Impact of the COVID-19 pandemic on people with epilepsy: Findings from the Brazilian arm of the COV-E study

Maria Andraus; Jennifer Thorpe; Xin You Tai; Samantha Ashby; Asma Hallab; Ding Ding; Patricia Dugan; Piero Perucca; Daniel Costello; Jacqueline A French; Terence J O'Brien; Chantal Depondt; Danielle M Andrade; Robin Sengupta; Norman Delanty; Nathalie Jette; Charles R Newton; Martin J Brodie; Orrin Devinsky; J Helen Cross; Li M Li; Carlos Silvado; Luis Moura; Harvey Cosenza; Jane P Messina; Jane Hanna; Josemir W Sander; Arjune Sen; COVID-19, Epilepsy COV-E Study Group

doi:10.1016/j.yebeh.2021.108261

Impact of the COVID-19 pandemic on people with epilepsy: Findings from the Brazilian arm of the COV-E study

Epilepsy Behav. 2021 Oct:123:108261. doi: 10.1016/j.yebeh.2021.108261. Epub 2021 Aug 9.

Authors

Maria Andraus¹, Jennifer Thorpe², Xin You Tai³, Samantha Ashby⁴, Asma Hallab⁵, Ding Ding⁶, Patricia Dugan⁷, Piero Perucca⁸, Daniel Costello⁹, Jacqueline A French⁷, Terence J O'Brien⁸, Chantal Depondt¹⁰, Danielle M Andrade¹¹, Robin Sengupta¹², Norman Delanty¹³, Nathalie Jette¹⁴, Charles R Newton¹⁵, Martin J Brodie¹⁶, Orrin Devinsky⁷, J Helen Cross¹⁷, Li M Li¹⁸, Carlos Silvado¹⁹, Luis Moura²⁰, Harvey Cosenza²¹, Jane P Messina²², Jane Hanna⁴, Josemir W Sander²³, Arjune Sen²⁴; COVID-19, Epilepsy COV-E Study Group

Affiliations

¹ Department of Internal Medicine, Faculty of Medicine, Neurology Service, Epilepsy Program, Clementino Fraga Filho University Hospital, Federal University of Rio de Janeiro, Rio de Janeiro, RJ, Brazil.
² Oxford Epilepsy Research Group, NIHR Biomedical Research Centre, Nuffield Department of Clinical Neurosciences, John Radcliffe Hospital, Oxford OX3 9DU, UK; SUDEP Action, 18 Newbury Street, Wantage, Oxfordshire OX12 8DA, UK.
³ Oxford Epilepsy Research Group, NIHR Biomedical Research Centre, Nuffield Department of Clinical Neurosciences, John Radcliffe Hospital, Oxford OX3 9DU, UK.
⁴ SUDEP Action, 18 Newbury Street, Wantage, Oxfordshire OX12 8DA, UK.
⁵ Charité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health. Department of Psychiatry and Psychotherapy, Campus Benjamin Franklin, Berlin, Germany.
⁶ Institute of Neurology, Fudan University Huashan Hospital, Shanghai, China.
⁷ Department of Neurology, NYU Grossman School of Medicine, USA.
⁸ Department of Neuroscience, Central Clinical School, The Alfred Hospital, Monash University, Melbourne, Australia & Departments of Medicine and Neurology, The Royal Melbourne Hospital, The University of Melbourne, Melbourne, Australia.
⁹ Epilepsy Service, Cork University Hospital & College of Medicine and Health, University College Cork, Ireland.
¹⁰ Department of Neurology, Hôpital Erasme - Université Libre de Bruxelles, Brussels, Belgium.
¹¹ Adult Epilepsy Genetics Program, Toronto Western Hospital, University of Toronto, Toronto, Canada.
¹² The Institute of Neurosciences, Kolkata, India.
¹³ Beaumont Hospital, and School of Pharmacy and Biomolecular Sciences, FutureNeuro Research Centre, Royal College of Surgeons in Ireland, Dublin, Ireland.
¹⁴ Department of Neurology, Icahn School of Medicine at Mount Sinai, New York, USA.
¹⁵ Oxford Epilepsy Research Group, NIHR Biomedical Research Centre, Nuffield Department of Clinical Neurosciences, John Radcliffe Hospital, Oxford OX3 9DU, UK; University Department of Psychiatry, University of Oxford, UK.
¹⁶ Epilepsy Unit, West Glasgow Ambulatory Care Hospital-Yorkhill, Glasgow, UK.
¹⁷ UCL NIHR BRC Great Ormond Street Institute of Child Health, London, UK; Young Epilepsy, St Pier's Lane, Dormansland, Lingfield RH7 6P, UK.
¹⁸ Brazilian Institute of Neuroscience and Neurotechnology, Department of Neurology of School of Medical Sciences, Unicamp, Campinas, SP, Brazil.
¹⁹ Comprehensive Epilepsy Program - EEG - Epilepsy Unit - Hospital de Clinicas, Federal University of Parana, Curitiba, PR, Brazil.
²⁰ Production Engineering Program, Fuzzy Logic Laboratory - Labfuzzy, Coordination of Post Graduate Engineering Programs - COPPE, Federal University of Rio de Janeiro, Rio de Janeiro, RJ, Brazil.
²¹ Production Engineering Program, Fuzzy Logic Laboratory - Labfuzzy, Coordination of Post Graduate Engineering Programs - COPPE, Federal University of Rio de Janeiro, Rio de Janeiro, RJ, Brazil; Department of Engineering - REG, Science and Technology Institute - ICT, Fluminense Federal University - UFF, Campus Rio das Ostras, RJ, Brazil.
²² School of Geography and the Environment, University of Oxford, UK; Oxford School of Global and Area Studies, University of Oxford, Oxford, UK.
²³ UCL Queen Square Institute of Neurology, Queen Square, London WC1N 3BG & Chalfont Centre for Epilepsy, Chalfont St Peter SL9 0RJ, UK; Stichting Epilepsie Instellingen Nederland (SEIN), Heemstede, Netherlands.
²⁴ Oxford Epilepsy Research Group, NIHR Biomedical Research Centre, Nuffield Department of Clinical Neurosciences, John Radcliffe Hospital, Oxford OX3 9DU, UK. Electronic address: arjune.sen@ndcn.ox.ac.uk.

