Webinar: “Let’s talk about Sudden Unexpected Death in Epilepsy (SUDEP): A Conversation with Parents and Doctors”
Recorded November 17, 2017
Speakers: Jeff Buchhalter, MD, PhD | Sarah Friebert, MD | Tom Stanton | Margaret Storey, PhD
One in 26 Americans will develop epilepsy, at any age, throughout their lifetime. However, new cases of epilepsy are most common in children, especially in the first year of life. Parents of children living with epilepsy should be informed of all the risks of their child’s neurologic condition – including Sudden Unexpected Death in Epilepsy (SUDEP). SUDEP is the leading epilepsy-related cause of death. Despite the serious risk of SUDEP, doctors are often hesitant to discuss it. However, studies show that families: 1) Want their doctors to tell them about the risk of SUDEP; and 2) Believe that learning about SUDEP could make a difference in how they approach seizure control.
This webinar provides participants with:
– An introduction to SUDEP, including the known causes, risk for children, how to reduce risk
– Current SUDEP research initiatives
– Strategies families can use when talking with medical providers about a child’s health risks
– The parent perspective of how to best use information about the risk for SUDEP when managing a child’s medical care
– Resources for families as they address the risk for SUDEP
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, health care providers are hesitant to discuss it. Conversely, studies report that families: 1) Want to be told about the risk of SUDEP by their healthcare providers; and 2) Believe that learning about SUDEP could make a difference in how they approach seizure control.
CNF’s Board of Directors selected SUDEP as the topic for its 2017 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 health care 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.
About the SUDEP Symposium
The 2017 CNF SUDEP Symposium* took place on October 7, in Kansas City. This SOLD OUT event brought together providers, families, and advocates.
Prior to the symposium, over 1,000 parents and caregivers completed a survey about communication between medical professionals and families about epilepsy. A survey was also distributed to CNS members to determine SUDEP knowledge and the causes of provider hesitancy to disclose the risk of SUDEP. Initial findings from these surveys were shared at the event and will also be used to help develop future programming.
Symposium topics and speakers:
- SUDEP Awareness: From the perspectives of providers and families – William H. Trescher, MD
- SUDEP in Children: What child neurologists need to know about the risk for SUDEP and how to reduce risk – Elizabeth Donner, MD, FRCPC
- State of Science: What do we know today about SUDEP? – Jeffrey Buchhalter MD, PhD
- Moderated Discussion – Perspectives: Living with the knowledge of SUDEP – Jennifer Silva & Margaret Storey, PhD
- The Art of Health Care Communication: Applying communication science to the daily practice of child neurology – Sarah Friebert, MD
- Making a Difference: Resources to help save lives – Tom Stanton
2 new SUDEP resources: “Considering a Seizure Alert Device?” and “The SPIKES Strategy” were unveiled at the event. They are available here for download.
There are at least 2,750 cases of SUDEP in the US each year–that’s 1 in 1,000 adults with epilepsy who 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 health care 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.
Clinical Guidance on SUDEP
In April 2017, the American Academy of Neurology and the American Epilepsy Society 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.
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.
Co-Sponsor/Lead Advocacy Partner:
Dravet Foundation | Finding A Cure Against Epilepsy & Seizures (FACES) | Lapham Family |Tuberous Sclerosis Alliance
CURE: Citizens United for Research in Epilepsy | Dup15q Alliance | Hope for Harper | Hope for Hypothalamic Hamartomas | Lennox-Gastaut Syndrome (LGS) Foundation | Mickie’s Miracles | PCDH19 Alliance | Phelan-McDermid Syndrome Foundation (PMSF) | Seizure Tracker | Supernus Pharmaceuticals
*Since 2015, CNF has hosted a half-day symposium during the CNS meeting that provides CME in a non-traditional 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 3 years; with positive feedback from the CNS membership.