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Report of the ILAE SUDEP Task Force on national recommendations and practices around the world regarding the use of wearable seizure detection devices: A global survey

Wearable seizure detection devices have the potential to address unmet needs of people with epilepsy. A recently published evidence‐based international guideline recommends using such devices for safety indications in patients with tonic–clonic seizures (TCS). Our objective was to map existing guide...

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Autores principales: Zelano, Johan, Beniczky, Sandor, Ryvlin, Philippe, Surges, Rainer, Tomson, Torbjörn
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10690692/
https://www.ncbi.nlm.nih.gov/pubmed/37567865
http://dx.doi.org/10.1002/epi4.12801
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author Zelano, Johan
Beniczky, Sandor
Ryvlin, Philippe
Surges, Rainer
Tomson, Torbjörn
author_facet Zelano, Johan
Beniczky, Sandor
Ryvlin, Philippe
Surges, Rainer
Tomson, Torbjörn
author_sort Zelano, Johan
collection PubMed
description Wearable seizure detection devices have the potential to address unmet needs of people with epilepsy. A recently published evidence‐based international guideline recommends using such devices for safety indications in patients with tonic–clonic seizures (TCS). Our objective was to map existing guidelines and clinical practices at national level. We conducted a survey of the International League Against Epilepsy (ILAE) chapters regarding national recommendations and practical circumstances for prescribing seizure detection devices, and another survey of physicians in the ILAE constituency anywhere in the world, concerning their views and practices regarding recommendations for and prescription of such devices. Fifty‐eight ILAE chapters (response rate 48%) and 157 physicians completed the surveys. More than two‐thirds of responding countries do not have standards on wearables for seizure detection, although they indicated availability of such devices. The most often recognized indications were safety and objective seizure quantification. In nearly half of countries, devices are purchased by patients or caregivers, and either lack a uniform reimbursement scheme (41%) or patients pay the full cost for the device (48%). Tonic–clonic seizure frequency, nocturnal seizures, and previous injuries were the main factors that influenced the surveyed physicians to recommend wearable seizure detection devices. Our results document the need to implement international clinical practice guidelines at national level and to consider these when deciding upon reimbursement of seizure detection devices.
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spelling pubmed-106906922023-12-02 Report of the ILAE SUDEP Task Force on national recommendations and practices around the world regarding the use of wearable seizure detection devices: A global survey Zelano, Johan Beniczky, Sandor Ryvlin, Philippe Surges, Rainer Tomson, Torbjörn Epilepsia Open Special Report Wearable seizure detection devices have the potential to address unmet needs of people with epilepsy. A recently published evidence‐based international guideline recommends using such devices for safety indications in patients with tonic–clonic seizures (TCS). Our objective was to map existing guidelines and clinical practices at national level. We conducted a survey of the International League Against Epilepsy (ILAE) chapters regarding national recommendations and practical circumstances for prescribing seizure detection devices, and another survey of physicians in the ILAE constituency anywhere in the world, concerning their views and practices regarding recommendations for and prescription of such devices. Fifty‐eight ILAE chapters (response rate 48%) and 157 physicians completed the surveys. More than two‐thirds of responding countries do not have standards on wearables for seizure detection, although they indicated availability of such devices. The most often recognized indications were safety and objective seizure quantification. In nearly half of countries, devices are purchased by patients or caregivers, and either lack a uniform reimbursement scheme (41%) or patients pay the full cost for the device (48%). Tonic–clonic seizure frequency, nocturnal seizures, and previous injuries were the main factors that influenced the surveyed physicians to recommend wearable seizure detection devices. Our results document the need to implement international clinical practice guidelines at national level and to consider these when deciding upon reimbursement of seizure detection devices. John Wiley and Sons Inc. 2023-08-22 /pmc/articles/PMC10690692/ /pubmed/37567865 http://dx.doi.org/10.1002/epi4.12801 Text en © 2023 The Authors. Epilepsia Open published by Wiley Periodicals LLC on behalf of International League Against Epilepsy. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
spellingShingle Special Report
Zelano, Johan
Beniczky, Sandor
Ryvlin, Philippe
Surges, Rainer
Tomson, Torbjörn
Report of the ILAE SUDEP Task Force on national recommendations and practices around the world regarding the use of wearable seizure detection devices: A global survey
title Report of the ILAE SUDEP Task Force on national recommendations and practices around the world regarding the use of wearable seizure detection devices: A global survey
title_full Report of the ILAE SUDEP Task Force on national recommendations and practices around the world regarding the use of wearable seizure detection devices: A global survey
title_fullStr Report of the ILAE SUDEP Task Force on national recommendations and practices around the world regarding the use of wearable seizure detection devices: A global survey
title_full_unstemmed Report of the ILAE SUDEP Task Force on national recommendations and practices around the world regarding the use of wearable seizure detection devices: A global survey
title_short Report of the ILAE SUDEP Task Force on national recommendations and practices around the world regarding the use of wearable seizure detection devices: A global survey
title_sort report of the ilae sudep task force on national recommendations and practices around the world regarding the use of wearable seizure detection devices: a global survey
topic Special Report
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10690692/
https://www.ncbi.nlm.nih.gov/pubmed/37567865
http://dx.doi.org/10.1002/epi4.12801
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