Counseling about sudden unexpected death in epilepsy (SUDEP): A global survey of neurologists' opinions
Ali A Asadi-Pooya 1, Eugen Trinka 2, Francesco Brigo 3, Coraline Hingray 4, Ioannis Karakis 5, Simona Lattanzi 6, Kette D Valente 7, Guilca Contreras 8, Saule T Turuspekova 9, Nirmeen Adel Kishk 10, Ghaieb Aljandeel 11, Mohsen Farazdaghi 12, Yamile Calle Lopez 13, Najib Kissani 14, Chahnez Triki 15, Günter Krämer 16, Rainer Surges 17, Boulenouar Mesraoua 18, Hsiang-Yu Yu 19, Anilu Daza-Restrepo 20, Taoufik Alsaadi 21, Abdullah Al-Asmi 22, Mansur A Kutlubaev 23, Chrisma Pretorius 24, Asel Jusupova 25, Samson G Khachatryan 26, Lakshmi Narasimhan Ranganathan 27, Abdulaziz Ashkanani 28, Torbjörn Tomson 29, David Gigineishvili 30
Affiliations
Affiliations
- 1Epilepsy Research Center, Shiraz University of Medical Sciences, Shiraz, Iran; Jefferson Comprehensive Epilepsy Center, Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA. Electronic address: aliasadipooya@yahoo.com.
- 2Department of Neurology, Christian-Doppler Medical Centre, Paracelsus Medical University, 5020 Salzburg, Austria; Paracelsus Medical University, 5020 Salzburg, Austria; Centre for Cognitive Neuroscience, 5020 Salzburg, Austria; Associated Member of the European Referencenetwork EpiCARE, Neuroscience Institute, Christian-Doppler Medical Centre, Paracelsus Medical University, 5020 Salzburg, Austria; Paracelsus Medical University, 5020 Salzburg, 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.
- 3Department of Neurology, Hospital of Merano (SABES-ASDAA), Merano-Meran, Italy.
- 4Pôle universitaire adulte du Grand Nancy, CPN, Laxou, France. Electronic address: c.hingray@chru-nancy.fr.
- 5Department of Neurology, Emory University School of Medicine, Atlanta, GA, USA. Electronic address: ioannis.karakis@emory.edu.
- 6Neurological Clinic, Department of Experimental and Clinical Medicine, Marche Polytechnic University, Ancona, Italy.
- 7Laboratory of Clinical Neurophysiology, Deparment of Psychiatry, Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo (HCFMUSP), São Paulo, Brazil.
- 8Epilepsy Unit. La Trinidad Medical Center, Caracas, Venezuela.
- 9Department of Nervous Diseases, Asfendiyarov Kazakh National Medical University, Almaty, Kazakhstan.
- 10Department of Neurology, Cairo University Epilepsy Unit (CUEU), School of Medicine, Cairo University, Cairo, Egypt. Electronic address: nirmeenkishk@kasralainy.edu.eg.
- 11Iraqi Council for Medical Specializations, Faculty of Epileptology, Medical City, Baghdad, Iraq.
- 12Epilepsy Research Center, Shiraz University of Medical Sciences, Shiraz, Iran.
- 13Neurology Section, University of Antioquia, Fundación Clínica del Norte-Neuroclínica, Medellín, Colombia.
- 14Laboratory of Clinical and Experimental Neuroscience, Faculty of Medicine, Cadi Ayyad University, Marrakesh, Morocco; Department of Neurology, Teaching Hospital Mohammed VI, Marrakesh, Morocco.
- 15Child Neurology Department, Hedi Chaker University Hospital, LR19ES15, Sfax Medical School, Sfax University, Sfax, Tunisia.
- 16Neurocenter Bellevue, Zürich, Switzerland, and Epilepsy Center, University Hospital, Frankfurt, Germany. Electronic address: g.kraemer@epilepsie-med.de.
- 17Department of Epileptology, University Hospital Bonn, Bonn, Germany. Electronic address: rainer.surges@ukbonn.de.
- 18Neurosciences Department, Hamad Medical Corporation and Weill Cornell Medical College, Doha, Qatar. Electronic address: boulenouar.mesraoua@wanadoo.fr.
- 19Department 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.
- 20Epilepsy Center, EL Cruce-Dr Néstor Carlos Kirchner Hospital, ENyS-CONICET, Buenos Aires, Argentina.
- 21Deptartment of Neurology, American Center for Psychiatry and Neurology, Dubai, United Arab Emirates. Electronic address: t.alsaadi@americancenteruae.com.
- 22Neurology Unit, Department of Medicine, College of Medicine and Health Sciences and Sultan Qaboos University Hospital, Sultan Qaboos University, Oman. Electronic address: alasm@squ.edu.om.
- 23Department of Neurology, Bashkir State Medical University, Ufa, Russia.
- 24Department of Psychology, Stellenbosch University, Stellenbosch, South Africa. Electronic address: chrismapretorius@sun.ac.za.
- 25Kyrgyz State Medical Academy, Neurology and Clinical Genetics Department, Bishkek, Kyrgyzstan.
- 26Department of Neurology and Neurosurgery, National Institute of Health, Yerevan, Armenia.
- 27Institute of Neurology, Madras Medical College, Chennai, Tamil Nadu, India.
- 28Internal Medicine Team, New Ahmadi Hospital, Al-Ahmadi, Kuwait.
- 29Department of Clinical Neuroscience, Karolinska institutet, Stockholm, Sweden. Electronic address: torbjorn.tomson@sll.se.
- 30Institute of Neurology, Javakhishvili Tbilisi State University, Department of Neurology & Neurosurgery, Tbilisi, Georgia. Electronic address: david.gigineishvili@tsu.ge.
Abstract
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.
Keywords: Death; Epilepsy; Mortality; SUDEP; Seizure.
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