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Title: Learning From the Experiences of COVID-19 Survivors: Web-Based Survey Study
Background There are still many unanswered questions about the novel coronavirus; however, a largely underutilized source of knowledge is the millions of people who have recovered after contracting the virus. This includes a majority of undocumented cases of COVID-19, which were classified as mild or moderate and received little to no clinical care during the course of illness. Objective This study aims to document and glean insights from the experiences of individuals with a first-hand experience in dealing with COVID-19, especially the so-called mild-to-moderate cases that self-resolved while in isolation. Methods This web-based survey study called C19 Insider Scoop recruited adult participants aged 18 years or older who reside in the United States and had tested positive for COVID-19 or antibodies. Participants were recruited through various methods, including online support groups for COVID-19 survivors, advertisement in local news outlets, as well as through professional and other networks. The main outcomes measured in this study included knowledge of contraction or transmission of the virus, symptoms, and personal experiences on the road to recovery. Results A total of 72 participants (female, n=53; male, n=19; age range: 18-73 years; mean age: 41 [SD 14] years) from 22 US states were enrolled in this study. The top known source of how people contracted SARS-CoV-2, the virus known to cause COVID-19, was through a family or household member (26/72, 35%). This was followed by essential workers contracting the virus through the workplace (13/72, 18%). Participants reported up to 27 less-documented symptoms that they experienced during their illness, such as brain or memory fog, palpitations, ear pain or discomfort, and neurological problems. In addition, 47 of 72 (65%) participants reported that their symptoms lasted longer than the commonly cited 2-week period even for mild cases of COVID-19. The mean recovery time of the study participants was 4.5 weeks, and exactly one-half of participants (50%) still experienced lingering symptoms of COVID-19 after an average of 65 days following illness onset. Additionally, 37 (51%) participants reported that they experienced stigma associated with contracting COVID-19. Conclusions This study presents preliminary findings suggesting that emphasis on family or household spread of COVID-19 may be lacking and that there is a general underestimation of the recovery time even for mild cases of illness with the virus. Although a larger study is needed to validate these results, it is important to note that as more people experience COVID-19, insights from COVID-19 survivors can enable a more informed public, pave the way for others who may be affected by the virus, and guide further research.  more » « less
Award ID(s):
2031546
NSF-PAR ID:
10265904
Author(s) / Creator(s):
Date Published:
Journal Name:
JMIR Formative Research
Volume:
5
Issue:
5
ISSN:
2561-326X
Page Range / eLocation ID:
e23009
Format(s):
Medium: X
Sponsoring Org:
National Science Foundation
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    Importance

    The frequent occurrence of cognitive symptoms in post–COVID-19 condition has been described, but the nature of these symptoms and their demographic and functional factors are not well characterized in generalizable populations.

     Objective

    To investigate the prevalence of self-reported cognitive symptoms in post–COVID-19 condition, in comparison with individuals with prior acute SARS-CoV-2 infection who did not develop post–COVID-19 condition, and their association with other individual features, including depressive symptoms and functional status.

     Design, Setting, and Participants

    Two waves of a 50-state nonprobability population-based internet survey conducted between December 22, 2022, and May 5, 2023. Participants included survey respondents aged 18 years and older.

     Exposure

    Post–COVID-19 condition, defined as self-report of symptoms attributed to COVID-19 beyond 2 months after the initial month of illness.

     Main Outcomes and Measures

    Seven items from the Neuro-QoL cognition battery assessing the frequency of cognitive symptoms in the past week and patient Health Questionnaire-9.

