JMIR FORMATIVE RESEARCH

Prioleau

Original Paper

Learning From the Experiences of COVID-19 Survivors:
Web-Based Survey Study
Temiloluwa Prioleau, PhD
Dartmouth College, Hanover, NH, United States

Corresponding Author:
Temiloluwa Prioleau, PhD
Dartmouth College
9 Maynard Street
Hanover, NH, 03755
United States
Phone: 1 6036468730
Email: tprioleau@dartmouth.edu

Abstract
Background: There are still many unanswered questions about the novel coronavirus; however, a largely underutilized sourceof 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 indealing 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 residein 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 professionaland 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 thevirus 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.
(JMIR Form Res 2021;5(5):e23009) doi: 10.2196/23009
KEYWORDS
patient-reported outcomes; coronavirus; COVID-19; outcome; crowdsourcing; social media; internet; survivor; experience

Introduction
The COVID-19 pandemic has significantly impacted the
majority of countries in the world, with a total of more thanhttps://formative.jmir.org/2021/5/e23009

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41.1 million confirmed cases and over 1.1 million deaths
reported worldwide as of October 22, 2020 [1]. Months into thepandemic, there are still many unknowns about the novel
coronavirus, its transmission, and the experiences of people
who have been infected by the virus [2,3]. However, it is known
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that the disease severity of COVID-19 can range from mild tocritical. Studies from the Centers for Disease Control andPrevention (CDC) in the United States and China show thataround 80% of the COVID-19–infected population experience“mild-to-moderate” symptoms [4,5]. Due to the sheer volume
of infected persons and the limited capacity of the health caresystems, it was and still is recommended that patients with
mild-to-moderate cases of COVID-19 manage their illness in
isolation [2]. Many of these patients, especially in the earlymonths of the outbreak (ie, February and March 2020 in the
United States [6]), received little to no clinical care [7]; hence,
there is a critical gap in knowledge about their experiences with
COVID-19. According to the CDC, “recognition of factors
associated with [the] amplified spread during the early
acceleration period will help inform future decisions” and“strengthen systems to detect potential transmission resurgence”[6].
Unlike hospitalized patients, the population of people with
mild-to-moderate symptoms of COVID-19 remains largely
understudied and are among the “undocumented masses”; yetthis population contributes significantly to the rapid transmissionof the virus [3,8,9]. To fill in the gap, this study aims to enable
the research and larger community to glean insights from theexperiences of COVID-19 survivors, especially those whosejourney with the virus is not captured in clinical or medical
records. Through personal stories, this study aims to bringawareness to how people in the United States contracted thecoronavirus, the range of symptoms experienced during illness,duration of illness, and their experiences on the road to recovery.
Such knowledge can inform guidelines for the vast majority ofcases of COVID-19 that are considered to be of
mild-to-moderate severity, especially given the current
resurgence in the United States [10]. In this work, we developed
and deployed a web-based platform for collating experiential
data from persons who recovered and/or are on the road torecovery from COVID-19. As previously mentioned, the primary
aim of this study is to garner insights from persons with
first-hand experience with COVID-19, especially cases ofmild-to-moderate severity that are less documented in literature.
A total of 72 subjects from 22 US states withlaboratory-confirmed positive tests for COVID-19 (68/72, 94%)
and presumptively positive as identified by clinical personnel(4/72, 6%) were recruited to share their experience with
COVID-19. Details on the recruitment and participantcharacteristics are described in the Methods section.

