TY - JOUR
T1 - Epilepsy care during the COVID-19 pandemic
AU - ILAE Task Forces on COVID-19, Telemedicine
AU - Cross, J. Helen
AU - Kwon, Churl Su
AU - Asadi-Pooya, Ali Akbar
AU - Balagura, Ganna
AU - Gómez-Iglesias, Patricia
AU - Guekht, Alla
AU - Hall, Julie
AU - Ikeda, Akio
AU - Kishk, Nirmeen A.
AU - Murphy, Peter
AU - Kissani, Najib
AU - Naji, Yahya
AU - Perucca, Emilio
AU - Pérez-Poveda, Juan Carlos
AU - Sanya, Emmanuel O.
AU - Trinka, Eugen
AU - Zhou, Dong
AU - Wiebe, Samuel
AU - Jette, Nathalie
N1 - Funding Information:
The data reported in this article were collected as part of a project undertaken by the International League against Epilepsy (ILAE), and the authors are experts selected by the ILAE. Opinions expressed by the authors, however, do not necessarily represent the policies or positions of the ILAE. JHC has acted as an investigator for studies with GW Pharma, Zogenix, Vitaflo, and Marinius. She has been a speaker and on advisory boards for GW Pharma, Zogenix, and Nutricia; all remuneration has been paid to her department. Her research is supported by the National Institute of Health Research (NIHR) Biomedical Research Centre at Great Ormond Street Hospital. She holds an endowed chair at UCL Great Ormond Street Institute of Child Health; she holds grants from NIHR, Engineering and Physical Sciences Research Council, Great Ormond Street Hospital Charity, Epilepsy Research UK, and the Waterloo Foundation. CSK is a holder of a Leon Levy Fellowship. SW received unrestricted educational grants from UCB Pharma, Eisai, LivaNova, and Sunovion. AI as part of the Department of Epilepsy, Movement Disorders and Physiology as Industry‐Academia Collaboration Courses is supported by Eisai, Nihon Kohden, Otsuka, and UCB Japan Co., Ltd. AI reports honorariums from Eisai, Otsuka, and UCB Japan. AAAP, Honoraria from Cobel Daruo, RaymandRad and Tekaje; Royalty: Oxford University Press (Book publication). EP received speaker’s or consultancy fees from Angelini, Arvelle, Biogen, Corlieve, Eisai, GW Pharma, Sanofi, Sun Pharma, UCB Pharma, Xenon Pharma, and Zogenix. ET reports personal fees from EVER Pharma, Epilog, Marinus, Abbott, Argenix, Arvelle, Angelini, Medtronic, Bial – Portela & Cª, S.A., Hikma, Corlieve, Cobel Daruo, NewBridge, GL Pharma, GW Pharmaceuticals, GlaxoSmithKline, Boehringer Ingelheim, LivaNova, Eisai, UCB, Biogen, Genzyme Sanofi, and Actavis; his institution received grants from Biogen, UCB Pharma, Eisai, Red Bull, Merck, Bayer, the European Union, FWF Österreichischer Fond zur Wissenschaftsforderung, Bundesministerium für Wissenschaft und Forschung (FWF), and Jubiläumsfond der Österreichischen Nationalbank outside the submitted work. Royalty: Cambridge University Press and Springer. NJ is the Icahn School of Medicine Bludhorn Professor of International Medicine. She receives grant funding paid to her institution for grants unrelated to this work from National Institute of Neurological DIsorders and Stroke (National Institutes of Health [NIH] U24NS107201, NIH IU54NS100064). She also receives an honorarium for her work as an Associate Editor of . NV, GB, PGI, AG, JH, NK, PM, JCPP, ES, and DZ have no conflicts to declare. Epilepsia
Funding Information:
The data reported in this article were collected as part of a project undertaken by the International League against Epilepsy (ILAE), and the authors are experts selected by the ILAE. Opinions expressed by the authors, however, do not necessarily represent the policies or positions of the ILAE. JHC has acted as an investigator for studies with GW Pharma, Zogenix, Vitaflo, and Marinius. She has been a speaker and on advisory boards for GW Pharma, Zogenix, and Nutricia; all remuneration has been paid to her department. Her research is supported by the National Institute of Health Research (NIHR) Biomedical Research Centre at Great Ormond Street Hospital. She holds an endowed chair at UCL Great Ormond Street Institute of Child Health; she holds grants from NIHR, Engineering and Physical Sciences Research Council, Great Ormond Street Hospital Charity, Epilepsy Research UK, and the Waterloo Foundation. CSK is a holder of a Leon Levy Fellowship. SW received unrestricted educational grants from UCB Pharma, Eisai, LivaNova, and Sunovion. AI as part of the Department of Epilepsy, Movement Disorders and Physiology as Industry-Academia Collaboration Courses is supported by Eisai, Nihon Kohden, Otsuka, and UCB Japan Co., Ltd. AI reports honorariums from Eisai, Otsuka, and UCB Japan. AAAP, Honoraria from Cobel Daruo, RaymandRad and Tekaje; Royalty: Oxford University Press (Book publication). EP received speaker’s or consultancy fees from Angelini, Arvelle, Biogen, Corlieve, Eisai, GW Pharma, Sanofi, Sun Pharma, UCB Pharma, Xenon Pharma, and Zogenix. ET reports personal fees from EVER Pharma, Epilog, Marinus, Abbott, Argenix, Arvelle, Angelini, Medtronic, Bial – Portela & Cª, S.A., Hikma, Corlieve, Cobel Daruo, NewBridge, GL Pharma, GW Pharmaceuticals, GlaxoSmithKline, Boehringer Ingelheim, LivaNova, Eisai, UCB, Biogen, Genzyme Sanofi, and Actavis; his institution received grants from Biogen, UCB Pharma, Eisai, Red Bull, Merck, Bayer, the European Union, FWF Österreichischer Fond zur Wissenschaftsforderung, Bundesministerium für Wissenschaft und Forschung (FWF), and Jubiläumsfond der Österreichischen Nationalbank outside the submitted work. Royalty: Cambridge University Press and Springer. NJ is the Icahn School of Medicine Bludhorn Professor of International Medicine. She receives grant funding paid to her institution for grants unrelated to this work from National Institute of Neurological DIsorders and Stroke (National Institutes of Health [NIH] U24NS107201, NIH IU54NS100064). She also receives an honorarium for her work as an Associate Editor of Epilepsia. NV, GB, PGI, AG, JH, NK, PM, JCPP, ES, and DZ have no conflicts to declare.
