Sudep sudden unexpected death in epilepsy international. Importance children with benign epilepsy with centrotemporal spikes bects have traditionally been considered to have a uniformly good prognosis. Adults, elderly, children, and infants are at risk. Accidents, sudden unexpected deaths, status epilepticus and suicides constitute a vast majority of cause of death in epilepsy. Overall, the risk of sudep among people with epilepsy is about 1. Serotonin and sudden unexpected death in epilepsy request pdf. This online edition follows on from the previous print editions of 2011, and 2005, which can be downloaded as a pdf from the website and presents the latest research while sharing the stories of families who have experienced loss through sudep. Sudden unexpected death in epilepsy sudep anyone living with a long term condition like diabetes or asthma has a slightly higher risk of sudden death. Sudden unexpected death in epilepsy seizure european journal. Sudden unexpected death in epilepsy sudep is a significant cause of death for people with epilepsy.
For example, in populationbased studies the incidence has been reported to be 0. Sudden, unexpected, witnessed or unwitnessed, nontraumatic and nondrowning death in patients with epilepsy, with or without evidence for a seizure and excluding documented status epilepticus, in which postmortem examination does not reveal a toxicologic or anatomic cause of death. Epilepsy is a long term condition and the outlook for most people is very good. Pdf on jan 1, 2011, rosemary panelli and others published sudden unexpected death in epilepsy. Sudden, unexpected death in epilepsy orrin devinsky, m. Sudden unexpected death in epilepsy sudep is probably the most common direct epilepsyrelated cause of death. Some groups of patients are at greater risk of sudep than others, although the reasons for this are only partly understood. Sudden unexpected death in epilepsy neurology clinical practice. Generalised tonicclonic seizures are the greatest risk.
Sudden unexpected death in epilepsy, periictal physiology. Sudden unexpected death in epilepsy sudep is an uncommon but tragic consequence of epilepsy. For some people living with epilepsy, the risk of sudden unexpected death in epilepsy sudep is an important concern. The majority of persons with epilepsy develop lasting remission from seizures, although mortality is significantly greater than that of the agematched general population. Most, but not all, cases of sudep occur during or immediately after a seizure. Both human and animal data suggest that specific genetic factors might play a role in some cases. Cardiopulmonary resuscitation was initiated by family members. May 21, 2018 sudden unexpected death occurs in a small number of people who have epilepsy. Sudden unexpected death in epilepsy sudep refers to the sudden death of a seemingly healthy individual with epilepsy, usually occurring during, or immediately after, a tonicclonic seizure.
Sudden unexpected death in epilepsy epilepsy australia ltd. Sudden unexpected death in epilepsy sudep is a major cause of epilepsy related mortality. Sudden unexpected death in epilepsy refers to sudden death of an individual with a clinical history of epilepsy, in whom a postmortem examination fails to uncover a gross anatomic, toxicologic, or. Sudden unexpected death in epilepsyabout epilepsy neurology. Sudden unexpected death in epilepsy most frequently occurs in people with chronic epilepsy, and seems to be a seizurerelated event. Sudep refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes. The national sentinel audit of epilepsy related deaths in 2002 recorded 1200 epilepsy related deaths annually in the uk, of which 42% were felt to be avoidable. Methods cases of suspected pediatric sudep occurring between january 1, 2014, and december 31, 2015, in ontario, canada, were eligible for inclusion. Sudden, unexpected death in epilepsy refers to a death in a patient with epilepsy. Knowledge of sudden unexpected death in epilepsy sudep. Overall, the risk of sudep among people with epilepsy is about 1 in 1,000 each year. Sudden unexpected death in epilepsy sudep is a leading cause of mortality associated with epilepsy. Objective to determine the incidence of sudden unexpected death in epilepsy sudep in children in ontario, canada. A consistent feature is that most of these deaths are unwitnessed.
Unifying the definitions of sudden unexpected death in. Epidemiological studies have identified clinical sudep risk factors across large populations, but the means to apply this information to individual patients are lacking. Sudden unexpected death in epilepsy sudep represents the most severe degree of the spectrum of epilepsy severity and is the commonest cause of epilepsy related premature mortality. People most at risk are those with severe frequent seizures.