Prioleaugroups such as Survivor Corps [12], advertisement in local
newspapers, and by sharing about the research study throughprofessional and other networks. In total, 72 participants wererecruited from May 10 through October 1, 2020, although the
majority (ie, 54/72, 73%) of the participants were recruited
between May 10 and June 18, 2020. About half of theparticipants in this study (35/72, 49%) were recruited from theSurvivor Corps online support group following the participant’s
self-identification of having had COVID-19. For this population,a recruitment message was sent directly to prospective
participants informing them about the study and requesting their
participation if they were eligible. All interested participants
who learned about the study were directed to the project website
and invited to first complete a presurvey on the C19 Insider
Scoop project website to screen for the following eligibility
criteria: 18 years or older, living in the United States, and tested
positive for COVID-19 and/or COVID-19 antibodies.
Participants who met these eligibility requirements were thenprovided a password by email and a link to the full survey,
through which they shared their story of COVID-19. In total,
105 prospective participants completed the presurvey and 72
participants completed the full survey, thereby providing data
to be presented in this study. Eligible participants whocompleted the study requirements (ie, presurvey and full survey)
were provided the option of receiving a monetary incentive forparticipation.

Study Description

The full survey was developed using the well-established
Qualtrics survey software under Dartmouth College’s license
to ensure secure data storage behind institutional firewalls. The
survey questions in this study were informed by various sources,
including the CDC’s coronavirus case report form [13], theNational Institutes of Health (NIH) repository of COVID-19
research tools [14], and knowledge gaps identified in theliterature [7]. The full survey included questions covering thethemes of descriptive characteristics, contraction or transmissionof the virus, symptoms and coping strategies, and the road torecovery. In addition, adaptive questioning was implemented
such that some questions were only displayed based on
responses to previous items. On two occasions, additions weremade to the full survey during data collection. More specifically,on May 21, 2020, the symptoms of headaches, muscle or bodyaches, and dizziness were added to the default checklist provided
in this study, after 20 participants had completed the full survey.
On May 28, 2020, questions on antibody testing were added,
after 32 participants had completed the full survey. Participants
who completed the survey before each of these revisions weremade have no responses to the new questions added after their
participation in the survey. An exact copy of the full survey
used in this study is presented in Multimedia Appendix 1.

This research study was approved by Committee for Protectionof Human Subjects (CPHS) at Dartmouth College, New
Hampshire, United States, and is reported in accordance with
the CHERRIES (Checklist for Reporting Results of Internet
E-Surveys) statement for web-based surveys [11]. We recruited
COVID-19 survivors defined as persons who tested positive
for coronavirus and/or who were later confirmed to have had
the virus by testing positive for antibodies. Participants wererecruited through multiple sources, including online support

A complete demographic summary of the participants ispresented in Table 1. Of the 72 (female, n=53; male, n=19)
participants, 68 (94%) received a positive laboratory test and/or
positive antibody test for COVID-19, and the remaining 4 (6%)
were confirmed presumptively positive by clinical personnel.
Participants’ age ranged from 18 to 73 years. They wereresidents of a total of 22 US states, with the highest
representation from New York. The race demographics included
43 (60%) White, 14 (19%) Black or African American, 6 (8%)

Methods

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Asian, and 2 (3%) American Indian or Alaska Native
participants, and the remaining 7 (10%) reported “other” ormixed race. In addition, a total of 23 (32%) participants had atleast one pre-existing medical condition, and 6 (8%) participants
had more than one pre-existing medical condition. The mostcommon pre-existing conditions reported included asthma(15/72, 21%), high blood pressure (4/72, 6%), andimmunosuppressive conditions (3/72, 4%). Other descriptive

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Prioleaufactors such as the participants’ highest level of education,
household income, and occupation are detailed in Table 1.
The following subsections describe other categories of the fullsurvey, the results of which will be presented, including (1)onset, testing, and contraction of COVID-19; (2) a deeper lookat COVID-19 symptoms; (3) the road to recovery fromCOVID-19; and (4) insights from COVID-19 survivors.

