How can the medical community advance research and tackle the difficult issue of sudden unexplained death in epilepsy (SUDEP)?
A key issue hindering the development of effective sudden unexpected death in epilepsy (SUDEP) prevention efforts is the lack of data on the incidence of such occurrence as well as the extent of its burden on public health, according to an expert speaker at the American Epilepsy Society (AES) Annual Meeting.
“Right now, we have the cart before the horse,” said Dale C. Hesdorffer, PhD, Professor of Epidemiology at the Columbia University Medical Center. “Sure, we can implement public health interventions but we have no known reliable outcomes [of those interventions].”
Gaps in knowledge of the risk of SUDEP, from both families and health care professionals, prohibit researchers from pinpointing target areas from which they could gather the most valuable information about SUDEP prevention.
In a 2014 study Hesdorffer had co-authored assessing the public health burden of SUDEP in the United States, results indicated that, although SUDEP requires autopsy for definitive diagnosis, most coroners and medical examiners do not use the diagnosis of SUDEP as an official cause of death.1 It is also common, she said, for a family or epitologist to forgo an autopsy of a decedent's body because they assume the death was a result of an epilepsy complication.
For the sake of advancing SUDEP research and awareness, Hesdorffer said medical examiners, coroners, and the general public need to make the decision to conduct thorough autopsies on individuals with epilepsy. They would provide valuable insight about modifiable risk factors and circumstances of death, which would, in turn, aid the development of successful prevention strategies and programs.
“Ultimately, we need intervention to prevent SUDEP and it should take place in the community in which all sudden deaths go to autopsy,” said Hesdorffer. “If this happens, an intervention could be implemented and we could look at the increase or decrease in SUDEP incidence over a period of time and evaluate pre-intervention as opposed to the post-intervention.”
According to the study, the limitations of existing data highlight the importance of gathering additional population-based studies from medical examiner and coroner offices with active protocols to identify epilepsy and SUDEP occurrence in decedents. Cross-referencing such information from clinical reports, vital records, and death certificates would offer vital information, such as modifiable risk factors and circumstances of death.
She further explained that a better understanding of the incidence and public health burden of SUDEP is necessary to recognize priorities in medical and prevention research as well as inform people with epilepsy more accurately of their risk.
Although Hesdorffer believes there is a lot of work to do to identify true SUDEP interventions, she is optimistic that research is headed in the right direction toward reducing the overall occurrence of SUDEP cases.
The AES 2015 Annual Meeting was held December 4-8 in Philadelphia.
Session: SUDEP: Are we read for trials of SUDEP prevention in people with epilepsy? Dec 4, 2015.
1. Thurman DJ, Hesdorffer DC, French JA. Sudden unexpected death in epilepsy: Assessing the public health burden. Epilepsia. 2014:55(10):1479-1485.