Publisher Copyright:
© 2021 International League Against Epilepsy
PY - 2021/10
Y1 - 2021/10
N2 - The coronavirus disease 2019 (COVID-19) pandemic has affected the care of all patients around the world. The International League Against Epilepsy (ILAE) COVID-19 and Telemedicine Task Forces examined, through surveys to people with epilepsy (PWE), caregivers, and health care professionals, how the pandemic has affected the well-being, care, and services for PWE. The ILAE included a link on their website whereby PWE and/or their caregivers could fill out a survey (in 11 languages) about the impact of the COVID-19 pandemic, including access to health services and impact on mental health, including the 6-item Kessler Psychological Distress Scale. An anonymous link was also provided whereby health care providers could report cases of new-onset seizures or an exacerbation of seizures in the context of COVID-19. Finally, a separate questionnaire aimed at exploring the utilization of telehealth by health care professionals since the pandemic began was available on the ILAE website and also disseminated to its members. Seventeen case reports were received; data were limited and therefore no firm conclusions could be drawn. Of 590 respondents to the well-being survey (422 PWE, 166 caregivers), 22.8% PWE and 27.5% caregivers reported an increase in seizure frequency, with difficulty in accessing medication and health care professionals reported as barriers to care. Of all respondents, 57.1% PWE and 21.5% caregivers had severe psychological distress (k score >13), which was significantly higher among PWE than caregivers (p<0.01). An increase in telemedicine use during the COVID-19 pandemic was reported by health care professionals, with 40% of consultations conducted by this method. Although 74.9% of health care providers thought that this impacted positively, barriers to care were also identified. As we move forward, there is a need to ensure ongoing support and care for PWE to prevent a parallel pandemic of unmet health care needs.
AB - The coronavirus disease 2019 (COVID-19) pandemic has affected the care of all patients around the world. The International League Against Epilepsy (ILAE) COVID-19 and Telemedicine Task Forces examined, through surveys to people with epilepsy (PWE), caregivers, and health care professionals, how the pandemic has affected the well-being, care, and services for PWE. The ILAE included a link on their website whereby PWE and/or their caregivers could fill out a survey (in 11 languages) about the impact of the COVID-19 pandemic, including access to health services and impact on mental health, including the 6-item Kessler Psychological Distress Scale. An anonymous link was also provided whereby health care providers could report cases of new-onset seizures or an exacerbation of seizures in the context of COVID-19. Finally, a separate questionnaire aimed at exploring the utilization of telehealth by health care professionals since the pandemic began was available on the ILAE website and also disseminated to its members. Seventeen case reports were received; data were limited and therefore no firm conclusions could be drawn. Of 590 respondents to the well-being survey (422 PWE, 166 caregivers), 22.8% PWE and 27.5% caregivers reported an increase in seizure frequency, with difficulty in accessing medication and health care professionals reported as barriers to care. Of all respondents, 57.1% PWE and 21.5% caregivers had severe psychological distress (k score >13), which was significantly higher among PWE than caregivers (p<0.01). An increase in telemedicine use during the COVID-19 pandemic was reported by health care professionals, with 40% of consultations conducted by this method. Although 74.9% of health care providers thought that this impacted positively, barriers to care were also identified. As we move forward, there is a need to ensure ongoing support and care for PWE to prevent a parallel pandemic of unmet health care needs.
KW - COVID-19
KW - people with epilepsy
KW - psychological distress
KW - telemedicine
UR - http://www.scopus.com/inward/record.url?scp=85113655126&partnerID=8YFLogxK
U2 - 10.1111/epi.17045
DO - 10.1111/epi.17045
M3 - Article
C2 - 34428314
AN - SCOPUS:85113655126
SN - 0013-9580
VL - 62
SP - 2322
EP - 2332
JO - Epilepsia
JF - Epilepsia
IS - 10
ER -