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Table 1. Demographic summary of participants (ie, COVID-19 survivors) in the C19 Insider Scoop Study (N=72).
Characteristics

Value

Age (years), mean (SD)41 (14)Age range (years)

18-73

Sex, n (%)
Female53 (74)Male

19 (26)

Race, n (%)
White

43 (60)Black or African American

14 (19)

Asian

6 (8)

American Indian or Alaska Native

2 (3)Other or Mixed race

7 (10)US state of residence, n (%)
New York

25 (35)

California

5 (7)Georgia

5 (7)Massachusetts

4 (6)Virginia

4 (6)

Texas

3 (4)

New Hampshire

3 (4)8 other states a2 (3)7 other statesb

1 (1)Pre-existing medical condition, n (%)
No, with pre-existing condition

48 (68)

Yes, with pre-existing condition

23 (32)

Not reported

1 (1)COVID-19 testing, n (%)
Positive laboratory or antibody test

68 (94)Presumptively positive

4 (6)Highest level of education, n (%)
4-year degree

25 (35)

Professional degree

18 (25)

Some college

14 (19)High school or GEDc

6 (8)Doctorate

5 (7)2-year degree

4 (6)Household income level (US $), n (%)<20,000

13 (18)40,000-79,999

9 (12)

80,000-139,999

25 (35)140,000-199,999

15 (21)≥200,000

9 (12)

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Characteristics
Not reported

Prioleau
Value
1 (1)

Occupation, n (%)

aNonessential worker

20 (28)Essential worker (health care)

14 (19)Essential worker (non–health care)

14 (19)

Unemployed

12 (17)

Student

7 (10)

Retired5 (7)Alabama, Ohio, Illinois, Maryland, Louisiana, North Carolina, Washington, VermontbIndiana, Missouri, Arkansas, Wisconsin, New Jersey, Connecticut, Pennsylvaniac

GED: Tests of General Educational Development.

Onset, Testing, and Contraction of COVID-19
Within the full survey, there were a total of 8 questions that
addressed topics related to the onset, testing, and contractionof COVID-19, including the following:
1.
2.
3.
4.
5.

6.

7.

Did you test positive for COVID-19?
When did you start to feel ill or experience symptoms?
When did you take the COVID-19 test?
Were you working from home before you showed
symptoms and/or tested positive for COVID-19?
Were you using any precautionary measures before youcontracted COVID-19? If so, please share what measures
you had in place (eg, strict adherence to social distancing,frequent use of masks in public spaces).
Do you know how you contracted COVID-19? If yes, pleaseshare as much detail as possible regarding how you
contracted COVID-19.
Do you know of any others who may have contracted
COVID-19 from you?

Responses to the above questions were summarized and arereported in a single subsection in the Results section.

A Deeper Look at COVID-19 Symptoms
Within the full survey, there were a total of 2 questions that
addressed topics related to COVID-19 symptoms, including thefollowing:
1.

2.

1.

Are you fully recovered from COVID-19?
•[If you still have lingering symptoms], please list thelingering symptoms that you currently have.

2.

When do you believe you fully recovered from COVID-19
and associated symptoms?
How many weeks did it take you to recover from majorityof the symptoms associated with COVID-19?
Have you experienced any stigma associated with having
COVID-19?
•[If yes], please share more about your experience withstigmas associated with having COVID-19.

3.
4.

Responses to the above questions were summarized and arereported in a single subsection in the Results section.

Insights From COVID-19 Survivors
Within the full survey, there was 1 open-ended question that
addressed topics related to insights from COVID-19 survivors,
namely:Are there any comments or insights that you want to share withregards to your experience with COVID-19?
Responses to the above question were summarized and arereported in a single subsection in the Results section.

What symptoms did you experience [while ill with
COVID-19]? Check all that apply.
•[If “other” symptoms is selected from the above
checklist] What other symptoms did you experience?

Onset, Testing, and Contraction of COVID-19

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Within the full survey, there were a total of 4 questions that
addressed topics related to the road to recovery from COVID-19,
including the following:

Did you visit a hospital or clinical care for treatment during
the course of your illness?
•[If you were hospitalized], how many days were you
hospitalized for?

Responses to the above questions were summarized and arereported in a single subsection in the Results section.

