SUDEP classification: Discordances between forensic investigators and epileptologists

Area of Science:

• Neurology
• Forensic Pathology
• Epilepsy Research

Background:

• Sudden unexpected death in epilepsy (SUDEP) is a leading cause of epilepsy-related mortality.
• Accurate diagnosis of SUDEP is crucial for understanding its mechanisms and developing preventive strategies.
• Discordance in death investigations may impact SUDEP research and patient care.

Purpose of the Study:

• To compare SUDEP diagnosis rates between epilepsy specialists and medical examiners/coroners (ME/Cs).
• To identify causes of diagnostic discordance in SUDEP cases.
• To assess factors influencing SUDEP diagnosis accuracy.

Main Methods:

• Retrospective analysis of 220 SUDEP cases with post-mortem examinations.
• Comparison of epileptologist adjudications from the North American SUDEP Registry (NASR) with ME/C-listed causes of death (CODs).
• Analysis of concordance rates based on SUDEP certainty (Definite, Definite Plus, Possible) and associated factors.

Main Results:

• Concordance between epileptologists and ME/Cs decreased with lower SUDEP certainty (Definite: 84%, Definite Plus: 50%, Possible: 0%).
• Discordant cases showed higher rates of psychiatric comorbidity, substance abuse, and drug toxicology findings.
• ME/Cs frequently favored non-epilepsy CODs, especially when structural or toxicological findings were present, and rarely listed SUDEP as the COD.

Conclusions:

• Diagnostic accuracy for SUDEP is influenced by the certainty of the diagnosis and the investigative approach.
• A bias towards non-epilepsy diagnoses by ME/Cs, due to SUDEP's lack of pathognomonic features, contributes to discordance.
• Improved collaboration between epilepsy and ME/C communities is essential for accurate SUDEP diagnosis, research, and support.