Forensic considerations in sudden unexpected death in epilepsy. Sudden unexpected death in epilepsy sudep has been known, at least to a small body of the medical profession, for at least 80 years 16. A risk for sudden death in epilepsy that often goes. Abstractpatients with refractory epilepsy face an elevated risk of sudden death, with rates as high as 1% per year. Nashef definition of sudden unexpected death in epilepsy sudep 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. Expanding on the 1990 book epilepsy and sudden death, edited by lathers and schraeder, sudden death in epilepsy. Predicting sudden death from epilepsy epilepsy foundation. When an autopsy is done, no other of cause of death can be found. Epilepsy patients can reduce their risk of sudden death by taking precautionary steps such as reducing the number of seizures and taking medicine properly, a study suggests. 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 death is a real problem in the management of epilepsy and is now perhaps the commonest category of seizurerelated death in patients with chronic epilepsy, often affecting young adults in this group. Pdf people with epilepsy have increased risk of premature death, and their life expectancy may reduce by 210 yr. Dravet syndrome ds is an infantileonset intractable epilepsy caused by heterozygous lossoffunction mutations in the scn1a gene, which encodes brain typei voltagegated sodium. Sudden unexpected death in epilepsy postgraduate medical.
Unifying the definitions of sudden unexpected death in. Epilepsy is a common neurological disorder associated with increased morbidity and mortality, including premature death from different causes. Precisely when sudep entered the consciousness of the greater public cannot be known, but it has arrived so far as the courts are concerned. Relevant and independent risk factors are difficult to establish given the nonindependence of patient, syndrome, seizures and treatment characteristics. This book presents a methodology for identifying and classifying clusters of risks that lead to sudep. Prior studies of sudep have described a wide range of incidence and have suffered from selection bias and other methodologic limitations. If trauma, drowning and a documented status epilepticus are excluded and autopsy does not reveal an anatomical or toxicological cause for death, such deaths are. Clinical chapters study the sophisticated simultaneous ambulatory ekg and eeg telemetry and respiratory function monitoring of patients at. The incidence of sudden death in young adults with epilepsy is reported to be 27 times higher than the incidence of sudden death in control populations. Epilepsy is the most common serious neurological condition, affecting almost 60 million people worldwide. Sudden unexpected death in epilepsy pdf ammedicine.
Pdf sudden unexpected death in epilepsy researchgate. Its incidence rates are agedependent and amount to 0. This phenomenon, known as sudden unexpected death in epilepsy sudep, is believed to be a seizurerelated occurrence, but the exact underlying mechanisms are uncertain. More than onethird of the people in the united states who have epilepsy are at risk for a deadly complication called sudden unexpected death in epilepsy. In a widely acclaimed bbc production, the lost prince, the short and tragic life of prince john, son of britains king george v and queen mary, and his sudden death in the early 20th century emerged from the shadows in which he had been hidden.
Both pulmonary and cardiac pathophysiologies have been proposed. 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 while the mechanisms underlying sudep are still poorly understood, it is possibly the most common cause of. For example, it is not due to injury or to drowning following or during a seizure and it is not due to a. People with epilepsy may be two to three times more at risk of dying prematurely as a result of their illness when compared to a normal population, and sudden death in people with epilepsy is over 20 times more frequent than in the general population. Patients with epilepsy have a small risk of sudden unexpected death, a condition referred to as sudden unexpected death in epilepsy sudep. Knowledge of sudden unexpected death in epilepsy sudep. Epilepsy affects over 50 million individuals worldwide.
Sudden unexpected death in epilepsy sudep is the most common cause of death in intractable epilepsies, but physiological mechanisms that lead to sudep are unknown. Sudden unexpected death in epilepsy sudep minnesota. Forensic considerations in sudden unexpected death in. This observation is particularly significant as lamotrigine is increasingly recommended for the treatment of generalized epilepsy in women. Early death rates are higher in patients with epilepsy compared to the general population. True incidence is unknown and risk factors are not completely understood, more so in children compared with adults. Pdf sudden unexpected, unexplained death in epilepsy.
Sudden unexpected death in epilepsy seizure european journal. The ukbased organisation epilepsy bereaved works to inform and r aise awareness of sudep and other epilepsyrelated deaths, promote research, and provide information and support to people affected by an epilepsyrelated death. Sudden unexpected death in epilepsy sudep is a fatal complication of epilepsy. The sudden death of a parent or sibling is a great tragedy for a child, with many consequences.
Sudden unexpected death in epilepsy sudep is the leading cause of premature mortality in patients with refractory epilepsy, but the underlying mechanisms and the predictors of patient risk remain an active area of research. Comparison of heart mass in seizure patients dying of. To determine the populationbased incidence of sudden unexplained death in epilepsy sudep and to determine the risk of sudep compared with the general population. Sudden unexpected death in epilepsy sudep in new zealand. 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.
