Pdf sudden unexpected death in epilepsy ley sander. Sudden unexpected death in epilepsy seizure european journal. The primary caretaker said that he was on the toilet, rolled his eyes, and stopped breathing. Sudden unexpected death in epilepsy pdf ammedicine. Request pdf serotonin and sudden unexpected death in epilepsy epilepsy is a highly prevalent disease characterized by recurrent, spontaneous seizures. Importance children with benign epilepsy with centrotemporal spikes bects have traditionally been considered to have a uniformly good prognosis. Sudden unexpected death in epilepsy sudep is the most frequent directly epilepsy related cause of premature death in people with epilepsy.
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. Sudden, unexpected death in epilepsy refers to a death in a patient with epilepsy. Its incidence rates are agedependent and amount to 0. We determined the incidence of sudep in the entire icelandic population during a 20. Generalised tonicclonic seizures are the greatest risk factor for sudep. 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. 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. The cause of sudep is not known, but oft en occurs during, or right aft er a seizure. 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. Objective to determine the incidence of sudden unexpected death in epilepsy sudep in children in ontario, canada. Some groups of patients are at greater risk of sudep than others, although the reasons for this are only partly understood. Pdf sudden unexpected death in epilepsy researchgate. 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.
Incidence of sudden unexpected death in epilepsy in children. Sudep is defined as the sudden, unexpected, witnessed or unwitnessed, non traumatic, and nondrowning death in patients with epilepsy with or without. Sudep awareness has grown and practice guidelines have been developed. Sudden unexpected death in epilepsyabout sudep neurology. Objectivessudden unexpected death in epilepsy sudep represents a significant category of mortality in the population with chronic epilepsy. Adults, elderly, children, and infants are at risk. Sudden unexpected death in epilepsy postgraduate medical. Sudden unexpected death in epilepsy continuing the conversation online resource was launched in december 2014. 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. Preventing seizures as much as possible with treatment may reduce the risk of sudden death.
This book presents a methodology for identifying and classifying clusters of risks that lead to sudep. Sudden unexpected death in epilepsy sudep is the leading diseaserelated cause of mortality among people with seizure disorders. Sudep sudden unexpected death in epilepsy is a known risk to people with epilepsy. All individuals in iceland with epilepsy who died unexpectedly from january 1, 1991 through december 31, 2010 were included. Sudden unexpected death in epilepsyabout epilepsy neurology. This phenomenon, known as sudden unexpected death in epilepsy sudep, is believed to be a seizurerelated occurrence, but the exact underlying mechanisms are uncertain. Knowledge of sudden unexpected death in epilepsy sudep. Sudden unexpected death in epilepsy sudep is a poorly understood and catastrophic risk 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. The magnitude of the problem of sudden unexplained death in epilepsy is unrecognized in both the medical and lay communities. Sudep excludes other forms of seizurerelated sudden death that might be mechanistically related eg, death after single febrile, unprovoked. Sudden, unexpected death in epilepsy orrin devinsky, m. People most at risk are those with severe frequent seizures.
Sudden unexpected death in epilepsy sudep is the most common cause of death in patients with intractable epilepsy. 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. 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. She did not witness either generalized tonicclonic seizures or trauma.
Appendix e6, cited in the full guideline data supplement, is available at. For example, it is not due to injury or to drowning following or during a seizure and it is not due to a. Pdf sudden unexpected death in epilepsy is death by. This document summarizes information provided in the complete guideline, available at. Mechanisms and new methods for analyzing risks builds on earlier works focusing on the clinical problem of sudden unexpected death in epilepsy sudep. 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.
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. 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. Sudep deaths are often unwitnessed with many of the deaths occurring overnight during sleep. Overall, the risk of sudep among people with epilepsy is about 1 in 1,000 each year. Pdf on jan 1, 2011, rosemary panelli and others published sudden unexpected death in epilepsy. 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. Mortality rates are considerably higher in people with epilepsy than would be expected in a healthy population. Both human and animal data suggest that specific genetic factors might play a role in some cases. 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.
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. A seizure may cause a person to have pauses in breathing apnea. For others, ongoing seizures mean that epilepsy has a longterm impact on them and their ability to have a normal life. 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. Accidents, sudden unexpected deaths, status epilepticus and suicides constitute a vast majority of cause of death in epilepsy.