Pdf sudden unexpected death in epilepsy in children. Appendix e6, cited in the full guideline data supple ment, is available at. This sudden unexpected death in epilepsy sudep is uncommon and in some cases may be preventable. Objectivessudden unexpected death in epilepsy sudep represents a significant category of mortality in the population with chronic epilepsy. When an autopsy is done, no other of cause of death can be found. Objectives sudden unexpected death in epilepsy sudep represents a significant category of mortality in the population with chronic epilepsy. A 57yearold man with severe mental retardation and epilepsy was found unresponsive. The past, present and future challenges in epilepsy related and sudden deaths and biobanking thom m, boldrini m, bundock e, et al. She did not witness either generalized tonicclonic seizures or trauma. Patients with epilepsy have an increased mortality rate compared to the general population, to which sudden unexpected death in epilepsy sudep is a major contributor. Sudep has received considerable examination over the last 10 years with a revision of the definition, an attempt to more accurately estimate the true incidence, a better understanding of the mechanisms and risk factors leading to death, and how the.
The incidence of sudden death in patients with epilepsy is significantly higher and varies markedly with the population studied5. Epilepsy is associated with a higher rate of premature death than the general population, and the commonest cause of epilepsy mortality is sudden unexpected death in epilepsy sudep. Sudden unexpected death in epilepsy sudep can affect individuals of any age, but is most common in younger adults aged 2045 years. A nationwide populationbased casecontrol study, sveinsson et al. The frequency of sudep varies depending on the severity of the epilepsy, but overall the risk of sudden death is more than 20 times higher than that in the general population. Sudden unexpected death in epilepsy sudep is a fatal complication of epilepsy. It is defined as the sudden and unexpected, nontraumatic and nondrowning death of a person with epilepsy, without a toxicological or anatomical cause of death detected during the postmortem examination. Sudden unexpected death in epilepsy danny did foundation. This document summarizes information provided in the complete guideline, available at. Aug 11, 2009 sudden unexpected death in epilepsy most frequently occurs in people with chronic epilepsy, and seems to be a seizurerelated event. The substantial lifetime risk of sudep and the lack of a clear pathophysiological connection between epilepsy itself and sudden death have fuelled increased attention to this phenomenon. The aim was to identify witnessed deaths, examine the circumstances, and relate these findings to the proposed mechanisms for sudep.
All individuals in iceland with epilepsy who died unexpectedly from january 1, 1991 through december 31, 2010 were included. We determined the incidence of sudep in the entire icelandic population during a 20. For example, it is not due to injury or to drowning following or during a seizure and it is not due to a. They examined the national registry of sweden, which contains information on all patients seen in a swedish hospital with the goal of identifying what features are particularly important in predicting. Feb 24, 2020 sudep is defined as sudden, unexpected, nontraumatic, nondrowning death in an individual with epilepsy, witnessed or unwitnessed, in which postmortem examination does not reveal an anatomic or toxicologic cause for the death. Sudden unexpected death in epilepsy among patients with. The magnitude of the problem of sudden unexplained death in epilepsy is unrecognized in both the medical and lay communities. Sudep awareness has grown and practice guidelines have been developed. Its incidence rates are agedependent and amount to 0. People who have had 2 seizures without a clear trigger or one seizure and a high risk of more seizures in the future have epilepsy. Sudden unexpected death in epilepsyabout sudep neurology. Mechanisms and new methods for analyzing risks builds on earlier works focusing on the clinical problem of sudden unexpected death in epilepsy sudep. Sudden unexpected death in epilepsy epilepsy society. Sudden unexpected death in epilepsy pdf ammedicine.
This book presents a methodology for identifying and classifying clusters of risks that lead to sudep. Pdf sudden unexpected death in epilepsy ley sander. Sudden unexpected death in epilepsy is the most common category of seizurerelated death for patients who develop chronic epilepsy, accounting for up to 17% of epilepsy deaths. The most common epilepsyrelated category of death is sudden unexpected death in epilepsy sudep, accounting for up to one fifth of epilepsy deaths in some. Sudep is highly linked to seizures, with most deaths occurring after convulsive seizures in sleep. Recent research suggests that multiple factors may contribute and that both cardiac and respiratory mechanisms are involved. Preventing seizures as much as possible with treatment may reduce the risk of sudden death.
The primary caretaker said that he was on the toilet, rolled his eyes, and stopped breathing. Sudden unexpected death in epilepsy sudep is the most common cause of death in patients with intractable epilepsy. Pdf sudden unexpected death in epilepsy sudep is the most common cause of death directly related to epilepsy, and most frequently occurs in people. Sudep is sudden unexpected death in someone with epilepsy, who was otherwise well, and in whom no other cause for death can be found, despite thorough post mortem examination and blood tests. A sudden death in an individual with epilepsy with a clear cause of death other than sudep e. Of the deaths that are thought to be directly related to seizures, sudden unexpected death in epilepsy is probably the commonest category. The cause of sudep is not known, but oft en occurs during, or right aft er a seizure. Pdf sudden unexpected death in epilepsy is death by. Sudden unexpected death in epilepsy sudep is probably the most common direct epilepsy related cause of death. Pdf sudden unexpected death in epilepsy esper cavalheiro. Appendix e6, cited in the full guideline data supplement, is available at. Sudden unexpected death in epilepsy sudep epilepsy. Sudden unexpected death in epilepsy is defined as a sudden, unexpected, nonaccidental death in an individual with epilepsy with or without evidence of a seizure having.
