"In a paternalistic way, we either didn’t want to worry someone about the possibility of SUDEP, or we didn’t know the risk. It’s been a decade, and things have dramatically changed."

A decade ago, SUDEP—sudden unexpected death in epilepsy—was not necessarily part of the discussion with patients with epilepsy and their families about the risk factors of their condition. 

Despite being the leading cause of early mortality in those with epilepsy, not much is known about the precise mechanism of SUDEP. However, as time has progressed, the clinical community has begun to incorporate this into the discussion as more about the condition has come to light. With an understanding of the contributory factors that place certain individuals at a higher risk, this has allowed for—and ultimately demanded—the disclosure of SUDEP risk in patient interaction.

Jeffrey Buchhalter, MD, a pediatric epileptologist and adjunct professor of pediatrics at the University of Calgary in Alberta, Canada, told NeurologyLive that while it may have been an act of sparing fear for patients and their families, it is required to disclose a patient’s risk of SUDEP. Buchhalter chaired a presentation about the condition at the American Epilepsy Society’s annual meeting and spoke more at length about it with NeurologyLive.