TY - JOUR
T1 - Counseling about sudden unexpected death in epilepsy (SUDEP)
T2 - A global survey of neurologists’ opinions
AU - Asadi-Pooya, Ali A.
AU - Trinka, Eugen
AU - Brigo, Francesco
AU - Hingray, Coraline
AU - Karakis, Ioannis
AU - Lattanzi, Simona
AU - Valente, Kette D.
AU - Contreras, Guilca
AU - Turuspekova, Saule T.
AU - Kishk, Nirmeen Adel
AU - Aljandeel, Ghaieb
AU - Farazdaghi, Mohsen
AU - Lopez, Yamile Calle
AU - Kissani, Najib
AU - Triki, Chahnez
AU - Krämer, Günter
AU - Surges, Rainer
AU - Mesraoua, Boulenouar
AU - Yu, Hsiang Yu
AU - Daza-Restrepo, Anilu
AU - Alsaadi, Taoufik
AU - Al-Asmi, Abdullah
AU - Kutlubaev, Mansur A.
AU - Pretorius, Chrisma
AU - Jusupova, Asel
AU - Khachatryan, Samson G.
AU - Ranganathan, Lakshmi Narasimhan
AU - Ashkanani, Abdulaziz
AU - Tomson, Torbjörn
AU - Gigineishvili, David
N1 - Publisher Copyright:
© 2022 Elsevier Inc.
PY - 2022/3/1
Y1 - 2022/3/1
N2 - 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.
AB - 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.
KW - Death
KW - Epilepsy
KW - Mortality
KW - SUDEP
KW - Seizure
KW - Attitude
KW - Humans
KW - Risk Factors
KW - Sudden Unexpected Death in Epilepsy
KW - Death, Sudden/epidemiology
KW - Counseling
KW - Surveys and Questionnaires
KW - Neurologists
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U2 - 10.1016/j.yebeh.2022.108570
DO - 10.1016/j.yebeh.2022.108570
M3 - Article
C2 - 35093831
AN - SCOPUS:85123628518
SN - 1525-5050
VL - 128
SP - 108570
JO - Epilepsy and Behavior
JF - Epilepsy and Behavior
M1 - 108570
ER -