Have you heard of sudden unexpected death in epilepsy?

October 16, 2014, Wiley

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 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."

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 ," 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 at http://surveys.verticalresponse.com/a/show/1539433/a6bed9de39/0. Together we can advance understanding of SUDEP and how best to communicate with those challenged by this tragic outcome."

Explore further: Exploring the cause of sudden unexplained death in epilepsy

More information: "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 DOI: 10.1111/epi.12799

"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 DOI: 10.1111/epi.12666

"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 DOI: 10.1111/epi.12795

Related Stories

Exploring the cause of sudden unexplained death in epilepsy

March 25, 2013
Dravet syndrome (DS) is a form of infantile-onset, treatment-resistant epilepsy that is caused by a mutation in the gene encoding a voltage-gated sodium channel, SCN1A. DS patients have a 30-fold increased risk of dying from ...

Seizures and sudden death: When SUMO 'wrestles' potassium channels

September 3, 2014
A gene crucial for brain and heart development may also be associated with sudden unexplained death in epilepsy (SUDEP), the most common cause of early mortality in epilepsy patients.

Expert calls for awareness, research of sudden death in patients with epilepsy

November 10, 2011
Over time, epileptic seizures can lead to major health issues, including significant cognitive decline and even death, warns Orrin Devinsky, MD, professor, Departments of Neurology, Neurosurgery and Psychiatry at NYU Langone ...

Adjunctive antiepileptic drug treatment can lower risk of dying from a sudden unexpected death

September 18, 2011
New research published Online First in The Lancet Neurology, has found that epilepsy patients who receive additional treatment with antiepileptic drugs (AEDs) have about a seven times lower risk of dying from a sudden unexpected ...

Could antidepressants help reduce the risk of sudden unexpected death in epilepsy?

February 9, 2012
A groundbreaking study published in Elsevier's Epilepsy & Behavior provides evidence in mouse model that drugs known as Selective Serotonin Reuptake Inhibitors (SSRIs; one category of antidepressants) may reduce the risk ...

New clinical definition for epilepsy improves diagnosis accuracy

April 14, 2014
An expert task force has created a new definition for epilepsy that refines the scope of patients diagnosed with this brain disease. The study published in Epilepsia, a journal published by Wiley on behalf of the International ...

Recommended for you

New technique helps uncover changes in ALS neurons

June 22, 2018
Northwestern Medicine scientists have discovered that some neurons affected by amyotrophic lateral sclerosis (ALS) display hypo-excitability, using a new method to measure electrical activity in cells, according to a study ...

Broken shuttle may interfere with learning in major brain disorders

June 22, 2018
Unable to carry signals based on sights and sounds to the genes that record memories, a broken shuttle protein may hinder learning in patients with intellectual disability, schizophrenia, and autism.

Watching stem cells repair spinal cord in real time

June 22, 2018
Monash University researchers have restored movement and regenerated nerves using stem cells in zebra fish where the spinal cord is severely damaged.

Scientists discover fundamental rule of brain plasticity

June 21, 2018
Our brains are famously flexible, or "plastic," because neurons can do new things by forging new or stronger connections with other neurons. But if some connections strengthen, neuroscientists have reasoned, neurons must ...

Scientists discover how brain signals travel to drive language performance

June 21, 2018
Effective verbal communication depends on one's ability to retrieve and select the appropriate words to convey an intended meaning. For many, this process is instinctive, but for someone who has suffered a stroke or another ...

Researchers find mechanism behind choosing alcohol over healthy rewards

June 21, 2018
A new study links molecular changes in the brain to behaviours that are central in addiction, such as choosing a drug over alternative rewards. The researchers have developed a method in which rats learn to get an alcohol ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.