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

Ali A. Asadi-Pooya; Eugen Trinka; Francesco Brigo; Coraline Hingray; Ioannis Karakis; Simona Lattanzi; Kette D. Valente; Guilca Contreras; Saule T. Turuspekova; Nirmeen Adel Kishk; Ghaieb Aljandeel; Mohsen Farazdaghi; Yamile Calle Lopez; Najib Kissani; Chahnez Triki; Günter Krämer; Rainer Surges; Boulenouar Mesraoua; Hsiang-Yu Yu; Anilu Daza-Restrepo; Taoufik Alsaadi; Abdullah Al-Asmi; Mansur A. Kutlubaev; Chrisma Pretorius; Asel Jusupova; Samson G. Khachatryanz; Lakshmi Narasimhan Ranganathan; Abdulaziz Ashkanani; Torbjörn Tomson; David Gigineishvili

doi:10.1016/j.yebeh.2022.108570

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

Ali A. Asadi-Pooya^*, Eugen Trinka, Francesco Brigo, Coraline Hingray^*, Ioannis Karakis^*, Simona Lattanzi, Kette D. Valente, Guilca Contreras, Saule T. Turuspekova, Nirmeen Adel Kishk^*, Ghaieb Aljandeel, Mohsen Farazdaghi, Yamile Calle Lopez, Najib Kissani, Chahnez Triki, Günter Krämer^*, Rainer Surges^*, Boulenouar Mesraoua^*, Hsiang-Yu Yu, Anilu Daza-RestrepoTaoufik Alsaadi^*, Abdullah Al-Asmi^*, Mansur A. Kutlubaev, Chrisma Pretorius^*, Asel Jusupova, Samson G. Khachatryanz, Lakshmi Narasimhan Ranganathan, Abdulaziz Ashkanani, Torbjörn Tomson^*, David Gigineishvili^*

^*Corresponding author for this work

Centre for Cognitive Neuroscience

Research output: Contribution to journal › Article › peer-review

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.

Original language	English
Article number	108570
Number of pages	7
Journal	Epilepsy and Behavior
Volume	128
DOIs	https://doi.org/10.1016/j.yebeh.2022.108570
Publication status	Published - Mar 2022

Keywords

Epilepsy
Death
Mortality
Seizure
SUDEP

Fields of Science and Technology Classification 2012

305 Other Human Medicine, Health Sciences

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10.1016/j.yebeh.2022.108570

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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., ... Gigineishvili, D. (2022). Counseling about sudden unexpected death in epilepsy (SUDEP): A global survey of neurologists’ opinions. Epilepsy and Behavior, 128, [108570]. https://doi.org/10.1016/j.yebeh.2022.108570

Asadi-Pooya, Ali A. ; Trinka, Eugen ; Brigo, Francesco ; Hingray, Coraline ; Karakis, Ioannis ; Lattanzi, Simona ; Valente, Kette D. ; Contreras, Guilca ; Turuspekova, Saule T. ; Kishk, Nirmeen Adel ; Aljandeel, Ghaieb ; Farazdaghi, Mohsen ; Lopez, Yamile Calle ; Kissani, Najib ; Triki, Chahnez ; Krämer, Günter ; Surges, Rainer ; Mesraoua, Boulenouar ; Yu, Hsiang-Yu ; Daza-Restrepo, Anilu ; Alsaadi, Taoufik ; Al-Asmi, Abdullah ; Kutlubaev, Mansur A. ; Pretorius, Chrisma ; Jusupova, Asel ; Khachatryanz, Samson G. ; Ranganathan, Lakshmi Narasimhan ; Ashkanani, Abdulaziz ; Tomson, Torbjörn ; Gigineishvili, David. / Counseling about sudden unexpected death in epilepsy (SUDEP) : A global survey of neurologists’ opinions. In: Epilepsy and Behavior. 2022 ; Vol. 128.

@article{1fab22452ee540a5aef50d4dfaf63549,

title = "Counseling about sudden unexpected death in epilepsy (SUDEP): A global survey of neurologists{\textquoteright} opinions",

abstract = "ObjectiveTo investigate the opinions and attitudes of neurologists on the counseling about sudden unexpected death in epilepsy (SUDEP) worldwide.MethodsPracticing 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.ResultsIn 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.ConclusionNeurologists 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 = "Epilepsy, Death, Mortality, Seizure, SUDEP",

