SUDEP Symposium and Education Initiative
Every year, 1 in 150 people who have uncontrolled seizures dies from Sudden Unexpected Death in Epilepsy (SUDEP). It is the leading epilepsy-related cause of death. Despite the serious this risk of SUDEP, healthcare providers are hesitant to discuss it. Conversely, studies report that families:
- Want to be told about the risk of SUDEP by their healthcare providers.
- Believe that learning about SUDEP could make a difference in how they approach seizure control.
In 2017, CNF’s Board of Directors selected SUDEP as the topic for its half-day symposium during the Child Neurology Society (CNS) annual meeting. Due to CNF’s service as a collaborative center for the child neurology community, it is ideally situated to explore the existing chasm between healthcare provider’s reluctance to discuss the risk of SUDEP and the families’ desire to be more aware. In this pursuit, CNF asked Danny Did Foundation to serve as its lead advocacy partner.
There are at least 2,750 cases of SUDEP in the United States each year. This means 1 in 1,000 adults with epilepsy die as a result of SUDEP annually. The risk for children is lower. SUDEP affects 1 in 4,500 children with epilepsy each year. Children and adults with uncontrolled seizures have the greatest risk for SUDEP.
SUDEP is associated with generalized tonic-clonic seizures, and is less likely after focal seizures. Experts agree the best way to reduce the risk of SUDEP is to lower the number of generalized tonic-clonic seizures. When managing a child’s epilepsy regimen, it is important for healthcare providers to incorporate a family’s goals of care, while weighing the risks and benefits of any new therapy. For children with frequent generalized tonic-clonic seizures and nocturnal seizures, families should talk to their healthcare providers about watching their child during sleep, which can include the use of a remote listening or seizure alert device. Learn more about epilepsy and SUDEP.
The American Academy of Neurology and the American Epilepsy Society recently published “Practice Guideline: Sudden Unexpected Death in Epilepsy Incidence Rates and Risk Factors” in Neurology®. As part of this effort they created a patient video as a tool to help support conversations about SUDEP.
About the SUDEP Symposium
The 2017 CNF SUDEP Symposium will take place Saturday, October 7th from 1:00-4:30 pm in Kanas City, Missouri. Registration will open in July .
This four-hour symposium will bring together healthcare providers, families, and advocates. Topics included in the 2017 symposium include:
- Overview of SUDEP, including key risk factors and prevention strategies
- Review current SUDEP research findings
- Patient and family stories of living with knowledge of SUDEP risk
- Communication techniques for engaging in difficult conversations without creating fear
Since 2015, CNF hosts a half-day symposium during the CNS meeting that provides CME in a non-traditional CME format. Each year, the symposium brings together parents, patients, advocates, and fellow physicians to provide a unique education experience. This symposium has become popular since its inception, selling out the past two years; with positive feedback from the CNS membership about this innovative learning format. You can learn more about the CNF 2016 program via their Flipbook on page 16-17.
Additional SUDEP Education Efforts
To gain a deeper understanding of family experience and awareness around SUDEP, CNF is also collaborating with several organizations to survey families. Simultaneously, due to its partnership with CNS, a survey will be distributed to CNS members to determine SUDEP knowledge and the causes of their hesitancy to disclose the risk of SUDEP. Initial findings from these surveys will be shared at the SUDEP symposium and will be used to help develop future programming. CNF’s goal is to increase child neurologists’ understanding of SUDEP and the rate of SUDEP disclosure to families.
Additional educational efforts will include enduring education material and a November 2017 webinar geared to families.
CNF asserts the critical value of child neurology professionals, advocates and parents working as partners in the delivery of quality care to every child. To that end, all CNF’s educational modalities are interdisciplinary and bring stakeholder groups together to educate one another. We believe this is a vital contribution to the child neurology community, as it addresses the chasm often existing between these groups regarding key issues, such as treatment options, services, and goals of care.
The SUDEP Symposium and Education Initiative would not be possible without our partners.
For more information about becoming a partner or CNF SUDEP effort, contact us.
Finding A Cure Against Epilepsy & Seizures (FACES)
Tuberous Sclerosis Alliance
Citizens United for Research in Epilepsy (CURE)
Hope for Harper
Hope for Hypothalamic Hamartomas
Lennox-Gastaut Syndrome (LGS) Foundation
Phelan-McDermid Syndrome Foundation (PMSF)