Attitudes of Brazilian epileptologists to discussion about SUDEP with their patients: Truth may hurt, but does deceit hurt more?

Abstract

Epilepsy is a malignant condition that causes a higher rate of premature death in patients compared with the general population [ 1 Nashef L. Ryvlin P. Sudden unexpected death in epilepsy (SUDEP): update and reflections. Neurol Clin. 2009; 27: 1063-1074 Abstract Full Text Full Text PDF PubMed Scopus (93) Google Scholar , 2 Hesdorffer D.C. Tomson T. Benn E. Sander JW Nilsson L Langan Y et al. ILAE Commission on Epidemiology; Subcommission on Mortality. Combined analysis of risk factors for SUDEP. Epilepsia. 2011; 52: 1150-1159 Crossref PubMed Scopus (332) Google Scholar , 3 Nei M. Hays R. Sudden unexpected death in epilepsy. Curr Neurol Neurosci Rep. 2010; 10: 319-326 Crossref PubMed Scopus (74) Google Scholar ]. Sudden unexpected death in epilepsy (SUDEP) is a leading cause of mortality in people with epilepsy [ 1 Nashef L. Ryvlin P. Sudden unexpected death in epilepsy (SUDEP): update and reflections. Neurol Clin. 2009; 27: 1063-1074 Abstract Full Text Full Text PDF PubMed Scopus (93) Google Scholar , 2 Hesdorffer D.C. Tomson T. Benn E. Sander JW Nilsson L Langan Y et al. ILAE Commission on Epidemiology; Subcommission on Mortality. Combined analysis of risk factors for SUDEP. Epilepsia. 2011; 52: 1150-1159 Crossref PubMed Scopus (332) Google Scholar , 3 Nei M. Hays R. Sudden unexpected death in epilepsy. Curr Neurol Neurosci Rep. 2010; 10: 319-326 Crossref PubMed Scopus (74) Google Scholar ]. Sudden death in people with epilepsy is estimated to be at least 20 times higher than that in the general population, or more specifically, SUDEP is responsible for 7.5% to 17% of all deaths in people with epilepsy and has an incidence among adults between 1:500 and 1:1000 patient-years [ 4 Schuele S.U. Widdess-Walsh P. Bermeo A. Lüders H.O. Sudden unexplained death in epilepsy: the role of the heart. Cleve Clin J Med. 2007; 74: S121-S127 Crossref PubMed Scopus (90) Google Scholar , 5 Ficker D.M. So E.L. Shen W.K. Annegers JF O'Brien PC Cascino GD et al. Population-based study of the incidence of sudden unexplained death in epilepsy. Neurology. 1998; 51: 1270-1274 Crossref PubMed Scopus (388) Google Scholar ]. The main risk factors currently related to SUDEP include the presence or the number of generalized tonic–clonic seizures (GTCSs), nocturnal seizures, young age at epilepsy onset, longer duration of epilepsy, dementia, absence of cerebrovascular disease, asthma, male gender, symptomatic etiology of epilepsy, and alcohol abuse [ [6] Hesdorffer D.C. Tomson T. Sudden unexpected death in epilepsy: potential role of antiepileptic drugs. CNS Drugs. 2013; 27: 113-119 Crossref PubMed Scopus (75) Google Scholar ]. Suggested mechanisms predisposing to SUDEP have included autonomic dysregulation, i.e., respiratory and cardiovascular abnormalities during and after seizures [ 3 Nei M. Hays R. Sudden unexpected death in epilepsy. Curr Neurol Neurosci Rep. 2010; 10: 319-326 Crossref PubMed Scopus (74) Google Scholar , 6 Hesdorffer D.C. Tomson T. Sudden unexpected death in epilepsy: potential role of antiepileptic drugs. CNS Drugs. 2013; 27: 113-119 Crossref PubMed Scopus (75) Google Scholar , 7 Surges R. Thijs R.D. Tan H.L. Sander J.W. Sudden unexpected death in epilepsy: risk factors and potential pathomechanisms. Nat Rev Neurol. 2009; 5: 492-504 Crossref PubMed Scopus (334) Google Scholar , 8 Terra V.C. Cysneiros R. Cavalheiro E.A. Scorza F.A. Sudden unexpected death in epilepsy: from the lab to the clinic setting. Epilepsy Behav. 2013; 26: 415-420 Abstract Full Text Full Text PDF PubMed Scopus (40) Google Scholar , 9 Tomson T. Nashef L. Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. Lancet Neurol. 2008; 7: 1021-1031 Abstract Full Text Full Text PDF PubMed Scopus (513) Google Scholar ]. Regarding possible cardiac involvement in SUDEP, relevant putative mechanisms involved are cardiac arrhythmias, due to myocardial ischemia, electrolyte disturbances, arrhythmogenic drugs, or transmission of the epileptic activity via the autonomic nervous system to the heart [ 7 Surges R. Thijs R.D. Tan H.L. Sander J.W. Sudden unexpected death in epilepsy: risk factors and potential pathomechanisms. Nat Rev Neurol. 2009; 5: 492-504 Crossref PubMed Scopus (334) Google Scholar , 10 Stollberger C. Finsterer J. Cardiorespiratory findings in sudden unexplained/unexpected death in epilepsy (SUDEP). Epilepsy Res. 2004; 59: 51-60 Abstract Full Text Full Text PDF PubMed Scopus (187) Google Scholar , 11 Surges R. Taggart P. Sander J.W. Walker M.C. Too long or too short? New insights into abnormal cardiac repolarization in people with chronic epilepsy and its potential role in sudden unexpected death. Epilepsia. 2010; 51: 738-744 Crossref PubMed Scopus (112) Google Scholar , 12 Nei M. Ho R.T. Abou-Khalil B.W. Drislane FW Liporace J Romeo A et al. EEG and ECG in sudden unexplained death in epilepsy. Epilepsia. 2004; 45: 338-345 Crossref PubMed Scopus (187) Google Scholar ].