author = "Asadi-Pooya, {Ali A.} and Eugen Trinka and Francesco Brigo and Coraline Hingray and Ioannis Karakis and Simona Lattanzi and Valente, {Kette D.} and Guilca Contreras and Turuspekova, {Saule T.} and Kishk, {Nirmeen Adel} and Ghaieb Aljandeel and Mohsen Farazdaghi and Lopez, {Yamile Calle} and Najib Kissani and Chahnez Triki and G{\"u}nter Kr{\"a}mer and Rainer Surges and Boulenouar Mesraoua and Hsiang-Yu Yu and Anilu Daza-Restrepo and Taoufik Alsaadi and Abdullah Al-Asmi and Kutlubaev, {Mansur A.} and Chrisma Pretorius and Asel Jusupova and Khachatryanz, {Samson G.} and Ranganathan, {Lakshmi Narasimhan} and Abdulaziz Ashkanani and Torbj{\"o}rn Tomson and David Gigineishvili",

year = "2022",

month = mar,

doi = "10.1016/j.yebeh.2022.108570",

language = "English",

volume = "128",

journal = "Epilepsy and Behavior",

issn = "1525-5050",

publisher = "Elsevier Inc.",

}

Asadi-Pooya, AA, Trinka, E, Brigo, F, Hingray, C, Karakis, I, Lattanzi, S, Valente, KD, Contreras, G, Turuspekova, ST, Kishk, NA, Aljandeel, G, Farazdaghi, M, Lopez, YC, Kissani, N, Triki, C, Krämer, G, Surges, R, Mesraoua, B, Yu, H-Y, Daza-Restrepo, A, Alsaadi, T, Al-Asmi, A, Kutlubaev, MA, Pretorius, C, Jusupova, A, Khachatryanz, SG, Ranganathan, LN, Ashkanani, A, Tomson, T & Gigineishvili, D 2022, 'Counseling about sudden unexpected death in epilepsy (SUDEP): A global survey of neurologists’ opinions', Epilepsy and Behavior, vol. 128, 108570. https://doi.org/10.1016/j.yebeh.2022.108570

Counseling about sudden unexpected death in epilepsy (SUDEP) : A global survey of neurologists’ opinions. / Asadi-Pooya, Ali A.; Trinka, Eugen; Brigo, Francesco; Hingray, Coraline; Karakis, Ioannis; Lattanzi, Simona; Valente, Kette D.; Contreras, Guilca; Turuspekova, Saule T.; Kishk, Nirmeen Adel; Aljandeel, Ghaieb; Farazdaghi, Mohsen; Lopez, Yamile Calle; Kissani, Najib; Triki, Chahnez; Krämer, Günter; Surges, Rainer; Mesraoua, Boulenouar; Yu, Hsiang-Yu; Daza-Restrepo, Anilu; Alsaadi, Taoufik; Al-Asmi, Abdullah; Kutlubaev, Mansur A.; Pretorius, Chrisma; Jusupova, Asel; Khachatryanz, Samson G.; Ranganathan, Lakshmi Narasimhan; Ashkanani, Abdulaziz; Tomson, Torbjörn; Gigineishvili, David.

In: Epilepsy and Behavior, Vol. 128, 108570, 03.2022.

Research output: Contribution to journal › Article › peer-review

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 - Khachatryanz, Samson G.

AU - Ranganathan, Lakshmi Narasimhan

AU - Ashkanani, Abdulaziz

AU - Tomson, Torbjörn

AU - Gigineishvili, David

PY - 2022/3

Y1 - 2022/3

N2 - ObjectiveTo investigate the opinions and attitudes of neurologists on the counseling about sudden unexpected death in epilepsy (SUDEP) worldwide.MethodsPracticing 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.ResultsIn 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.ConclusionNeurologists 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 - ObjectiveTo investigate the opinions and attitudes of neurologists on the counseling about sudden unexpected death in epilepsy (SUDEP) worldwide.MethodsPracticing 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.ResultsIn 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.ConclusionNeurologists 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 - Epilepsy

KW - Death

KW - Mortality

KW - Seizure

KW - SUDEP

UR - http://www.scopus.com/inward/record.url?scp=85123628518&partnerID=8YFLogxK

UR - https://pubmed.ncbi.nlm.nih.gov/35093831/

UR - https://www.mendeley.com/catalogue/ca131a7a-d5ce-3a5e-a9e5-13f1ddbc6c2c/

U2 - 10.1016/j.yebeh.2022.108570

DO - 10.1016/j.yebeh.2022.108570

M3 - Article

C2 - 35093831

VL - 128

JO - Epilepsy and Behavior

JF - Epilepsy and Behavior

SN - 1525-5050

M1 - 108570

ER -

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

Abstract

Keywords

Fields of Science and Technology Classification 2012

Access to Document

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