Abstracts

RATIONALE: A major limitation in the investigation of SUDEP is the lack of accurate data in the death certificates of persons with Epilepsy. We designed a research survey to assess how coroners and medical examiners in the U.S. document causes of death in persons with epilepsy. Information gained from the study will be used to develop educational programs for coroners and medical examiners to improve the ascertainment of SUDEP occurrence and in the identification of its potential risk factors.
METHODS: A literature search identified historical and laboratory data that are required for the determination of SUDEP, but are frequently lacking in the examination and documentation of the death. A survey form was developed with the assistance of the Survey Research Center of the Mayo Clinic and sent to all 2997 coroners and medical examiners on a mailing list obtained from the National Public Safety Information Bureau, Stevens Point, WI.
RESULTS: To date 338 responses have been analyzed with additional returns in process. Of these 338, 25% (84) came from Medical Examiners (ME[ssquote]s), 53% (178) from Coroners, and 23% (76) from others (e.g. Justice of the Peace, Sheriff, Judge). Approximately 1/3 (121) of responses reported never seeing a case of epilepsy. Forty-seven percent (160) of the responses to date , consisting of 87% of pathologists, 63.5% of non-pathologists physicians and 38% of non-physicians, acknowledged SUDEP as a valid diagnosis. However, these percentages were much higher than the actual percentage of deaths attributed to SUDEP in autopsied cases performed by the same respondents where no cause of death was found.
Autopsies on epilepsy cases were routinely performed by 41% of respondents (i.e. in [gt] 75% of cases) while 27% of respondents never performed autopsies on epilepsy patients. The medical examiners were most likely to perform such autopsies, while non-medical examiners were less likely to do so.
CONCLUSIONS: These preliminary data indicate that ME[ssquote]s (mostly forensic pathologists) are more likely to consider SUDEP as a valid diagnosis. However both ME[ssquote]s and coroners do not use SUDEP as a common cause of death when signing off on autopsied cases that have no pathological explanation for the death. The autopsy rate in epilepsy cases is higher in urban/suburban jurisdictions compared to small cities, towns and rural areas. An educational effort is needed to improve coroner and medical examiner awareness of the importance of performing autopsies in epilepsy and using SUDEP as a final diagnosis.
[Supported by: the Albert Einstein Society and by Mayo Clinic]