Patients With Epilepsy Want to Know About Death Risk

Pauline Anderson

March 07, 2017

Patients with epilepsy want information about their risk for sudden unexpected death in epilepsy (SUDEP), even if it frightens them, and they want their doctor to provide this information, preliminary results of a new patient survey reveal.

The survey findings further suggest that providing information on SUDEP might encourage patients to be more adherent with therapy.

"I'm hopeful that studies such as this one will increase providers' comfort level" with providing SUDEP-related information, said lead author, Lucretia Long, CNP, assistant clinical professor, Ohio State University Wexner Medical Center, Columbus.

The research was released February 23 and will be presented at the American Academy of Neurology (AAN) 2017 Annual Meeting that will take place in Boston, Massachusetts, April 22 to 28.

The estimated rate death associated with SUDEP is as high as 1 per 100 patients annually, but doctors are divided on whether to inform patients of its risks. "There's a huge debate in the epilepsy world as to whether or not patients with epilepsy should be informed of SUDEP," said Long.

Some providers feel that disclosing this information would provoke unnecessary fear while others believe that informing patients might improve adherence, and perhaps reduce the overall risk for SUDEP, she said.

Assessing Perceptions

For this analysis, adults with epilepsy attending an outpatient clinic were given a one-page information sheet on SUDEP and then asked to complete an 8-item questionnaire assessing their perception of the information.

All 42 patients who completed the questionnaire said adult patients with epilepsy had a right to know about SUDEP.

About 92% felt that healthcare providers should be required to inform patients of the risks.

Research shows that not all healthcare providers tell patients about SUDEP, said Long. She pointed to a 2014 survey of neurologists in the United States and Canada showing that of 1200 respondents, only 6.8% reported they discussed SUDEP with the majority of their patients. 

Several epilepsy groups have advocated for disclosure of SUDEP risk. In 2009, a task force of American Epilepsy Society and Epilepsy Foundation members recommended that all patients be informed about SUDEP, said Long.

But it comes down to the "comfort level" of the provider, she said. "A great question is, how do we mandate providers to disclose this information if they're not comfortable with it?"

Long stressed that the SUDEP information sheet, promoted by the Epilepsy Foundation and used in this study, provides "well-written and accurate" information that should ease any discomfort.

"Providers should feel comfortable that the information is written at a level that's appropriate for patients to comprehend. The sheet also provides information on risk factor reduction. I think it's a great opportunity to increase awareness."

And it looks like increasing awareness might pay off. About 81% of survey respondents agreed that knowing about SUDEP would motivate them to better adhere to their medication, and 85% said it would encourage them to better manage seizure triggers, which can include sleep deprivation, stress, and alcohol.

Almost a third of respondents said they found the information on SUDEP frightening, with a trend (P = .08) for this to be more prevalent in those with generalized tonic-clonic seizures.

"But despite the fact that 30% felt that it increased their fear, 100% still felt it was their right to be informed," stressed Long.

Other research shows that most parents want to know about the SUDEP risk for their children with epilepsy, she said.

Long noted that survey respondents were not newly diagnosed with epilepsy. "These were established epilepsy patients who basically followed up with their providers here, and were comfortable with them managing their condition."

The researchers are still analyzing survey results in terms of the effect on lifestyle modifications, said Long.

Excessive Anxiety?

Commenting on the research for Medscape Medical News, Joseph Sirven, MD, chair, Department of Neurology, Mayo Clinic, Arizona, and a fellow of the AAN, called the findings "very important."

He agreed that many clinicians choose not to discuss SUDEP risks with their patients with epilepsy because they believe that disclosing such risks can lead to excessive anxiety.

"This study tells us that patients want to know the risks regardless of the risk of knowing."

And Dr Sirven also agreed that this disclosure could lead to greater motivation on the part of the epileptic patient "for greater adherence to therapy."

American Academy of Neurology 2017 Annual Meeting (AAN). Abstract S21.006. Presented April 25, 2017.

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