Learning from the Experiences of COVID-19 Survivors: A Descriptive Study

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 that are 18-years or older who reside in the United States and 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, and advertisement through professional and other networks. The main outcomes measured include knowledge on contraction/transmission of the virus, symptoms, and personal experiences on road to recovery.

Results

A total of 72 participants (53 females/19 males, ages 18 - 73 yrs. old, mean = 41-yrs.) from 22 U.S. states participated in this study. We found that the top known source of how people contracted the COVID-19 virus was through a family or household member (n=26 or 35%). This was followed by essential workers contracting the virus through the workplace (n=13 or 18%).

Participants reported up to 27 less-documented symptoms that they experienced during their illness such as brain/memory fog, palpitations, ear pain/discomfort and neurological problems. In addition, 47 out of 72 participants (65%) reported that their symptoms lasted longer than the commonly cited 2-weeks even for mild cases of COVID-19. In our study, the mean recovery time was 4.5-weeks, and exactly one-half of survivors (50%) still experienced lingering symptoms of COVID-19 after an average of 65-days following illness onset. Additionally, 37 participants (51%) reported that they experienced stigma associated with having COVID-19.

Conclusion

This study presents preliminary findings which suggests 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. Although a larger study is needed to validate these results, it is important to note that 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.