Learning From the Experiences of COVID-19 Survivors: Web-Based Survey Study

  1. Temiloluwa Prioleau

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Abstract

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.

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  1. Version published to 10.2196/23009
  2. ScreenIT

    SciScore for 10.1101/2021.03.17.21253728: (What is this?)

    Please note, not all rigor criteria are appropriate for all manuscripts.

    Table 1: Rigor

    Institutional Review Board Statementnot detected.
    Randomizationnot detected.
    Blindingnot detected.
    Power Analysisnot detected.
    Sex as a biological variableOf the 72 (53 females, 19 males) subjects, 68 (94%) received a positive lab test and/or positive antibody test for COVID-19 while 4 (6%) were confirmed presumptively positive by a clinical personnel.

    Table 2: Resources

    Antibodies
    SentencesResources
    All interested participants who learned about the study were directed to the project website and invited to first complete a pre-survey on the C19 Insider Scoop project website [14] for screening on the eligibility requirements of being 18-years or older, living in the Unites States, and testing positive for COVID-19 and/or COVID-19 antibodies.
    COVID-19
    suggested: None

    Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).

    Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:
    Limitations: There are several limitations in this work. Firstly, the sample size of the study is small compared to the total number of people in the U.S. that have contracted COVID-19. However, this study benefits from diverse recruiting strategies and thus has representation from 22 out of the 50 states in the country. A second limitation is that this study relies on participant’s ability to recall and share their experience with COVID-19. There are well-known limitations of self-report-based studies such as recall bias. However, we believe this is minimized because majority of subjects in this study experienced symptom onset in March 2020 and were recruited between the months of May and June 2020, this means that participants were recruited about 2-months after they contracted the virus. In addition, the average duration of illness was 4.5-weeks across all subjects and participation in this study required recovery from the illness, hence we expect that majority of subjects participated within their first month after recovery thus maximizing their chance to accurately remember their experience. 3. Conclusion: It is well-known that many people do recover from COVID-19, however, results from this study show that the journey for some may be long and uncomfortable. To support an accurate depiction of the journey with COVID-19, it is important to recognize that the recovery time can be more than 2-weeks for mild symptoms. In addition, a notable percent of COVID-19 survivors are ...

    Results from TrialIdentifier: No clinical trial numbers were referenced.

    Results from Barzooka: We did not find any issues relating to the usage of bar graphs.

    Results from JetFighter: We did not find any issues relating to colormaps.

    Results from rtransparent:
    • Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
    • Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
    • No protocol registration statement was detected.

    About SciScore

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  3. Version published to 10.1101/2021.03.17.21253728 on medRxiv
  4. Version published to 10.2196/preprints.23009