@article{2dc125ebef4244088081fa20f999ad45,
title = "Impact of the COVID-19 pandemic on people with epilepsy: Findings from the US arm of the COV-E study",
abstract = "Objectives: As part of the COVID-19 and Epilepsy (COV-E) global study, we aimed to understand the impact of COVID-19 on the medical care and well-being of people with epilepsy (PWE) in the United States, based on their perspectives and those of their caregivers. Methods: Separate surveys designed for PWE and their caregivers were circulated from April 2020 to July 2021; modifications in March 2021 included a question about COVID-19 vaccination status. Results: We received 788 responses, 71% from PWE (n = 559) and 29% (n = 229) from caregivers of persons with epilepsy. A third (n = 308) of respondents reported a change in their health or in the health of the person they care for. Twenty-seven percent (n = 210) reported issues related to worsening mental health. Of respondents taking ASMs (n = 769), 10% (n = 78) reported difficulty taking medications on time, mostly due to stress causing forgetfulness. Less than half of respondents received counseling on mental health and stress. Less than half of the PWE reported having discussions with their healthcare providers about sleep, ASMs, and potential side effects, while a larger proportion of caregivers (81%) reported having had discussions with their healthcare providers on the same topics. More PWE and caregivers reported that COVID-19-related measures caused adverse impact on their health in the post-vaccine period than during the pre-vaccine period, citing mental health issues as the primary reason. Significance: Our findings indicate that the impact of the COVID-19 pandemic in the US on PWE is multifaceted. Apart from the increased risk of poor COVID-19 outcomes, the pandemic has also had negative effects on mental health and self-management. Healthcare providers must be vigilant for increased emotional distress in PWE during the pandemic and consider the importance of effective counseling to diminish risks related to exacerbated treatment gaps.",
keywords = "COVID, chronic illness, coronavirus, epilepsy risk, mental health, seizures",
author = "{the COVID-19 Epilepsy COV-E Study Group} and Patricia Dugan and Elizabeth Carroll and Jennifer Thorpe and Nathalie Jette and Parul Agarwal and Samantha Ashby and Jane Hanna and Jacqueline French and Orrin Devinsky and Arjune Sen and Jennifer Thorpe and Samantha Ashby and Asma Hallab and Ding Ding and Maria Andraus and Patricia Dugan and Piero Perucca and Daniel Costello and French, {Jacqueline A.} and O{\textquoteright}Brien, {Terence J.} and Chantal Depondti and Andrade, {Danielle M.} and Robin Sengupta and Norman Delanty and Newton, {Charles R.} and Brodie, {Martin J.} and Orrin Devinsky and Cross, {J. Helen} and Sander, {Josemir W.} and Jane Hanna and Arjune Sen and Parul Agarwal",
note = "Funding Information: SUDEP Action funded this study Registered charity 1164250 (England & Wales) and supported by the Oxford NIHR Biomedical Research Centre. We are grateful to all of the following organizations and many people we cannot name individually for promoting this work through online platforms. We also very much appreciate the valuable input of all the respondents who have completed the surveys. BAND Foundation Dravet Syndrome UK Epilepsy Action Epilepsy Connections Epilepsy Foundation America Epilepsy Research UK Epilepsy Society Epilepsy Sparks IBE ILAE – British Branch Matthew's Friends Neurological Alliance SUDEP Action Funding Information: SUDEP Action funded this study Registered charity 1164250 (England & Wales) and supported by the Oxford NIHR Biomedical Research Centre. We are grateful to all of the following organizations and many people we cannot name individually for promoting this work through online platforms. We also very much appreciate the valuable input of all the respondents who have completed the surveys. BAND Foundation Dravet Syndrome UK Epilepsy Action Epilepsy Connections Epilepsy Foundation America Epilepsy Research UK Epilepsy Society Epilepsy Sparks IBE ILAE – British Branch Matthew's Friends Neurological Alliance SUDEP Action Funding Information: PP is supported by the National Health and Medical Research Council (APP1163708), the Epilepsy Foundation, the Royal Australasian College of Physicians, Melbourne Health, and Monash University. DMA is supported by EpLink, Dravet Syndrome Foundation, McLaughlin grants. NJ is the Bludhorn Professor of International Medicine and her institution receives grant funding from NINDS (NIH U24NS107201, NIH IU54NS100064) and the American Epilepsy Society/NORSE Institute for work she is involved in unrelated to this project. JHC is supported by the National Institute of Health Research (NIHR) Biomedical Research Centre at Great Ormond Street Hospital, NIHR, Engineering and Physical Sciences Research Council, GOSH Charity, Epilepsy Research UK, and the Waterloo Foundation. JWS is based at UCLH/UCL Comprehensive Biomedical Research Centre, which receives a proportion of funding from the UK Department of Health's NIHR Biomedical Research Centres funding scheme. He receives support from the Dr Marvin Weil Epilepsy Research Fund, the Christelijke Vereniging voor de verpleging van Lijders aan Epilepsie, The Netherlands, and the UK Epilepsy Society. AS is supported by the Oxford NIHR Biomedical Research Centre at the John Radcliffe Hospital, UK. All other authors report no conflicts of interest. Publisher Copyright: {\textcopyright} 2022 The Authors. Epilepsia Open published by Wiley Periodicals LLC on behalf of International League Against Epilepsy.",
year = "2022",
month = dec,
day = "1",
doi = "10.1002/epi4.12637",
language = "English",
volume = "7",
pages = "645--656",
journal = "Epilepsia Open",
issn = "2470-9239",
publisher = "Wiley-Blackwell Publishing Ltd",
number = "4",
}