Abstract

The COVID-19 pandemic has had an unprecedented impact on people and healthcare services. The disruption to chronic illnesses, such as epilepsy, may relate to several factors ranging from direct infection to secondary effects from healthcare reorganization and social distancing measures.

Objectives: As part of the COVID-19 and Epilepsy (COV-E) global study, we ascertained the effects of COVID-19 on people with epilepsy in Brazil, based on their perspectives and those of their caregivers. We also evaluated the impact of COVID-19 on the care delivered to people with epilepsy by healthcare workers.

Methods: We designed separate online surveys for people with epilepsy and their caregivers. A further survey for healthcare workers contained additional assessments of changes to working patterns, productivity, and concerns for those with epilepsy under their care. The Brazilian arm of COV-E initially collected data from May to November 2020 during the country's first wave. We also examined national data to identify the Brazilian states with the highest COVID-19 incidence and related mortality. Lastly, we applied this geographic grouping to our data to explore whether local disease burden played a direct role in difficulties faced by people with epilepsy.

Results: Two hundred and forty-one people returned the survey, 20% were individuals with epilepsy (n = 48); 22% were caregivers (n = 53), and 58% were healthcare workers (n = 140). Just under half (43%) of people with epilepsy reported health changes during the pandemic, including worsening seizure control, with specific issues related to stress and impaired mental health. Of respondents prescribed antiseizure medication, 11% reported difficulty taking medication on time due to problems acquiring prescriptions and delayed or canceled medical appointments. Only a small proportion of respondents reported discussing significant epilepsy-related risks in the previous 12 months. Analysis of national COVID-19 data showed a higher disease burden in the states of Sao Paulo and Rio de Janeiro compared to Brazil as a whole. There were, however, no geographic differences observed in survey responses despite variability in the incidence of COVID-19.

Conclusion: Our findings suggest that Brazilians with epilepsy have been adversely affected by COVID-19 by factors beyond infection or mortality. Mental health issues and the importance of optimal communication are critical during these difficult times. Healthcare services need to find nuanced approaches and learn from shared international experiences to provide optimal care for people with epilepsy as the direct burden of COVID-19 improves in some countries. In contrast, others face resurgent waves of the pandemic.

Keywords: Coronavirus; Epilepsy risk; Non-communicable disease; SUDEP; Seizures.

MeSH terms

Brazil / epidemiology
COVID-19*
Epilepsy* / epidemiology
Humans
Pandemics
SARS-CoV-2