     Results

    The 14 767 individuals reporting test-confirmed COVID-19 illness at least 2 months before the survey had a mean (SD) age of 44.6 (16.3) years; 568 (3.8%) were Asian, 1484 (10.0%) were Black, 1408 (9.5%) were Hispanic, and 10 811 (73.2%) were White. A total of 10 037 respondents (68.0%) were women and 4730 (32.0%) were men. Of the 1683 individuals reporting post–COVID-19 condition, 955 (56.7%) reported at least 1 cognitive symptom experienced daily, compared with 3552 of 13 084 (27.1%) of those who did not report post–COVID-19 condition. More daily cognitive symptoms were associated with a greater likelihood of reporting at least moderate interference with functioning (unadjusted odds ratio [OR], 1.31 [95% CI, 1.25-1.36]; adjusted [AOR], 1.30 [95% CI, 1.25-1.36]), lesser likelihood of full-time employment (unadjusted OR, 0.95 [95% CI, 0.91-0.99]; AOR, 0.92 [95% CI, 0.88-0.96]) and greater severity of depressive symptoms (unadjusted coefficient, 1.40 [95% CI, 1.29-1.51]; adjusted coefficient 1.27 [95% CI, 1.17-1.38). After including depressive symptoms in regression models, associations were also found between cognitive symptoms and at least moderate interference with everyday functioning (AOR, 1.27 [95% CI, 1.21-1.33]) and between cognitive symptoms and lower odds of full-time employment (AOR, 0.92 [95% CI, 0.88-0.97]).

     Conclusions and Relevance

    The findings of this survey study of US adults suggest that cognitive symptoms are common among individuals with post–COVID-19 condition and associated with greater self-reported functional impairment, lesser likelihood of full-time employment, and greater depressive symptom severity. Screening for and addressing cognitive symptoms is an important component of the public health response to post–COVID-19 condition.

     
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Emerging viral pandemics can place extraordinary and sustained demands on public health and health systems and on providers of essential community services. Modeling the Covid-19 pandemic spread is challenging. But there are data that can be used to project resource demands. Estimates of the reproductive number (R) of SARS-CoV-2 show that at the beginning of the epidemic, each infected person spreads the virus to at least two others, on average (Emanuel et al. in N Engl J Med. 2020, Livingston and Bucher in JAMA 323(14):1335, 2020). A conservatively low estimate is that 5 % of the population could become infected within 3 months. Preliminary data from China and Italy regarding the distribution of case severity and fatality vary widely (Wu and McGoogan in JAMA 323(13):1239–42, 2020). 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Public health efforts depend heavily on predicting how diseases such as those caused by Covid-19 spread across the globe. During the early days of a new outbreak, when reliable data are still scarce, researchers turn to mathematical models that can predict where people who could be infected are going and how likely they are to bring the disease with them. These computational methods use known statistical equations that calculate the probability of individuals transmitting the illness. Modern computational power allows these models to quickly incorporate multiple inputs, such as a given disease’s ability to pass from person to person and the movement patterns of potentially infected people traveling by air and land. This process sometimes involves making assumptions about unknown factors, such as an individual’s exact travel pattern. 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    In the second stage, a new sample of parents was recruited. New parents had to meet the same sampling criteria as in W1 (be at least 18 years old, reside in the United States, reside with a romantic partner, and be a parent living with at least one biological child). Also similar to the W1 procedures, we oversampled men, Black individuals, individuals who did not complete college, and individuals who identified as politically conservative to increase sample diversity. A total of 1,207 parents participated in the W2 survey. Data quality checks led to the removal of 5.7% of the respondents, resulting in a final sample size of new respondents at Wave 2 of 1,138 parents.

    In both stages, participants were informed that the survey would take approximately 20 minutes to complete. All panelists were provided monetary compensation in line with Prolific’s compensation guidelines, which require that all participants earn above minimum wage for their time participating in studies.
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    This work is licensed under the Creative Commons Attribution 4.0 International License. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/. In accordance with this license, all users of these data must give appropriate credit to the authors in any papers, presentations, books, or other works that use the data. A suggested citation to provide attribution for these data is included below:            

    Carlson, Daniel L. and Richard J. Petts. 2022. Study on U.S. Parents’ Divisions of Labor During COVID-19 User Guide: Waves 1-2.  

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    Abstract

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    Abstract

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