Epilepsy care during the COVID-19 pandemic

J Helen Cross¹, Churl-Su Kwon², Ali Akbar Asadi-Pooya^{3

4}, Ganna Balagura⁵, Patricia Gómez-Iglesias⁶, Alla Guekht^{7

8}, Julie Hall⁹, Akio Ikeda¹⁰, Nirmeen A Kishk¹¹, Peter Murphy¹², Najib Kissani^{13

14}, Yahya Naji^{13

14}, Emilio Perucca^{15

16}, Juan Carlos Pérez-Poveda¹⁷, Emmanuel O Sanya^#¹⁸, Eugen Trinka^{19

20

21}, Dong Zhou²², Samuel Wiebe²³, Nathalie Jette²; ILAE Task Forces on COVID-19, Telemedicine

Affiliations

¹ Programme of Developmental Neurosciences, UCL NIHR BRC Great Ormond Street Institute of Child Health, Great Ormond Street Hospital for Children, London and Young Epilepsy Lingfield, London, UK.
² Division of Health Outcomes and Knowledge Translation Research, Department of Neurology, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
³ Epilepsy Research Center, Shiraz University of Medical Sciences, Shiraz, Iran.
⁴ Jefferson Comprehensive Epilepsy Center, Department of Neurology, Thomas Jefferson University, Philadelphia, USA.
⁵ Department of Neurosciences, Rehabilitation, Ophthalmology, Genetics, and Maternal and Child Health, Pediatric Neurology and Muscular Diseases Unit, IRCCS 'G. Gaslini' Institute, University of Genoa, Genoa, Italy.
⁶ Epilepsy Unit. Department of Neurology, Hospital Clínico San Carlos, Health Research Institute "San Carlos" (IdISCC), Universidad Complutense de Madrid, Madrid, Spain.
⁷ Moscow Research and Clinical Center for Neuropsychiatry, Moscow, Russia.
⁸ Department of Neurology, Neurosurgery and Medical Genetics, Russian National Research Medical University, Moscow, Russia.
⁹ Executive Director, International League Against Epilepsy, Flower Mound, TX, USA.
¹⁰ Department of Epilepsy, Movement Disorders and Physiology, Kyoto University Graduate School of Medicine, Kyoto, Japan.
¹¹ Neurology Department, Faculty of Medicine, Cairo University, Cairo, Egypt.
¹² Epilepsy Ireland, Dublin, Ireland.
¹³ Neuroscience Research Laboratory, Marrakech Medical School, University Cadi Ayyad, Marrakesh, Morocco.
¹⁴ Neurology Department, University Teaching Hospital Mohammed VI, Marrakesh, Morocco.
¹⁵ Division of Clinical and Experimental Pharmacology, Department of Internal Medicine and Therapeutics, University of Pavia, Pavia, Italy.
¹⁶ IRCCS Mondino Foundation (and member of the ERN EpiCARE), Pavia, Italy.
¹⁷ Neuroscience Department, Faculty of Medicine, Xavierian University, and Hospital Universitario San Ignacio, Bogotá D. C, Colombia.
¹⁸ Neurology division, Medicine Department, University of Ilorin Teaching Hospital, Kwara State, Nigeria.
¹⁹ Department of Neurology, Centre for Cognitive Neuroscience, Christian-Doppler University Hospital, Paracelsus Medical University, Salzburg, Austria.
²⁰ Neuroscience Institute Christian-Doppler University Hospital, Centre for Cognitive Neuroscience, Paracelsus Medical University, Salzburg, Austria.
²¹ Institute of Public Health, Medical Decision-Making and HTA, UMIT, Medical Informatics and Technology, Private University for Health Sciences, Hall in Tyrol, Austria.
²² Department of Neurology, West China Hospital, Sichuan University, Chengdu, China.
²³ Departments of Clinical Neurosciences and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Canada.

^# Contributed equally.

PMID: 34428314
PMCID: PMC8652685
DOI: 10.1111/epi.17045

Epilepsy care during the COVID-19 pandemic

J Helen Cross et al. Epilepsia. 2021 Oct.

. 2021 Oct;62(10):2322-2332.

doi: 10.1111/epi.17045. Epub 2021 Aug 24.

Authors

Affiliations

¹ Programme of Developmental Neurosciences, UCL NIHR BRC Great Ormond Street Institute of Child Health, Great Ormond Street Hospital for Children, London and Young Epilepsy Lingfield, London, UK.
² Division of Health Outcomes and Knowledge Translation Research, Department of Neurology, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
³ Epilepsy Research Center, Shiraz University of Medical Sciences, Shiraz, Iran.
⁴ Jefferson Comprehensive Epilepsy Center, Department of Neurology, Thomas Jefferson University, Philadelphia, USA.
⁵ Department of Neurosciences, Rehabilitation, Ophthalmology, Genetics, and Maternal and Child Health, Pediatric Neurology and Muscular Diseases Unit, IRCCS 'G. Gaslini' Institute, University of Genoa, Genoa, Italy.
⁶ Epilepsy Unit. Department of Neurology, Hospital Clínico San Carlos, Health Research Institute "San Carlos" (IdISCC), Universidad Complutense de Madrid, Madrid, Spain.
⁷ Moscow Research and Clinical Center for Neuropsychiatry, Moscow, Russia.
⁸ Department of Neurology, Neurosurgery and Medical Genetics, Russian National Research Medical University, Moscow, Russia.
⁹ Executive Director, International League Against Epilepsy, Flower Mound, TX, USA.
¹⁰ Department of Epilepsy, Movement Disorders and Physiology, Kyoto University Graduate School of Medicine, Kyoto, Japan.
¹¹ Neurology Department, Faculty of Medicine, Cairo University, Cairo, Egypt.
¹² Epilepsy Ireland, Dublin, Ireland.
¹³ Neuroscience Research Laboratory, Marrakech Medical School, University Cadi Ayyad, Marrakesh, Morocco.
¹⁴ Neurology Department, University Teaching Hospital Mohammed VI, Marrakesh, Morocco.
¹⁵ Division of Clinical and Experimental Pharmacology, Department of Internal Medicine and Therapeutics, University of Pavia, Pavia, Italy.
¹⁶ IRCCS Mondino Foundation (and member of the ERN EpiCARE), Pavia, Italy.
¹⁷ Neuroscience Department, Faculty of Medicine, Xavierian University, and Hospital Universitario San Ignacio, Bogotá D. C, Colombia.
¹⁸ Neurology division, Medicine Department, University of Ilorin Teaching Hospital, Kwara State, Nigeria.
¹⁹ Department of Neurology, Centre for Cognitive Neuroscience, Christian-Doppler University Hospital, Paracelsus Medical University, Salzburg, Austria.
²⁰ Neuroscience Institute Christian-Doppler University Hospital, Centre for Cognitive Neuroscience, Paracelsus Medical University, Salzburg, Austria.
²¹ Institute of Public Health, Medical Decision-Making and HTA, UMIT, Medical Informatics and Technology, Private University for Health Sciences, Hall in Tyrol, Austria.
²² Department of Neurology, West China Hospital, Sichuan University, Chengdu, China.
²³ Departments of Clinical Neurosciences and Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Canada.

^# Contributed equally.

PMID: 34428314
PMCID: PMC8652685
DOI: 10.1111/epi.17045

Abstract

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.

Keywords: COVID-19; people with epilepsy; psychological distress; telemedicine.

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References

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Epilepsy care during the COVID-19 pandemic

Affiliations

Epilepsy care during the COVID-19 pandemic

Authors

Affiliations

Abstract

References

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MeSH terms

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Full Text Sources

Medical

Research Materials