The aim was to identify witnessed deaths, examine the circumstances, and relate these findings to the proposed mechanisms for sudep. In the case of proven or suspected sudden cardiac death, one obvious question is whether the same. 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. Relevant and independent risk factors are difficult to establish given the non independence of patient, syndrome, seizures and treatment characteristics. 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 orrin devinsky, m. The magnitude of the problem of sudden unexplained death in epilepsy is unrecognized in both the medical and lay communities. Prevention of sudden unexpected death in epilepsy danny did. Objectives sudden unexpected death in epilepsy sudep represents a significant category of mortality in the population with chronic epilepsy.
The incidence of sudden unexpected death in epilepsy. 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 death is not known to be related to an accident or seizure emergency such as status epilepticus. A populationbased study of the incidence of sudep has never been. Unifying the defi nitions of sudden unexpected death in epilepsy. Epilepsy, sudden death, antiepileptic drugs, risk factors, sleep. Sudden unexpected death in epilepsy sudep in children, although rare, needs critical attention given the tragic nature and devastating consequences for families and caregivers. Sudden unexpected death in epilepsy among patients with. Rugggunn, lina nashef, in blue books of neurology, 2009. A sudden death in an individual with epilepsy with a clear cause of death other than sudep e.
The incidence of sudden unexpected death in epilepsy sudep depends on the population under study. Ten years of work has seen a dram atic shift in thinking and practice on sudep in the uk. Simple device could help stop sudden unexpected death in. Notably, some studies presume that deaths without evidence of trauma or pathologic disease are due to arrhythmia. For some people living with epilepsy, the risk of sudden unexpected death in epilepsy sudep is an important concern.
They are the only uk charity specialised in supporting and involving people bereaved by epilepsy. Sudden death in epilepsy is a littleknown and seldommentioned phenomenon, but now, after a push by advocates, the federal government has begun a concerted program to understand it. Some of this excess mortality is attributable to sudden unexpected death. A substantial proportion of deaths in epilepsy happen suddenly. 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. Sudden death and epilepsy the views and experiences of bereaved relatives and carersreport 2002. Epilepsy is a risk factor for sudden cardiac arrest in the. A consistent feature is that most of these deaths are unwitnessed. Sudden unexpected death in epilepsy sudep can be defined as. Risk of sudden unexpected death in epilepsy in patients given adjunctive antiepileptic treatment for refractory seizures. Sudep incidents are approximately 1 in people with epilepsy annually more than 10 times the sudden death rate found in the general population. Sudden unexpected death in epilepsy epilepsy society.
Some groups of patients are at greater risk of sudep than others, although the reasons for this are only partly understood. Risk factors for sudden unexpected death in epilepsy. Patients with epilepsy have a mortality rate higher than that of the general population. Chronic ambulatory electrocorticography findings preceding. 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 common cause of death in patients with chronic refractory epilepsy, with incidence estimates per 1,000 patientyears varying from 0. So, our kneejerk reaction as neurologists trying to understand sudep has been to investigate various theories of.
Sudep is defined specifically as the sudden, unexpected, witnessed or unwitnessed, nontraumatic and nondrowning death in patients with epilepsy with or without evidence of a seizure, and excluding documented status epilepticus, in which. Poh and colleagues from the harvard mit division of health sciences and technology, and the division of epilepsy and clinical neurophysiology and department of neurosurgery from childrens hospital boston and department of neurology of epilepsy at brigham and womens. Sudden unexpected death in epilepsy sudep is the most frequent directly epilepsyrelated cause of premature death in people with epilepsy. A populationbased study of the incidence of sudep has never. Sudden death due to epilepsy sudep accounts for 10% of all epilepsy related deaths. Pdf on jan 1, 2011, rosemary panelli and others published sudden unexpected death in epilepsy. Sudep, or sudden unexpected death due to epilepsy affects many people with epilepsy whose seizures cannot be controlled. It accounts for 5% to 30% of all deaths in individuals with epilepsy and up to 50% in. Seizures and sudep are probabilistic events that cannot be accurately predicted. To determine the populationbased incidence of sudden unexplaine d death in epilepsy sudep and to determine the risk of sudep compared with the general population. Sudden unexpected death in epilepsy, or sudep, is one of the most common causes of death in people with epilepsy and originally brought to light by medical examiners. The goal of treatment should therefore be seizure freedom, using the lowest effective number and dosage of aeds.
It is associated with a 23 fold risk of premature mortality compared with the general population. Sudep action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths. Sudden unexpected death in epilepsy sudep is the major cause of epilepsy related. These strategies include seizure safety checklists, mobile phone technology, telehealth and various devices currently available or in development.
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