Sudden unexpected death in epilepsy neurology clinical. The incidence of sudden death in patients with epilepsy is significantly higher and varies markedly with the population studied5. 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. Generalised tonicclonic seizures are the greatest risk.
Most sudep cases occur during or immediately after a seizure. Unifying the definitions of sudden unexpected death in. 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. 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 majority of persons with epilepsy develop lasting remission from seizures, although mortality is significantly greater than that of the agematched general population. 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. Most, but not all, cases of sudep occur during or immediately after a seizure. Sudden unexpected death in epilepsy sudep is a fatal complication of epilepsy. An epilepsy center is a special area within a clinic or hospital providing expert care for people with epilepsy and seizures. Both pulmonary and cardiac pathophysiologies have been proposed. Sudep is highly linked to seizures, with most deaths occurring after convulsive seizures in sleep.
Aug 11, 2009 sudden unexpected death in epilepsy most frequently occurs in people with chronic epilepsy, and seems to be a seizurerelated event. Pdf sudden unexpected death in epilepsy in children. When an autopsy is done, no other of cause of death can be found. 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. Sudden unexpected death in epilepsy neurology clinical practice. 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.
The sensitive nature of discussions of this infrequent but important risk with patients and families has prompted the need for evidencebased information about sudep. Sudep sudden unexpected death in epilepsy international. Sudden unexpected death in epilepsy most frequently occurs in people with chronic epilepsy, and seems to be a seizurerelated event. Pdf sudden unexpected death in epilepsy sudep is the most common cause of death directly related to epilepsy, and most frequently occurs in people. May 21, 2018 sudden unexpected death occurs in a small number of people who have epilepsy. Of the deaths that are thought to be directly related to seizures, sudden unexpected. Overall, the risk of sudep among people with epilepsy is about 1. There may be obvious signs a seizure has happened, though this isnt always the case. 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.
The death is not known to be related to an accident or seizure emergency such as status epilepticus. For example, in populationbased studies the incidence has been reported to be 0. Sudden unexpected death in epilepsy sudep is a significant public health burden. Unifying the defi nitions of sudden unexpected death in epilepsy. Sudden unexpected death in epilepsy sudep epilepsy. Sudden unexpected death in epilepsy epilepsy society. 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. A consistent feature is that most of these deaths are unwitnessed. 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.
Pediatric sudden unexpected death in epilepsy pediatric neurology. Sudden unexpected death in epilepsy epilepsy australia ltd. The incidence of sudden unexpected death in epilepsy sudep varies between studies. Sudden unexpected death in epilepsy, periictal physiology. A nationwide populationbased casecontrol study, sveinsson et al. 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. Sudden unexpected death in epilepsy sudep is a leading cause of mortality associated with epilepsy. 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. A sudden death in an individual with epilepsy with a clear cause of death other than sudep e.
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 sudep is a major cause of epilepsy related mortality. Objectives sudden unexpected death in epilepsy sudep represents a significant category of mortality in the population with chronic epilepsy. Sudden unexpected death in epilepsy danny did foundation. A 57yearold man with severe mental retardation and epilepsy was found unresponsive. Epilepsy is a long term condition and the outlook for most people is very good. Serotonin and sudden unexpected death in epilepsy request pdf. Of the deaths that are thought to be directly related to seizures, sudden unexpected death in epilepsy is probably the commonest category.
The past, present and future challenges in epilepsy related and sudden deaths and biobanking thom m, boldrini m, bundock e, et al. 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. Pdf sudden unexpected death in epilepsy esper cavalheiro. 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.
Sudden unexpected death in epilepsy is death by seizures a cardiac disease. Appendix e6, cited in the full guideline data supple ment, is available at. Abstractpatients with refractory epilepsy face an elevated risk of sudden death, with rates as high as 1% per year. For many people, epilepsy is a condition which can be wellmanaged and has little or no impact on their life. Sudden unexpected death in epilepsy sudep is an uncommon but tragic consequence of epilepsy. 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 is probably the most common direct epilepsyrelated cause of death. Sudden unexpected death in epilepsy among patients with. For some people living with epilepsy, the risk of sudden unexpected death in epilepsy sudep is an important concern. Sudep refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes. Recent research suggests that multiple factors may contribute and that both cardiac and respiratory mechanisms are involved. Sudden unexpected death in epilepsy sudep is probably the most common direct epilepsy related cause of death. Sudden unexpected death in epilepsy pubmed central pmc. Cardiopulmonary resuscitation was initiated by family members.
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