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Publication Details
AFRICAN RESEARCH NEXUS
SHINING A SPOTLIGHT ON AFRICAN RESEARCH
Impact of the COVID-19 pandemic on people with epilepsy: Findings from the US arm of the COV-E study
Epilepsia Open, Volume 7, No. 4, Year 2022
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Description
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. © 2022 The Authors. Epilepsia Open published by Wiley Periodicals LLC on behalf of International League Against Epilepsy.
Authors & Co-Authors
Jetté, Nathalie J.
United States, New York
Icahn School of Medicine at Mount Sinai
French, Jacqueline A.
United States, New York
Nyu Grossman School of Medicine
Devinsky, Orrin In
United States, New York
Nyu Grossman School of Medicine
Sen, Arjune
United Kingdom, Oxford
University of Oxford Medical Sciences Division
Hallab, Asma
Unknown Affiliation
Ding, Ding
Unknown Affiliation
Perucca, Piero
Unknown Affiliation
Costello, Daniel J.
Unknown Affiliation
O'Brien, Terence J.
Unknown Affiliation
Andrade, Danielle M.
Unknown Affiliation
Delanty, Norman
Unknown Affiliation
Newton, Charles R.J.C.
Unknown Affiliation
Brodie, Martin J.
Unknown Affiliation
Sander, Josemir W.
Unknown Affiliation
Statistics
Citations: 5
Authors: 14
Affiliations: 3
Identifiers
Doi:
10.1002/epi4.12637
ISSN:
24709239
Research Areas
Covid
Health System And Policy
Mental Health
Study Design
Cross Sectional Study