Background: Prevalence data for sudden unexplained death in epilepsy (SUDEP) are hampered by its underuse as a final diagnosis on death certificates in appropriate cases. Few data exist about how coroners (COs) and medical examiners (MEs) in the United States use the diagnosis of SUDEP.
Methods: A survey instrument that addressed demographics, professional background, annual cases of epilepsy, seizure history, percentage of post-mortem examinations, cause of death, and use of SUDEP as a diagnosis was sent to all COs and MEs in the United States. Unadjusted comparisons between categorical variables used chi2 tests. A multiple regression model examined the odds of respondents considering SUDEP to be a valid diagnosis.
Results: Of 2995 surveys, 80.7% went to COs and 19.3% to MEs. The response rate was 15.9% for COs and 21.8% for MEs. Acknowledgment of SUDEP as a valid entity was greatest among pathologists (83.5%) versus other physicians and non-physicians (P< .001) and correlated with higher autopsy rates and seeing more cases of epilepsy. In actual practice, SUDEP was not used routinely as a death certificate diagnosis in most cases with no cause of death found at autopsy by any group in the survey regardless of title, educational background, location, autopsy rate, or number of seizure cases seen annually.
Conclusions: SUDEP appears to be an underused final diagnosis by COs and MEs throughout the United States. There is a need to educate officials at all levels about this diagnosis in persons who have epilepsy with no other cause of death.