#AimForZero
Communication may save lives

Taking the Critical First Step

Despite how often SUDEP occurs, healthcare providers are hesitant to discuss SUDEP with people with epilepsy.

According to Wendy Miller, PhD, RN, CCRN, assistant professor, Department of Science of Nursing Care at Indiana University School of Nursing, "The consequence of providers' hesitance to discuss SUDEP is that patients and their family members are uninformed about the possibility of sudden death due to epilepsy, whether from SUDEP or other causes of epilepsy-related mortality (e.g., status epilepticus, accidental drowning, suicide). For example, several medical examiners told us that they avoid SUDEP on death certificates since they have occasionally had families who are adamant that their neurologists told them that seizures are never fatal."1

What People with Epilepsy and Caregivers Think

Survey results showed that 95% of caregivers of people with epilepsy worry about the person in their care dying from epilepsy or seizures. When asked about SUDEP awareness, however, the majority of both people with epilepsy and caregivers reported that they had not had a discussion about SUDEP with a healthcare provider.

Importantly, 40% of respondents with epilepsy stated that learning more about SUDEP could make a difference in how they approach seizure control. And, nearly half of the respondents who were caregivers stated that learning more about SUDEP could make a difference. These respondents stated that the knowledge could positively impact seizure management in caring for people with epilepsy.

#AimForZero. Talk about SUDEP.

Resources for Professionals

One of the primary initiatives of Epilepsy Foundation SUDEP Institute is to drive SUDEP education and awareness programs to people touched by epilepsy and to medical professionals.

Current resources include:

Learn about other resources and SUDEP webinars and presentations. Connect with your local Epilepsy Foundation for additional information and support.

Learning more about SUDEP could make a difference in how people with epilepsy approach seizure control

Reference

1. Miller WR, Young N. Discussing Sudden Unexpected Death in Epilepsy (SUDEP) with Patients: Practices of Health-Care Providers. Epilepsy Behav. 2014 Mar: 32: 38-41. Available online at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3985269/.

Authored by: The Epilepsy Foundation SUDEP Institute on 9/2016
Expert Insight

How can talking to your doctor help reduce SUDEP risk?

Jacqueline French

"Over time doctors, and particularly epilepsy specialists, have come to realize that it is important to discuss SUDEP and other seizure risks with people with epilepsy, even though the conversation can be difficult. The discussion about SUDEP needs to be done at a time when people are ready to absorb this information. It is important to emphasize that the risk is low, but is not zero, and that people can reduce their own personal risk by taking their medication and aiming for seizure freedom."

— Jacqueline French, MD

Philippe Ryvlin, MD, PhD

"People with epilepsy can enhance the level of communication with their physician by being proactive in addressing these issues during outpatient visits."

— Philippe Ryvlin, MD, PhD, Professor Neurology, Lyon University, France

Joseph Sirven, MD

"The best action is to keep yourself informed about everything there is to know about your epilepsy. Work with your doctor to develop a treatment plan and stick to it."

— Joseph Sirven, MD, epilepsy.com Editor-in-chief and Professor of Neurology and Chairman of the Department of Neurology, Mayo Clinic, Arizona