SUDEP: Epilepsy Death Risks, Patient and Caregiver Awareness
Author: Wiley
Published: 2014/10/19 - Updated: 2026/02/25
Publication Type: Research, Study, Analysis
Category Topic: Epilepsy - Related Publications
Contents: Synopsis - Introduction - Main - Insights, Updates
Synopsis: This research, published in Epilepsia - a journal of the International League Against Epilepsy - draws on surveys of nearly 1,400 epilepsy patients and more than 600 caregivers to examine how well people understand SUDEP, or sudden unexpected death in epilepsy. Led by epidemiologist Dr. Barbara Kroner of RTI International, the study finds that awareness of SUDEP is notably higher among caregivers and those who accessed information online than among patients seen in clinical settings, and that the majority of neurologists rarely or never discuss SUDEP with their patients. The findings are directly relevant to people living with epilepsy, their families, and the clinicians who care for them, offering clear, data-backed guidance on where communication gaps exist and why closing them matters - Disabled World (DW).
- Definition: Sudden Unexpected Death in Epilepsy (SUDEP)
Sudden unexpected death in epilepsy, commonly abbreviated as SUDEP, is the sudden, unexpected, non-traumatic, and non-drowning death of a person with epilepsy in whom no toxicological or anatomical cause of death is found upon postmortem examination. It is considered the most common cause of epilepsy-related death and occurs at a rate of approximately 1 in 1,000 people with epilepsy per year, with higher rates seen in those with poorly controlled or treatment-resistant seizures. The exact mechanisms underlying SUDEP are not fully understood, but leading theories center on seizure-induced cardiac arrhythmia, respiratory dysfunction, and neurological suppression following a convulsive event. SUDEP is recognized by major neurological and epilepsy organizations worldwide as a serious public health concern, and ongoing research continues to focus on identifying at-risk populations, improving seizure management, and developing clearer clinical protocols for patient education and risk communication.
Introduction
SUDEP: Sudden Unexpected Death in Epilepsy
Sudden unexpected death in epilepsy (SUDEP) is concerning and many - even those with seizure disorders - may not be aware of this condition. New research published in Epilepsia, a journal published by Wiley on behalf of the International League Against Epilepsy (ILAE), reports that 76% of caregivers are more likely to have heard of SUDEP compared with 65% of patients with epilepsy.
Dr. Barbara Kroner, an epidemiologist with RTI International in Rockville, Maryland and lead author of the study says;
"When someone with epilepsy dies suddenly we want to understand why. Our research calls attention to SUDEP and provides important knowledge to help neurologists have open discussions with patients, especially those at greatest risk of epilepsy-related death."
Main Content
While it is obviously an overwhelming loss, SUDEP is uncommon, occurring in about 1 in 1,000 individuals with epilepsy each year. However, a study by Dr. David Thurman and colleagues also published in this issue of Epilepsia suggests that;
"Comparing years of potential life lost from SUDEP with selected other neurologic diseases, SUDEP ranks second only to stroke."
Moreover previous evidence shows that only 5% of neurologists discuss SUDEP with their all patients and 69% discuss it with few or none of their patients. One of the main reasons for this lack of communication is that doctors do not want to raise fears or anxiety in patients.
For the Kroner et al study, researchers surveyed close to 1,400 patients with epilepsy and more than 600 caregivers. Surveys were conducted via the web or in a clinical setting. The survey included questions about type of seizure, epilepsy treatment plans, fear of death, and familiarity with SUDEP. If respondents had not heard of SUDEP, a definition was provided, and questions about the initial reaction to the condition were asked.
Findings indicate that internet survey respondents were more likely to have heard about SUDEP than patients in the clinical setting at 71% and 39%, respectively. Those caring for epilepsy patients were more likely than the epilepsy patient to have heard about SUDEP (76% vs. 65%), with prior awareness associated with increased education level, more severe and longer epilepsy duration, and having an epilepsy specialist as the primary care provider.
Fear, anxiety, and sadness were often reported by epilepsy patients at caregivers upon first learning about SUDEP, with most wanting to discuss these feelings with their doctor. Knowledge of SUDEP and increase in epilepsy severity escalated the concern of death among patients and caregivers. However half of respondents thought that knowledge of SUDEP would influence management of epilepsy.
"Preventing seizures in patients with difficult to treat epilepsy may help avert sudden death," concludes Dr. Kroner. "It's important for the neurological community to continue to focus our attention on SUDEP, determining which epilepsy patients are at greatest risk and how best to educate them and their caregivers."
Drs. Gary Mathern and Astrid Nehlig, Editors-in-Chief of Epilepsia, along with Associate Editor, Dr. Dale Hesdorffer agree;
"SUDEP continues to gain considerable attention, with increasing pressure from the epilepsy community to encourage dialog between clinicians, patients and their families. In a series of SUDEP articles we start this important conversation and invite readers to participate in a SUDEP survey. Together we can advance understanding of SUDEP and how best to communicate with those challenged by this tragic outcome."
Citations:
"Characteristics of Epilepsy Patients and Caregivers Who Either Have or Have Not Heard of SUDEP." Barbara L. Kroner, Cyndi Wright, Daniel Friedman, Kim Macher, Liliana Preiss, Jade Misajon and Orrin Devinsky. Epilepsia; Published: October 16, 2014.
"Sudden Unexpected Death in Epilepsy: Assessing The Public Health Burden." David J. Thurman, Dale C. Hesdorffer and Jacqueline A. French. Epilepsia; Published: October 16, 2014.
"Knowing the Risk of SUDEP: Two family's perspectives and The Danny Did Foundation." Mark J. Stevenson and Thomas F. Stanton. Epilepsia; Published: October 16, 2014.
"Commentary: It's Time to Talk About SUDEP." Elizabeth Donner and Jeffrey Bucchalter. Epilepsia; Published: October 16, 2014.
Editorial: "SUDEP's Health Burden and When to Talk About It." Gary Mathern, Astrid Nehlig and Dale C. Hesdorffer. Epilepsia; Published: October 16, 2014.
Insights, Analysis, and Developments
Editorial Note: SUDEP remains one of the most under-addressed risks in epilepsy care, and the data here make a compelling case for change. The fact that only 5% of neurologists routinely discuss SUDEP with all of their patients - while the majority speak to few or none - points to a gap that is not rooted in ignorance of the condition but in a reluctance to raise difficult conversations. That reluctance is understandable, but the research suggests patients and caregivers, once informed, want to engage with the subject rather than avoid it. Half of those surveyed believed knowing about SUDEP would influence how their epilepsy is managed - a finding that argues strongly for candid, early dialogue between clinicians and those in their care. For the epilepsy community, and particularly for those managing difficult-to-treat seizure disorders, access to this kind of honest, evidence-based information is not a source of unnecessary fear - it is a foundation for better care - Disabled World (DW).Attribution/Source(s): This quality-reviewed publication was selected for publishing by the editors of Disabled World (DW) due to its relevance to the disability community. Originally authored by Wiley and published on 2014/10/19, this content may have been edited for style, clarity, or brevity.