Sudep sudden unexpected death in epilepsy is a known risk to people with epilepsy. This can be defined as a sudden, unexpected death in a person with epilepsy, with or without evidence for a seizure preceding the death, in which there is no evidence of other disease, injury, or drowning that caused the death. Sudden unexpected death in epilepsy sudep is the leading diseaserelated cause of mortality among people with seizure disorders. Of the deaths that are thought to be directly related to seizures, sudden unexpected. For many people, epilepsy is a condition which can be wellmanaged and has little or no impact on their life. Abstractpatients with refractory epilepsy face an elevated risk of sudden death, with rates as high as 1% per year. Sudden unexpected death in epilepsy sudep is a poorly understood and catastrophic risk of epilepsy. Most sudep cases occur during or immediately after a seizure. For others, ongoing seizures mean that epilepsy has a longterm impact on them and their ability to have a normal life. There may be obvious signs a seizure has happened, though this isnt always the case. The frequency of sudep varies depending on the severity of the epilepsy, but overall the risk of sudden death is more than 20 times higher than that. Request pdf serotonin and sudden unexpected death in epilepsy epilepsy is a highly prevalent disease characterized by recurrent, spontaneous seizures. Sudep is defined as sudden, unexpected, nontraumatic, nondrowning death in an individual with epilepsy, witnessed or unwitnessed, in which postmortem examination does not reveal an anatomic or toxicologic cause for the death. Incidence of sudden unexpected death in epilepsy in children.
Sudep deaths are often unwitnessed with many of the deaths occurring overnight during sleep. Sudden unexpected death in epilepsy neurology clinical. Sudep is defined as the sudden, unexpected, witnessed or unwitnessed, non traumatic, and nondrowning death in patients with epilepsy with or without. There are a number of causes of increased mortality related to epilepsy, including those that are a direct cause accidental death, sudden unexpected death in epilepsy sudep, status epilepticus and those that are epilepsy related underlying brain diseases or comorbidities, suicides, complications of antiepileptic therapy. Previously called sudden unexplained death, sudep is defined as a sudden and unexpected nontraumatic or nondrowningrelated death in a person with epilepsy which may or may not associated with a recent seizure 2. Both pulmonary and cardiac pathophysiologies have been proposed. Unifying the defi nitions of sudden unexpected death in epilepsy. The sensitive nature of discussions of this infrequent but important risk with patients and families has prompted the need for evidencebased information about sudep.
Sudden unexpected death in epilepsy sudep is the most frequent directly epilepsy related cause of premature death in people with epilepsy. Sudden unexpected death in epilepsy incidence rates and risk factors report of the guideline development, dissemination, and implementation subcommittee of the american academy of neurology and the american epilepsy society. The researchers set out to understand more about the condition of sudden death that can happen in people who have epilepsy sudden unexpected death in epilepsy sudep. An epilepsy center is a special area within a clinic or hospital providing expert care for people with epilepsy and seizures. Sudden unexpected death in epilepsy pubmed central pmc. Sudden unexpected death in epilepsy continuing the conversation online resource was launched in december 2014. However, benign may be a misnomer because bects is linked to cognitive deficits, a more severe phenotype with intractable seizures, and the potential for sudden unexpected death in epilepsy sudep. Pediatric sudden unexpected death in epilepsy pediatric neurology. Mortality rates are considerably higher in people with epilepsy than would be expected in a healthy population. A seizure may cause a person to have pauses in breathing apnea. The death is not known to be related to an accident or seizure emergency such as status epilepticus. Generalised tonicclonic seizures are the greatest risk factor for sudep. Sudep excludes other forms of seizurerelated sudden death that might be mechanistically related eg, death after single febrile, unprovoked. Sudden unexpected death in epilepsy postgraduate medical.
Sudden unexpected death in epilepsy sudep is a significant public health burden. The incidence of sudden unexpected death in epilepsy sudep varies between studies. Sudden unexplained death sudep in epilepsy is often listed as a cause of death, accounting for 717% of deaths among the general population with epilepsy and perhaps 50% among patients with refractory epilepsy. Sudden unexpected death in epilepsy is death by seizures a cardiac disease. This phenomenon, known as sudden unexpected death in epilepsy sudep, is believed to be a seizurerelated occurrence, but the exact underlying mechanisms are uncertain.
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