XSL• FOThe Road to Recovery From COVID-19

Results
Figure 1A shows that 51 of 72 (72%) participants experienced
onset of COVID-19 symptoms in March 2020, about 40 days
after the first reported case in the United States [15]. Moreover,
30 of 72 (42%) participants were working from home at thetime of their symptom onset, whereas 42 (58%) were notworking from home. In addition, 46 of 72 (64%) participants
reported to have been practicing the recommended precautionary
measures prior to the onset of their symptoms, such as use ofmasks (n=25), social distancing (n=22), frequent handwashing
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JMIR FORMATIVE RESEARCH(n=14), and use of gloves (n=12). However, it is important tonote that the majority of participants experienced symptom
onset during the first accelerated spread of COVID-19 in the
United States, in March 2020, during which recommendations
for personal protective practices were only beginning to unfold[6]. In retrospect, 63 of 72 (87%) participants could narrow
down the source of how they might have contracted
SARS-CoV-2; 62% of these participants shared probablesources, whereas 25% shared what they considered to be definite
sources of their infection. From the reported data shown in
Figure 1B and 1C, the most prevalent source of virus contraction
was from a family or household member. More specifically, 26
of 72 (36%) participants attributed the source of their virus toa family or household member. Additionally, 27 (38%)
participants reported that at least one other person in their family

Prioleauor household had contracted COVID-19 from them. This finding
suggests that there is a moderate probability of the coronavirus
spreading among persons sharing a living space even when theappropriate precautions are taken to minimize the risk. However,emphasis on family or household transmission of COVID-19
is limited. The second most prevalent source of virustransmission was the essential worker who contracted the virus
while on the job. This was reported by 13 of 72 (18%)
participants. These two sources of virus transmission were also
the top sources identified from persons who shared more definite
sources of their infection. The results obtained show othersources of virus transmission reported by the participants, suchas casual gatherings (7/72, 10%), workplace for nonessential
workers (6/72, 8%), and even the grocery store (4/72, 6%).

Figure 1. Overview of COVID-19 onset, testing, and contraction for participants in this study. (A) Month of symptom onset; (B) knowledge about thesource of infection; (C) prevalent sources of virus transmission; and (D) time lag from symptom onset to testing for COVID-19.

During the early months of the outbreak in the United States,
limitations in testing was identified as one of the multiple factorsthat contributed to the rapid spread of the disease [6,8]. Figure
1D shows that following infection, participants experienced
large variability in the time it took to gain access to COVID-19
testing; this ranged from 3 days before symptom onset to 62
days after symptom onset among this study’s participants. The
average time from symptom onset to testing was 10.2 days, with
about 10% of the participants getting tested more than 35 days
after their symptoms began. Although this study required a
COVID-19–positive test to be eligible for participation, we
learned during the recruitment phase that a large number ofpeople were continuously denied access to testing during theirillness. For example, a patient-led study with over 600
participants who experienced COVID-19 symptoms show that
“47.8% were either denied testing or not tested for anotherreason” [16]. The delay in testing and uncertainty that persons
with COVID-19 symptoms experienced is a possible contributor
to the further spread of the virus. In addition, a few participants
reported that they received treatment for sinus infections,bronchitis, and other conditions without testing, as a result they
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may not have isolated early in their journey with the virus due
to lack of knowledge.

