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 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.
SUDEP Resources & Tools
*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.
SUDEP: Understanding The Risks
Pediatric epileptologist Dr. Jeffrey Buchhalter was brought into the SUDEP community a decade ago by a parent who lost her son at age 21. He was involved in starting the first Partners Against Mortality in Epilepsy meetings and is the co-author of the SUDEP Guidelines for the American Academy of Neurology.
In this video, Dr. Buchhalter goes over SUDEP and the risk factors, steps caregivers can take to reduce the risk and answers a question from our community about ensuring a child has independence while the parent has peace of mind.
This video is part of the series Healthy Epilepsy Management, multi-part video series produced in 2021 about healthy epilepsy management focuses on what we heard from partners and families in our community as a top priority. Watch the rest of the videos here.
“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
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.
SUDEP and CHICA-CN
The research article covering a recent pilot study, funded by Digital Health Solutions through a grant provided by CNF, finds that discussions between clinicians and families about SUDEP significantly increased after introducing a systematic, computerized screening and decision support module – Child Health Improvement through Computer Automation (CHICA).
Our CEO and Executive Director Amy Brin and CNF President Anup Patel are among the authors of the article.
Why Child Neurologists Do, Or Do Not, Talk About SUDEP With Their Patients
New research, funded in part by the Child Neurology Foundation, offers key insights about how and why child neurologists discuss SUDEP with their patients living with epilepsy or their caregivers.
This research, available online on the open access journal Epilepsia Open, found that most child neurologists do not follow the current SUDEP Clinical Practice Guideline regarding SUDEP discussion. The paper explores the factors, attitudes and opinions associated with discussion practice including whether the child neurologist believes that talking about SUDEP with a patient or family can provoke excessive anxiety or worry and if healthcare providers have an ethical obligation to talk about SUDEP. It also discusses how time constraints and feeling sufficiently knowledgeable about the SUDEP impacts discussions.
SUDEP & Child Health Improvement through Computer Automation
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.
When we surveyed families, we learned that a majority of families wanted to discuss their child’s risk of SUDEP with their pediatric neurologists, but instead were more likely to go to a peer or the internet. But these conversations were only happening around 20% of the time.
With our 2018 pilot project and introduction of the CHICA support module, we saw an increase in SUDEP discussions from 21% to 46% in just six weeks. This type of change is unprecedented in SUDEP. We know the risk of SUDEP decreases by managing epilepsy well – not just through medication but with behavior changes.
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, 2017 in Kansas City.
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 Pharmaceutical.