Daniel S Atherton1, Gregory G Davis2, Cyndi Wright3, Orrin Devinsky4, Dale Hesdorffer5. 1. Department of Pathology, University of Alabama, Suite 220, 1515 6th Ave South, Birmingham, AL 35233, United States; Jefferson County Coroner's/Medical Examiner's Office, Suite 220, 1515 6th Ave South, Birmingham, AL 35233, United States. Electronic address: datherto@uab.edu. 2. Department of Pathology, University of Alabama, Suite 220, 1515 6th Ave South, Birmingham, AL 35233, United States; Jefferson County Coroner's/Medical Examiner's Office, Suite 220, 1515 6th Ave South, Birmingham, AL 35233, United States. 3. Epilepsy Foundation, SUDEP Institute, 8301 Professional Place East, Suite 200, Landover, MD 20785, United States. 4. Comprehensive Epilepsy Center, New York University Langone, 223 E 34th St., New York, NY 10016, United States. 5. GH Sergievsky Center and Department of Epidemiology, Columbia University, 630 West 168 St., New York City, NY 10032, United States.
Abstract
OBJECTIVE: Lack of standardized terminology on death certificates (DCs) of SUDEP type cases may obscure the presence of epilepsy in these deaths. Most DCs for individuals dying unexpectedly with epilepsy are certified by medical examiners (MEs). The purpose of this study was to gauge death certification practices of MEs when interpreting SUDEP cases and assess implications for valid surveillance of SUDEP. MATERIALS AND METHODS: A survey consisting of clinical vignettes describing deaths in individuals with epilepsy was sent to medical examiners. Respondents were asked to indicate how they would certify death on a DC. Similar text responses were aggregated and coded according to the 10th 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. Depending upon the vignette, the proportion of responses within each case that did not have an ICD-10 seizure code ranged from 3% to 62%. G40.9 (Epilepsy, unspecified) resulted from 43% of responses, and R56.8 (Other and unspecified convulsion) resulted from 38% of responses. CONCLUSION: The survey indicates that a high proportion of DCs do not have a seizure code and would not be identified utilizing these ICD-10 codes. The complicated nature of deaths in SUDEP, unclear circumstances surrounding a given death, and the lack of familiarity with SUDEP by surviving relatives may all contribute to variable terminology used to certify SUDEP deaths. Our results emphasize the need for collaboration between neurologists and forensic pathologists to develop a more uniform approach to death certification in SUDEP that will facilitate SUDEP research and inform relatives of individuals who die of SUDEP.
OBJECTIVE: Lack of standardized terminology on death certificates (DCs) of SUDEP type cases may obscure the presence of epilepsy in these deaths. Most DCs for individuals dying unexpectedly with epilepsy are certified by medical examiners (MEs). The purpose of this study was to gauge death certification practices of MEs when interpreting SUDEP cases and assess implications for valid surveillance of SUDEP. MATERIALS AND METHODS: A survey consisting of clinical vignettes describing deaths in individuals with epilepsy was sent to medical examiners. Respondents were asked to indicate how they would certify death on a DC. Similar text responses were aggregated and coded according to the 10th 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. Depending upon the vignette, the proportion of responses within each case that did not have an ICD-10 seizure code ranged from 3% to 62%. G40.9 (Epilepsy, unspecified) resulted from 43% of responses, and R56.8 (Other and unspecifiedconvulsion) resulted from 38% of responses. CONCLUSION: The survey indicates that a high proportion of DCs do not have a seizure code and would not be identified utilizing these ICD-10 codes. The complicated nature of deaths in SUDEP, unclear circumstances surrounding a given death, and the lack of familiarity with SUDEP by surviving relatives may all contribute to variable terminology used to certify SUDEP deaths. Our results emphasize the need for collaboration between neurologists and forensic pathologists to develop a more uniform approach to death certification in SUDEP that will facilitate SUDEP research and inform relatives of individuals who die of SUDEP.
Authors: Laura Gould Crandall; Joyce H Lee; Daniel Friedman; Kelly Lear; Katherine Maloney; J Keith Pinckard; Peter Lin; Thomas Andrew; Kristin Roman; Kristen Landi; Heather Jarrell; Alex K Williamson; J C Upshaw Downs; Kathy Pinneri; Christopher William; Joseph J Maleszewski; R Ross Reichard; Orrin Devinsky Journal: JAMA Netw Open Date: 2020-10-01