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

Prioleau, T.

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.