A Deeper Look at COVID-19 Symptoms
There is no dearth on the reported characteristics of COVID-19
for severe cases among hospitalized patients [5,7,17,18].
However, severe cases account for only about 20% of the total
population of confirmed COVID-19 cases, and several
differences have been identified between mild and severe cases[2,19]. Therefore, it is critical to also understand the journey of
nonhospitalized persons with COVID-19 who account for 80%
or more of the confirmed cases. The majority of participants inthis study (60/72, 83%) managed their symptoms at home and/or
in isolation (see Figure 2A); these participants represent people
with mild-to-moderate severity of COVID-19. This is inalignment with the estimates in the current literature that about
80% of the COVID-19 cases are mild to moderate as opposed
to severe [2,18]. Participants were asked to identify all
symptoms they experienced during their illness with COVID-19.
Figure 2B shows the prevalence of the well-recognized
COVID-19 symptoms reported in this study population (N=72),
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with the top-4 reported symptoms being fatigue (57/72, 79%),
shortness of breath (52/72, 72%), decreased sense of smell or
taste (52/72, 72%), and fever (51/72, 71%). These more common
symptoms have also been identified in earlier studies, albeit
with different percentages for frequency of occurrence in various
populations [18,20,21]. More interestingly, in addition to thewell-recognized symptoms of COVID-19, 30 of 72 (41%)
participants reported other less-documented symptoms that theyexperienced during their illness. Figure 2C shows a list of other
patient-reported symptoms associated with COVID-19 and theprevalence of each symptom among the study population. The
most prevalent patient-reported symptoms include brain fog or
memory loss, which was reported by 9 (13%) participants;
palpitations (ie, elevated heart rate) and sinus pain or pressure,both reported by 5 (7%) participants; and lack of appetite, ear
pain or discomfort, and neurological problems, all of whichwere reported by 4 (6%) participants each. Many of these othersymptoms have not been emphasized in prior work. From thePrioleau
list of 27 additional patient-reported symptoms, cytokine storm
is considered the most severe and can lead to rapid deterioration,
multiple organ failure, and mortality [22-24]. Cytokine storm
is characterized by a lethal overreaction of the immune system
in response to an infection or disease. The single participant
who experienced cytokine storm (male, 62 years) was tested
for COVID-19 on April 4, 2020, and then examined by aregistered nurse; however, signs of the ensuing havoc were not
identified at that point. Following clinical evaluation, theparticipant was advised to self-quarantine; however, within 72
hours, he was admitted to the hospital as “COVID-19 hadtriggered a massive cytokine storm.” He was hospitalized for
36 days, on the ventilator for 9 days, and needed surgery torepair the collapse of his left lung due to COVID-19.
Fortunately, he lives to tell his story and strongly urges that
COVID-19 patients should be evaluated, early in their illness
and possibly during testing, for signs of cytokine storm toprevent rapid deterioration and save lives.

Figure 2. Overview of the type of care received and COVID-19 symptoms reported by participants in this study. (A) The type of care received by
COVID-19 survivors; (B) list and prevalence of more common COVID-19 symptoms; and (C) other less-documented symptoms of COVID-19.

The Road to Recovery From COVID-19
There are many unknowns about the road to recovery for persons
who contract COVID-19. According to a February 2020 remark
from the World Health Organization (WHO) Director-General,
the recovery time is 2 weeks for persons with mild disease and3-6 weeks for persons with severe or critical disease [25].
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However, our results show that 47 of 72 (65%) participants
experienced a recovery time longer than 2 weeks (see Figure
3A). More specifically, we found that the mean time to recoverfrom the “majority of symptoms” across all participants was
4.5 weeks; the average recovery time for nonhospitalized
patients (ie, patients with mild-to-moderate disease severity)
was 4.2 weeks, whereas the average recovery time for
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hospitalized patients (ie, patients with a more severe experienceof COVID-19) was 6.2 weeks or more. A few hospitalized
patients reported that they had not recovered from majority of
their symptoms at the time of participating in the study; hence,
the length of their illness at the time of participation was used
as a proxy (ie, date of participation minus date of symptom
onset). Our study also shows that COVID-19 survivors

Prioleauexperienced high variability in their recovery time from theillness, ranging from 0 days as reported by asymptomaticpatients to 18 weeks as reported by a 58-year-old female
participant with one pre-existing condition and 3 hospital visits
for COVID-19–related symptoms, including dehydration andvestibular migraine.

Figure 3. Overview of the road to recovery from COVID-19 for participants in this study. (A) Percentage of COVID-19 survivors who experienced
lingering symptoms and a recovery time longer than the commonly cited 2-week period; (B) duration of the majority of symptoms reported (meanduration: 4.5 weeks); and (C) list and prevalence of lingering symptoms associated with COVID-19.

