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

Research output: Contribution to journalArticlepeer-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 languageEnglish
Article number108570
Number of pages7
JournalEpilepsy and Behavior
Volume128
DOIs
Publication statusPublished - 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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