People with epilepsy are more likely to die prematurely, and the most common epilepsy-related category of death is sudden unexpected death in epilepsy (SUDEP). Thus, the purpose of this article was to alert the scientific community about SUDEP.Pessoas com epilepsia têm maior chance de morrer prematuramente e a principal causa de morte relacionada à epilepsia é a morte súbita em epilepsia (SUDEP). Assim, o objetivo deste artigo foi alertar a comunidade científica sobre a SUDEP.Universidade Federal de São Paulo (UNIFESP) Escola Paulista de Medicina Disciplina de Neurologia ExperimentalUNIFESP, EPM, Disciplina de Neurologia ExperimentalSciEL

Scorza, Fulvio Alexandre

Arquivos de Neuro-Psiquiatria

People with epilepsy are more likely to die prematurely, and the most common epilepsy-related category of death is sudden unexpected death in epilepsy (SUDEP). Thus, the purpose of this article was to alert the scientific community about SUDEP

Fulvio Alexandre Scorza

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Epilepsy kills

Scorza, Fulvio Alexandre [UNIFESP]

Repositório Institucional UNIFESP

226Views and ReViewsepilepsy killsEpilepsia mataFulvio Alexandre ScorzaEpilepsy is one of the most common serious brain disor-ders; it knows no age, racial, social class, geographic, or na-tional boundaries1. Often epilepsy is still seen as a benign con-dition in which individuals only have seizures. Unfortunately, the story is not as simple as it seems. Epilepsy is a malignant condition, which has a high rate of premature death com-pared to the general population2-4. Most of the excess death is due to the underlying disease causing epilepsy, and some is epilepsy-related, including trauma, suicide, aspiration pneu-monia, status epilepticus, but mostly due to sudden unex-pected death in epilepsy (SUDEP) that is a leading cause of mortality in epileptics2-4. The lack of findings in autopsy and the fact that most cases of SUDEP are not witnessed cause dif-ficulties with regard to the definitions of SUDEP. It is generally defined as a sudden, unexpected, witnessed or not witnessed, nontraumatic and non-drowning death in patients with epi-lepsy, with or without evidence of a seizure and excluding doc-umented status epilepticus, in which postmortem examination does not reveal a toxicological or anatomical cause of death5.The reported incidence of SUDEP is quite variable, and this is largely due to differences in patient populations, study design, and the criteria for defining SUDEP4. In fact, results from a US population-based study indicate that the risk of sudden death in people with epilepsy is estimated to be at least 20 times higher than the one of the general population6. In general terms, SUDEP is responsible for 7.5 to 17% of all deaths in people with epilepsy and it has an incidence among adults between 1:500 and 1:1,000 patient-years7. Concerning risk factors, several studies have tried for more than ten years to find factors predisposing to SUDEP in order to identify individuals with particularly high risks. To date, several risk factors have been identified such as refractoriness of the ep-ileptic condition, presence of convulsive seizures, early on-set of epilepsy, antiepileptic medication (polytherapy with antiepileptic drugs), young age, and duration of the seizure disorder4,8,9. The cause(s) of SUDEP is(are) still unknown, how-ever research consistently suggests that the main mechanism for SUDEP is autonomic deregulation, i.e., cardiac and respi-ratory abnormalities during and after seizures4,8-10. It is clear that SUDEP is mainly, yet not exclusively, a prob-lem for people with uncontrolled epilepsy9, but our under-standing of the best way to prevent it is still incomplete. Strict evidence for their effectiveness is still lacking, but epidemio-logical and observational data seem to suggest some measures to minimize the risk of SUDEP, including good seizure control, stress reduction, participation in physical activity and sports (with appropriate professional supervision), dietary manage-ment (omega-three supplementation), night supervision, fam-ily members’ knowledge of cardiopulmonary resuscitation techniques, and the basics of defibrillator use9,11,12.Despite the great scientific advances of SUDEP over the past two decades, the discussion of potential death related to seizures is still a topic under discussion between epileptolo-gists. Due to the high sensitivity of the issue, some clinicians Disciplina de Neurologia Experimental, Universidade Federal de São Paulo, Escola Paulista de Medicina, São Paulo SP, Brazil.Correspondence: Fulvio Alexandre Scorza; Disciplina de Neurologia Experimental; Rua Botucatu 862 / Edifício Leal Prado; 04023-900 São Paulo SP - Brasil; E-mail: scorza.nexp@epm.br Conflict of interest: There is no conflict of interest to declare.Received 18 October 2011; Received in final form 01 November 2011; Received in final form 08 November 2011abstRactPeople with epilepsy are more likely to die prematurely, and the most common epilepsy-related category of death is sudden unexpected death in epilepsy (SUDEP). Thus, the purpose of this article was to alert the scientific community about SUDEP.Key words: epilepsy, SUDEP, heart, seizures.ResumoPessoas com epilepsia têm maior chance de morrer prematuramente e a principal causa de morte relacionada à epilepsia é a morte súbita em epilepsia (SUDEP). Assim, o objetivo deste artigo foi alertar a comunidade científica sobre a SUDEP.Palavras-Chave: epilepsia, SUDEP, coração, crises epilépticas.227Fulvio Alexandre Scorza. Epilepsy killsbelieve that a policy of informing all patients will cause stress and anxiety13. Thus, two questions have generated more pas-sionate discussion than any other aspect of SUDEP: should all people diagnosed with epilepsy be told about the possibil-ity of SUDEP? Or should only