In addition to the longer recovery times identified in this study,
we found that 36 of 72 (50%) participants still experienced
lingering symptoms of COVID-19 even after an average of 65
days following their illness onset. A list of such lingering
symptoms and changes to general health identified byparticipants of this study is illustrated in Figure 3C. The mostcommon issues identified include fatigue reported by 24 of 72(33%) participants; followed by shortness of breath andpalpitations reported by 10 (14%) participants; and chest painor tightness, anxiety or depression, brain fog or memory loss,
muscle aches, and coughing bouts—all reported by 6-7
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their contraction of COVID-19, whereas 35 (49%) reported
otherwise. There were 9 themes that stood out from further
descriptions of the stigmas experienced by those who contracted
COVID-19. The most prevalent stigma was avoidance by others
after recovery (12/72, 17%), followed by people undermining
the illness or experience with COVID-19 (5/72, 7%). Other
examples of stigma reported include hostility and dismissalfrom clinical or medical staff and being blamed for contracting
and spreading the virus.
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Table 2. Experience with stigma reported by participants (ie, COVID-19 survivors) in the C19 Insider Scoop Study (N=72).
Observation

Value, n (%)

Experienced stigma associated with having COVID-19
Yes

37 (51)No

35 (49)

Examples of stigmas reported
Avoidance by others (eg, friends or neighbors) after recovery

12 (17)People undermining the illness or experience with COVID-19

5 (7)Hostility and dismissal from clinical or medical staff

4 (6)Blame for contracting and spreading the virus

4 (6)Shame and name-calling

3 (4)Discrimination at places of work and living

3 (4)Blame for the stay-at-home orders and the economic impact

1 (1)Reprimand from household members at risk of exposure

1 (1)Organizations expressing unjust entitlement to medical information

1 (1)Insights From COVID-19 Survivors
COVID-19 survivors are an invaluable resource not being fully
utilized as a source of knowledge. Through the surveys
conducted in this study, these survivors shared insights that they
believe will help the society at large better cope with the realitiesof the ongoing pandemic. Many of these insights are targeted
toward the larger population who may not yet have been infectedby the coronavirus; however, given the recent rise in COVID-19
cases in the United States and other countries [10], these insights
are critical for the general public.
Salient insights obtained from these COVID-19 survivors arelisted below (with a few direct quotes from participants):
1.

2.
3.

4.

5.

6.

7.

“Any symptom can be the virus so self-isolate even if you
have a tickle in your throat…It is easy to mistake a mildcase of COVID-19 for a cold or allergies” in the earlystages.
Understand the “fact that doctors and nurses do not have
all the answers” so set your expectations accordingly.
The journey with COVID-19 can be scary and lonely, as
well as physically, mentally, and emotionally tasking. “Youhave to advocate for yourself every step of the way.”
Young and healthy people without any underlying medical
conditions can also have a rough journey with COVID-19.
Take it seriously. Protect yourselves and others.
“The disease presents differently in all patients. It is not aone size fits all.” For some it is short-lived, whereas others experiencelong-term health issues due to COVID-19.
If you contract the virus, take it day by day. Be patient withthe recovery process as it can be long and volatile.
Symptoms and lingering symptoms can come in waves.
Do not wait too long to go to the hospital (if needed), as adelay has led to worse outcomes for some. Additionally,some patients have gone to the hospital and been dismissed
or discharged prematurely. Trust your instinct as the sole
person with first-hand knowledge of your own illness.

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Do not allow distrust of the health care system to be yourexcuse for having a worse outcome. Ask questions during
clinical care to ensure that you are being prescribed the besttreatment for your specific situation.
9. Some medications used in severe cases can cause
hallucination and uncanny dreams.
10. Stigma during or after COVID-19 is a reality. Others may
have various reactions to people who contracted the virus,
especially during the initial phase of returning back tosociety. Some people may be cruel and unkind with theiractions or words.
11. COVID-19 tests and antibody tests can be inaccurate. There
are persons who test positive for COVID-19 and negative
for antibodies, and vice versa.
12. It is not sufficient for organizations to rely on bodytemperature as a primary means for determining COVID-19
symptoms. Some survivors never experienced fever,whereas others only experienced fever for a short time (eg,24 hours).

