaboration between neurologists and forensic pathologists toward developing a strategy for a uniform approach to death certification in SUDEP that will be useful for death certification, SUDEP research, and to the relatives of individuals who die of SUDEP.