those who are at higher risk be told?14,15. In general, it has been proposed that people should be fully informed about the risks of any condition or its treat-ment, although there is debate about the quality and timing of information on SUDEP to patients and relatives13. Following this line of reasoning, as neuroscientists in Latin America we do not have a formal opinion on this matter; therefore we enjoyed the presence of experts on this condition in the last Latin American Summer School on Epilepsy (LASSE) to start clarifying this issue in our region16. The main question was designed as a multiple choice meant to cover any position towards SUDEP counseling16: under which conditions would you tell a person with epilepsy the risks of SUDEP?a) I would never tell;b) I would tell only if the person approached the subject;c) I would tell to all people with epilepsy;d) I would tell to people with higher risk factors;e) I have never thought of this possibility.After careful analysis, some important conclusions and future prospects could be established: as SUDEP is not a rare event, caution remains prudent and necessary; patients with high risk factors for epilepsy should be told about SUDEP; a SUDEP practice guideline via the all Leagues of Epilepsy in Latin America should be developed; a SUDEP task force should be created in Latin America to disseminate consis-tent information regarding it for all health professionals; a research agenda in Latin America (experimental and clinical level) should be developed, and research agencies of the gov-ernments of each Latin American country should be encour-aged to release funds for this purpose; from these preliminary data, SUDEP will be deeply discussed in all subsequent edi-tions of LASSE16.People with refractory epilepsy may appear healthy during their lives, but they are more likely to die suddenly. Various mechanisms have been hypothesized or already proven to play a role in the etiology of SUDEP; however, more research is required to further elucidate its pathophysiology. Besides, if there is reason to suspect a patient’s risk, we are certain that a point of convergence between physicians ( fam-ily physician, cardiologist, and specialist center) is really im-portant, in order that together they can establish diagnosis, treatment options, risk determination, and counseling of the family members or caregivers.acKnowLedGmentsThe author acknowledges the many valuable sugges-tions made by Ley Sander, Professor of Neurology and Clinical Epilepsy, UCL Institute of Neurology, and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery, Queen Square, London, the United Kingdom.1. de Boer HM, Mula M, Sander JW. The global burden and stigma of epilepsy. Epilepsy Behav 2008;12:540-546.2. Nashef L, Ryvlin P. Sudden unexpected death in epilepsy (SUDEP): update and reflections. Neurol Clin 2009;27:1063-1074.3. Duncan JS, Sander JW, Sisodiya SM, Walker MC. Adult epilepsy. Lancet 2006;367:1087-1100.4. Nei M, Hays R. Sudden unexpected death in epilepsy. Curr Neurol Neurosci Rep 2010;10:319-326.5. Nashef L. Sudden unexpected death in epilepsy: terminology and definitions. Epilepsia 1997;38(Suppl):S6-S8. 6. Ficker DM, So EL, Shen WK, et al. Population-based study of the incidence of sudden unexplained death in epilepsy. Neurology 1998;51:1270-1274.7. Schuele SU, Widdess-Walsh P, Bermeo A, Lüders HO. Sudden unexplained death in epilepsy: the role of the heart. Cleve Clin J Med 2007;74(Suppl):S121-S127. 8. Surges R, Thijs RD, Tan HL, Sander JW. Sudden unexpected death in epilepsy: risk factors and potential pathomechanisms. Nat Rev Neurol 2009;5:492-504. 9. Tomson T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. Lancet Neurol 2008;7:1021-1031.10. Stollberger C, Finsterer J. Cardiorespiratory findings in sudden unexplained/unexpected death in epilepsy (SUDEP). Epilepsy Res 2004;59:51-60.11. Scorza FA, Colugnati DB, Pansani AP, Sonoda EY, Arida RM, Cavalheiro EA. Preventing tomorrow’s sudden cardiac death in epilepsy today: what should physicians know about this? Clinics 2008;63:389-394.12. Scorza FA, Arida RM, Terra VC, Cavalheiro EA. What can be done to reduce the risk of SUDEP? Epilepsy Behav 2010;18:137-138.13. Shorvon S, Tomson T. Sudden unexpected death in epilepsy. Lancet 2011. In press. doi:10.1016/S0140-6736(11)60176-1.14. Duncan S, Brodie MJ. Sudden unexpected death in epilepsy. Epilepsy Behav 2011;21:344-351.15. Brodie MJ, Holmes GL. Should all patients be told about sudden unexplained death in epilepsy (SUDEP?): pros and cons. Epilepsia 2008;49:99-101.16. Mendonça P, Arida RM, Cavalheiro EA, Scorza FA. Show and tell: revelations about SUDEP in Latin American Summer School on Epilepsy. Epilepsy Behav 2011. In press. doi:10.1016/j.yebeh.2011.09.025.References

Epilepsia mata

People with epilepsy are more likely to die prematurely, and the most common epilepsy-related category of death is sudden unexpected death in epilepsy (SUDEP). Thus, the purpose of this article was to alert the scientific community about SUDEP.</jats:p

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Pessoas com epilepsia têm maior chance de morrer prematuramente e a principal causa de morte relacionada à epilepsia é a morte súbita em epilepsia (SUDEP). Assim, o objetivo deste artigo foi alertar a comunidade científica sobre a SUDEP.People with epilepsy are more likely to die prematurely, and the most common epilepsy-related category of death is sudden unexpected death in epilepsy (SUDEP). Thus, the purpose of this article was to alert the scientific community about SUDEP.Universidade Federal de São Paulo (UNIFESP) Escola Paulista de Medicina Disciplina de Neurologia ExperimentalUNIFESP, EPM, Disciplina de Neurologia ExperimentalSciEL

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Epilepsia mata

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