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. Due to CNF’s service as a convener in 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.
NEW! SUDEP Resources for 2018 Pilot Project: Utilizing the CHICA® System to Enhance SUDEP Disclosure Conversations
CNF is working with Digital Health Solutions LLC and Greenwich Biociences Inc. to design and implement a high-tech tool, through Child Health Improvement through Computer Automation (CHICA)®. This project aims to automatically generate SUDEP risk screening during routine primary care visits. Learn more.
During project planning, a need in the community was identified — to develop new or revised patient education materials on SUDEP, as well as seizure action plans. In response, CNF convened two other advocacy partners, Danny Did Foundation and SUDEP Institute/Epilepsy Foundation, along with two leading pediatric epileptologists and Digital Health Solutions to co-create these materials. In addition to their integration into the CHICA® system, they are now available in English and Spanish for download:
*We encourage a conversation with your neurologist to determine whether the low risk or high risk SUDEP information sheet is most applicable to you or your loved one.
See below for additional SUDEP resources: “Considering a Seizure Alert Device” and “The SPIKES Strategy”
2017 Annual Education Initiative: SUDEP Symposium
CNF’s Board of Directors selected SUDEP as the topic for its 2017 symposium* during the Child Neurology Society (CNS) annual meeting and Danny Did Foundation to served as a lead advocacy partner. The 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 shared with participants and are available here for download.
*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.
Webinar. “Let’s talk about SUDEP: A Conversation with Parents and Doctors”
Speakers: Jeff Buchhalter, MD, PhD | Sarah Friebert, MD | Tom Stanton | Margaret Storey, PhD (Recorded November 17, 2017)
– 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
The 2017 Annual Education Initiative on SUDEP was supported by: Danny Did Foundation, Lundbeck, Greenwich Biosciences, Sunovion, and the Epilepsy Foundation. With our partners: 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
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.