Discussion
Principal Findings
This paper presents a descriptive study that summarizes theexperiences of first-hand COVID-19 survivors with a particularfocus on how they contracted the virus, the range of symptoms
observed, the duration of illness, and their experiences on theroad to recovery. Our findings show that the top known sourceof how people contracted COVID-19 was through a family orhousehold member. Participants also reported a range ofsymptoms that they experienced during their illness, including
up to 27 less-documented symptoms such as brain or memory
fog, palpitations, ear pain or discomfort, and neurologicalproblems. Another key finding is that the majority of participants(47/72, 65%) experienced a recovery time longer than thecommonly cited 2-week period. The mean recovery time in thisstudy was 4.5 weeks, which was more specifically 4.2 weeks
for nonhospitalized patients (ie, mild-to-moderate cases) and
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6.2 weeks or more for severe cases (ie, patients who were
hospitalized for COVID-19 management). In addition, 51%(37/72) of the participants reported that they experienced stigma
associated with having COVID-19. Examples of stigmas sharedby our study participants include avoidance by others after
recovery and people undermining their illness or experience
with COVID-19. Finally, participants shared insights from theirpersonal journey with COVID-19 in the hope to inform andencourage the general public, especially others who may not
yet have been infected by the coronavirus.

Comparison with Prior Work
Majority of the early literature that presented the characteristics
of COVID-19 primarily focused on persons with severe casesof the disease or hospitalized patients [5,18,20,21]. This createda critical gap in the literature with regard to the majority of
COVID-19 cases (~80%) that are categorized as mild or
moderate (ie, nonhospitalized cases). One of the first questions
related to the COVID-19 pandemic is how is it spreading amongpeople? Early sources of virus transmission in the United States
were primarily from international travelers returning to thecountry, such as the “First [Reported] Case of 2019 Novel
Coronavirus in the United States” [15]. However, community
spread became prevalent not too long after. Later reports by the
CDC identified transmission through a family member or workcolleague as a prevalent source of virus contraction as well astransmission through social gatherings such as dining at arestaurant [26,27]. Results from this study show agreement thatfamily or household- and work-related transmission of
COVID-19 is prominent.
Other studies have now begun to uncover characteristics of
mild-to-moderate cases of COVID-19. For example, Liu et al[19] reported viral shedding patterns observed in patients withmild and severe COVID-19. They identified some key
differences between patients with mild and severe cases of
COVID-19, thereby supporting the need for studying both
populations comprehensively. Xu et al [28] presented atelemedicine system to continuously monitor the progressionof home-quarantined patients with COVID-19, 74 of whom had
confirmed infection. They identified symptoms and trajectories
that were indicative of the need for hospitalization. More closely
related to this work, Jeon et al [29] used a combination of
biomedical literature and social media data to characterize thesymptoms of COVID-19. They identified 25 novel symptoms
by analyzing social media posts, specifically Twitter posts.
Some of the less-common symptoms identified in their workalign with the less-documented symptoms reported by theparticipants of this study, such as ear and eye problems, weight
loss, and memory disorder. However, this study’s findings also
include symptoms that were not identified by Jeon et al [29],such as worsened pre-existing condition (eg, asthma) andelevated blood pressure.
Even fewer studies in the literature have focused onunderstanding the time to recovery after COVID-19 infection.
One of the earliest sources of information on recovery time wasa February 2020 remark from the WHO Director-General, whichstated an average recovery time of 2 weeks for persons withhttps://formative.jmir.org/2021/5/e23009

