Counseling about sudden unexpected death in epilepsy (SUDEP): A global survey of neurologists’ opinions

Asadi-Pooya A.A. Trinka E. Brigo F. Hingray C. Karakis I. Lattanzi S. Valente K.D. Contreras G. Turuspekova S.T. Kishk N.A. Aljandeel G. Farazdaghi M. Lopez Y.C. Kissani N. Triki C. Krämer G. Surges R. Mesraoua B. Yu H.-Y. Daza-Restrepo A. Alsaadi T. Al-Asmi A. Kutlubaev M.A. Pretorius C. Jusupova A. Khachatryan S.G. Ranganathan L.N. Ashkanani A. Tomson T. Gigineishvili D.
March 2022 Academic Press Inc.

Epilepsy and Behavior
2022 #128

Objective: To investigate the opinions and attitudes of neurologists on the counseling about sudden unexpected death in epilepsy (SUDEP) worldwide. Methods: Practicing neurologists from around the world were invited to participate in an online survey. On February 18th, 2021, we emailed an invitation including a questionnaire (using Google-forms) to the lead neurologists from 50 countries. The survey anonymously collected the demographic data of the participants and answers to the questions about their opinions and attitudes toward counseling about SUDEP. Results: In total, 1123 neurologists from 27 countries participated; 41.5% of the respondents reported they discuss the risk of SUDEP with patients and their care-givers only rarely. Specific subgroups of patients who should especially be told about this condition were considered to be those with poor antiseizure medication (ASM) adherence, frequent tonic-clonic seizures, or with drug-resistant epilepsy. The propensity to tell all patients with epilepsy (PWE) about SUDEP was higher among those with epilepsy fellowship. Having an epilepsy fellowship and working in an academic setting were factors associated with a comfortable discussion about SUDEP. There were significant differences between the world regions. Conclusion: Neurologists often do not discuss SUDEP with patients and their care-givers. While the results of this study may not be representative of practitioners in each country, it seems that there is a severe dissociation between the clinical significance of SUDEP and the amount of attention that is devoted to this matter in daily practice by many neurologists around the world.

Death , Epilepsy , Mortality , Seizure , SUDEP

Text of the article Перейти на текст статьи

Epilepsy Research Center, Shiraz University of Medical Sciences, Shiraz, Iran
Jefferson Comprehensive Epilepsy Center, Department of Neurology, Thomas Jefferson University, Philadelphia, PA, United States
Department of Neurology, Christian-Doppler Medical Centre, Paracelsus Medical University, 5020 Salzburg, Austria
Paracelsus Medical University, Salzburg, 5020, Austria
Centre for Cognitive Neuroscience, Salzburg, 5020, Austria
Associated Member of the European Referencenetwork EpiCARE, Neuroscience Institute, Christian-Doppler Medical Centre, Paracelsus Medical University, Salzburg, 5020, Austria
Department of Public Health, Health Services Research and Health Technology Assessment, UMIT – University for Health Sciences, Medical Informatics and Technology, Hall in Tirol, Austria
Karl Landsteiner Institute for Neurorehabilitation and Space Neurology, Salzburg, Austria
Department of Neurology, Hospital of Merano (SABES-ASDAA), Merano-Meran, Italy
Pôle universitaire adulte du Grand Nancy, CPN, Laxou, France
Department of Neurology, Emory University School of Medicine, Atlanta, GA, United States
Neurological Clinic, Department of Experimental and Clinical Medicine, Marche Polytechnic University, Ancona, Italy
Laboratory of Clinical Neurophysiology, Deparment of Psychiatry, Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo (HCFMUSP), São Paulo, Brazil
Epilepsy Unit. La Trinidad Medical Center, Caracas, Venezuela
Department of Nervous Diseases, Asfendiyarov Kazakh National Medical University, Almaty, Kazakhstan
Department of Neurology, Cairo University Epilepsy Unit (CUEU), School of Medicine, Cairo University, Cairo, Egypt
Iraqi Council for Medical Specializations, Faculty of Epileptology, Medical City, Baghdad, Iraq
Neurology Section, University of Antioquia, Fundación Clínica del Norte-Neuroclínica, Medellín, Colombia
Laboratory of Clinical and Experimental Neuroscience, Faculty of Medicine, Cadi Ayyad University, Marrakesh, Morocco
Department of Neurology, Teaching Hospital Mohammed VI, Marrakesh, Morocco
Child Neurology Department, Hedi Chaker University Hospital, LR19ES15, Sfax Medical School, Sfax University, Sfax, Tunisia
Neurocenter Bellevue, Zürich, Switzerland, and Epilepsy Center, University Hospital, Frankfurt, Germany
Department of Epileptology, University Hospital Bonn, Bonn, Germany
Neurosciences Department, Hamad Medical Corporation and Weill Cornell Medical College, Doha, Qatar
Department of Neurology, Neurological Institute, Taipei Veterans General Hospital, Taipei, Taiwan
School of Medicine, National Yang Ming Chiao Tung University College of Medicine, Taipei, Taiwan
Brain Research Center, National Yang Ming Chiao Tung University, Taipei, Taiwan
Epilepsy Center, EL Cruce-Dr Néstor Carlos Kirchner Hospital, ENyS-CONICET, Buenos Aires, Argentina
Deptartment of Neurology, American Center for Psychiatry and Neurology, Dubai, United Arab Emirates
Neurology Unit, Department of Medicine, College of Medicine and Health Sciences and Sultan Qaboos University Hospital, Sultan Qaboos University, Oman
Department of Neurology, Bashkir State Medical University, Ufa, Russian Federation
Department of Psychology, Stellenbosch University, Stellenbosch, South Africa
Kyrgyz State Medical Academy, Neurology and Clinical Genetics Department, Bishkek, Kyrgyzstan
Department of Neurology and Neurosurgery, National Institute of Health, Yerevan, Armenia
Institute of Neurology, Madras Medical College, Chennai, Tamil Nadu, India
Internal Medicine Team, New Ahmadi Hospital, Al-Ahmadi, Kuwait
Department of Clinical Neuroscience, Karolinska institutet, Stockholm, Sweden
Institute of Neurology, Javakhishvili Tbilisi State University, Department of Neurology & Neurosurgery, Tbilisi, Georgia

Epilepsy Research Center
Jefferson Comprehensive Epilepsy Center
Department of Neurology
Paracelsus Medical University
Centre for Cognitive Neuroscience
Associated Member of the European Referencenetwork EpiCARE
Department of Public Health
Karl Landsteiner Institute for Neurorehabilitation and Space Neurology
Department of Neurology
Pôle universitaire adulte du Grand Nancy
Department of Neurology
Neurological Clinic
Laboratory of Clinical Neurophysiology
Epilepsy Unit. La Trinidad Medical Center
Department of Nervous Diseases
Department of Neurology
Iraqi Council for Medical Specializations
Neurology Section
Laboratory of Clinical and Experimental Neuroscience
Department of Neurology
Child Neurology Department
Neurocenter Bellevue
Department of Epileptology
Neurosciences Department
Department of Neurology
School of Medicine
Brain Research Center
Epilepsy Center
Deptartment of Neurology
Neurology Unit
Department of Neurology
Department of Psychology
Kyrgyz State Medical Academy
Department of Neurology and Neurosurgery
Institute of Neurology
Internal Medicine Team
Department of Clinical Neuroscience
Institute of Neurology

10 лет помогаем публиковать статьи Международный издатель

Книга Публикация научной статьи Волощук 2026 Book Publication of a scientific article 2026