Accepted for/Published in: JMIR Formative Research
Date Submitted: Jul 29, 2020
Date Accepted: Apr 13, 2021
Date Submitted to PubMed: Apr 20, 2021
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Learning from the Experiences of COVID-19 Survivors in the United States through Crowdsourcing
ABSTRACT
Background:
There are still many unanswered questions about the novel coronavirus, however, a largely underutilized source of knowledge are the millions of people who have recovered after contracting the virus. This includes majority of undocumented cases of the COVID-19 which are classified as mild or moderate and received little to no clinical care during the course of illness.
Objective:
To document and glean insights from the experiences of persons with first-hand experience with coronavirus, especially the so-called mild to moderate cases that self-resolved in isolation.
Methods:
This online-based survey study called C19 Insider Scoop recruited adult participants (> 18-years old) who reside in the United States and self-identified as having contracted COVID-19 and tested positive for the virus. This paper describes recruited participants between the dates of May 10 and June 18, 2020. Participants were recruited through various methods including online support groups for COVID-19, advertisement in local news outlets, and advertisement through professional and other networks. The eligibility criteria for this study included being 18-years or older, residing in the United States, and testing positive for COVID-19 or antibodies.
Results:
A total of 54 participants (70% Female, ages 20 – 71 years old, mean = 43-yrs.) from 20 U.S. states fully completed the survey. Their results show that up to 35% of participants attribute the source of their virus to a family or household member and there are many less-documented symptoms associated with COVID-19. In addition, more than 70% of survivors experience symptoms lasting longer than the commonly cited 2-weeks even for mild cases. In our study, the mean recovery time was 4.7-weeks, and more than half of survivors (56%) still experienced lingering symptoms of COVID-19 after an average of 63-days following illness onset. Finally, survivors share some insights from their personal experience which they hope can assist the general public.
Conclusions:
Findings from this study suggest that emphasis on family/household spread of COVID-19 may be lacking and there is a general underestimation of the recovery time even for mild cases of the virus. As more people experience COVID-19, insights from prior survivors can enable a more informed public, pave the way for others who may be affected, and guide further research.
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Copyright
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