• Jennifer Thorpe, Samantha Ashby, Asma Hallab, Ding Ding, Maria Andraus, 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, Helen CrossJJUCL NIHR BRC Great Ormond Street Institute of Child Health, London, UK; Young Epilepsy, St Pier's Lane, Dormansland, Lingfield RH7 6P, UK., Josemir W Sander, Jane Hanna, Arjune Sen, and COVID-19 and Epilepsy (COV-E) Study Group.
• 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.
• Epilepsy Behav. 2021 Feb 1; 115: 107658.

AbstractThe COVID-19 pandemic has caused global anguish unparalleled in recent times. As cases rise, increased pressure on health services, combined with severe disruption to people's everyday lives, can adversely affect individuals living with chronic illnesses, including people with epilepsy. Stressors related to disruption to healthcare, finances, mental well-being, relationships, schooling, physical activity, and increased isolation could increase seizures and impair epilepsy self-management. We aim to understand the impact that COVID-19 has had on the health and well-being of people with epilepsy focusing on exposure to increased risk of seizures, associated comorbidity, and mortality. We designed two online surveys with one addressing people with epilepsy directly and the second for caregivers to report on behalf of a person with epilepsy. The survey is ongoing and has yielded 463 UK-based responses by the end of September 2020. Forty percent of respondents reported health changes during the pandemic (n = 185). Respondents cited a change in seizures (19%, n = 88), mental health difficulties (34%, n = 161), and sleep disruption (26%, n = 121) as the main reasons. Thirteen percent found it difficult to take medication on time. A third had difficulty accessing medical services (n = 154), with 8% having had an appointment canceled (n = 39). Only a small proportion reported having had discussions about epilepsy-related risks, such as safety precautions (16%, n = 74); mental health (29%, n = 134); sleep (30%, n = 140); and Sudden Unexpected Death in Epilepsy (SUDEP; 15%, n = 69) in the previous 12 months. These findings suggest that people with epilepsy are currently experiencing health changes, coupled with inadequate access to services. Also, there seems to be a history of poor risk communication in the months preceding the pandemic. As the UK witnesses a second COVID-19 wave, those involved in healthcare delivery must ensure optimal care is provided for people with chronic conditions, such as epilepsy, to ensure that avoidable morbidity and mortality is prevented during the pandemic, and beyond.Copyright © 2020 Elsevier Inc. All rights reserved.

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