A Nationwide Survey of Coroners and Medical Examiners on Documentation of Sudden Unexplained Death in Epilepsy (SUDEP): Development of Survey Instrument and Strategy.
Abstract number :
2.145
Submission category :
Year :
2001
Submission ID :
162
Source :
www.aesnet.org
Presentation date :
12/1/2001 12:00:00 AM
Published date :
Dec 1, 2001, 06:00 AM
Authors :
P.L. Schraeder, MD, Neurology, Albert Einstein Medical Center, Philadelphia, PA; E.L. So, MD, Neurology, Mayo Clinic & Mayo Medical School, Rochester, MS
RATIONALE: A major limitation in the investigation into the etiology of SUDEP is the lack of accurate data in the death certificates of persons with epilepsy. A research study is needed to assess how coroners and medical examiners in the U.S. document causes of death in persons with epilepsy. Information gained from the study can be used to ascertain SUDEP occurrence with potential risk factors, and to develop educational programs to improve accuracy of death certificate data.
METHODS: The scientific literature was searched and reviewed to identify historical and laboratory data that are required for the determination of definite SUDEP, but are frequently lacking in the examination and documentation of the death. A survey form was developed in collaboration with the Survey Research Center of the Mayo Clinic. A directory of U.S. coroners and medical examiners was obtained from the National Public Safety Information Bureau, Stevens Point, WI.
RESULTS: Literature review identified 12 critical informational items that are frequently unavailable for the definitive determination of SUDEP (i.e, history of seizure disorder, drug intake, medication compliance, & cardiac disorder; determination of seizure occurrence preceding death; evidence of seizure injury or asphyxia; toxicologic analysis including AED concentrations; histologic examination of major organs including brain). To optimize future educational efforts to improve the documentation of evidence concerning SUDEP, we also included 10 questions regarding the demographic and practice background of the coroners/medical examiners surveyed. To enhance the survey response rate, the survey instrument was designed for completion within 10 to 15 minutes, and an option of $10 participation fee was also made available. In order to maintain geographic representation of the responders to this national survey, proportional randomization of the approximately 1,700 coroners/medical examiners identified in the directory was conducted.
CONCLUSIONS: Design of a national survey regarding SUDEP must carefully consider which critical information is sought and how it can be related to practice characteristics of the professionals surveyed. The data obtained should be appropriate for designing future educational programs for coroners and medical examiners.
Support: Albert Einstein Medical Center; Mayo Foundation for Research & Education.