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mild disease and 3-6 weeks for those with severe or criticaldisease [25]. Subsequently, a CDC study found thatapproximately 35% of symptomatic outpatients with COVID-19
had not returned to their baseline health 14-21 days after thetest date [9]. Carfi et al [30] assessed persistent symptoms inpatients after acute COVID-19 and found that 87.4% of patientswith severe disease reported at least 1 symptom, particularly
fatigue and dyspnea, after an average of 60 days from symptom
onset. Results from this study show the average recovery time
for mild cases is 4.2 weeks and that for severe cases is 6.2 weeks
or more. This finding is consistent with the findings from the
CDC report [9] and those reported by Carfi et al [30]; however,
our results provide concrete numbers based on participants inthis study.

Limitations
There are several limitations to this study. First, the sample sizeof the study is small compared to the total number of people in
the United States that have contracted COVID-19. However,this study benefits from diverse recruiting strategies and thus
has representation from 22 of the 50 states in the country.
Second, this study relies on participants’ ability to recall andshare their experience with COVID-19. Self-report–based
studies have well-known limitations such as recall bias.
However, we believe this bias is minimized because the majorityof the study participants experienced symptom onset in March
2020 and were recruited between the months of May and June
2020, suggesting that these participants were recruited about 2
months after they contracted the virus. In addition, the average
duration of illness was 4.5 weeks across all participants, andparticipation in this study required recovery fromCOVID-19–related illness. Hence, we expect that the majorityof the participants enrolled into the study within their first monthafter recovery, thus maximizing their chance to accurately
remember their experience.

Conclusions
This study presents preliminary findings from a small cohortof COVID-19 survivors. It is well known that many people dorecover from COVID-19; however, the 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 morethan 2 weeks for patients with mild symptoms. In addition, anotable proportion of COVID-19 survivors are considered “longhaulers” [31,32]. This refers to people who experience lingering
symptoms weeks and even months after initial contraction of
the virus. More research is needed to understand the reasonsfor such diverse experiences with the novel coronavirus.
Moreover, thousands of people have died due to infection withthe same virus with disproportionate percentages reported among
Black and Hispanic populations in the United States [33]. Moreresearch is therefore needed to better understand the trajectoryof cases that ended in fatality and help prevent a similar outcome
for others. One of such efforts should be toward the early
detection of the cytokine storm triggered by SARS-CoV-2, as
this has been shown to cause fatality for some of the affected
population.

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JMIR FORMATIVE RESEARCH

Prioleau

Acknowledgments
The author acknowledges the many participants and advocates of the C19 Insider Scoop project with special thanks to S. Prioleau
for designing and building the project website for data collection. This work is supported by Dartmouth COVID-19 Spark funding
and a “RAPID” grant from the National Science Foundation (NSF) (award number: 2031546). The author TP conceived thestudy, developed the survey, curated the data, performed analyses, and wrote the manuscript. This author has full access to all
the data of this study and takes responsibility for the integrity of the data and accuracy of the data analysis.

Conflicts of Interest
None declared.

Multimedia Appendix 1
Survey questions administered to study participants.
[PDF File (Adobe PDF File), 158 KB-Multimedia Appendix 1]

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Abbreviations
CDC: Centers for Disease Control and Prevention
CHERRIES: Checklist for Reporting Results of Internet E-Surveys
CPHS: Committee for Protection of Human Subjects
NIH: National Institutes of Health
WHO: World Health Organization

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Edited by G Eysenbach; submitted 29.07.20; peer-reviewed by B Chen, R Zhong, M Wallwiener; comments to author 10.09.20; revised
version received 22.10.20; accepted 13.04.21; published 11.05.21
Please cite as:
Prioleau T
Learning From the Experiences of COVID-19 Survivors: Web-Based Survey StudyJMIR Form Res 2021;5(5):e23009
URL: https://formative.jmir.org/2021/5/e23009
doi: 10.2196/23009
PMID: 33878012©Temiloluwa Prioleau. Originally published in JMIR Formative Research (https://formative.jmir.org), 11.05.2021. This is an
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