Study: Caregivers more aware of sudden unexpected death in epilepsy than patients

RESEARCH TRIANGLE PARK, NC— Caregivers for epilepsy patients are more aware of sudden unexpected death in epilepsy (SUDEP) than patients, including those with seizure disorders, according to a new study by researchers at RTI International, Epilepsy Foundation, NYU Langone Medical Center, and Institute of Neurology and Neurosurgery at Saint Barnabas. 

The research found that 76 percent of caregivers are more likely to have heard of SUDEP compared with 65 percent of patients with epilepsy, with prior awareness associated with increased education level, more severe and longer epilepsy duration, and having an epilepsy specialist as the primary care provider. The study was published in Epilepsia, a journal published by Wiley on behalf of the International League Against Epilepsy.

"When someone with epilepsy dies suddenly we want to understand why," said Barbara Kroner, Ph.D., senior epidemiologist at RTI, and lead author of the study. "Our research calls attention to SUDEP and provides important knowledge to help neurologists have open discussions with patients, especially those at greatest risk of epilepsy–related death." 

Researchers surveyed nearly 1,400 patients with epilepsy and more than 600 caregivers. The survey, conducted online or in a clinical setting, included questions about the type of seizure, epilepsy treatment plans, fear of death, and familiarity with SUDEP. If respondents had not heard of SUDEP, a definition was provided, and questions about the initial reaction to the condition were asked. 

Findings indicate that internet survey respondents were more likely to have heard about SUDEP than patients in the clinical setting at 71 percent and 39 percent, respectively. 

Fear, anxiety and sadness were often reported by epilepsy patients at caregivers upon first learning about SUDEP, with most wanting to discuss these feelings with their doctor. Knowledge of SUDEP and increase in epilepsy severity escalated the concern of death among patients and caregivers. However, half of respondents thought that knowledge of SUDEP would influence management of epilepsy. 

"Preventing seizures in patients with difficult to treat epilepsy may help avert sudden death," Kroner said. "It's important for the neurological community to continue to focus our attention on SUDEP, determining which epilepsy patients are at greatest risk and how best to educate them and their caregivers." 

SUDEP is uncommon, occurring in about one in 1,000 individuals with epilepsy each year. However, a study also published in this issue of Epilepsia suggests that SUDEP ranks second only to stroke when comparing years of potential life lost from SUDEP with other select neurologic diseases. Moreover, previous evidence shows that only five percent of neurologists discuss SUDEP with their all patients and 69 percent discuss it with few or none of their patients. 

 

Highlights

  • Caregivers for epilepsy patients are more aware of sudden unexpected death in epilepsy (SUDEP) than patients, including those with seizure disorders, according to a study by RTI International and partners
  • Research found that 76 percent of caregivers are more likely to have heard of SUDEP compared with 65 percent of patients with epilepsy
  • The study was published in Epilepsia