Accepted Article

KALEB MICHAUD (Orcid ID : 0000-0002-5350-3934)

YOMEI SHAW (Orcid ID : 0000-0001-7048-8687)
DR. BRYANT R ENGLAND (Orcid ID : 0000-0002-9649-3588)
ALEXIS OGDIE (Orcid ID : 0000-0002-4639-0775)
DR. PATRICIA KATZ (Orcid ID : 0000-0002-8146-2519)

Article type : Original Article

Submitted: 06-Apr-2020
Accepted: 14-Apr-2020

Experiences of Patients with Rheumatic Diseases in the US

During Early Days of the COVID-19 Pandemic

Kaleb Michaud, PhD*1,2, Kristin Wipfler, PhD*1, Yomei Shaw, PhD1, Teresa A. Simon, MPH1,
Adam Cornish, PhD1, Bryant R. England, MD, PhD2,3, Alexis Ogdie, MD, MSCE4, Patricia
Katz, PhD5
*These authors contributed equally
1. FORWARD, The National Databank for Rheumatic Diseases, Wichita, KS
2. University of Nebraska Medical Center, Department of Internal Medicine, Division of
Rheumatology and Immunology, Omaha, NE
3. Veterans Affairs Nebraska-Western IA Health Care System, Omaha, NE
4. Perelman School of Medicine, University of Pennsylvania, Departments of Medicine
and Epidemiology, Philadelphia, PA
5. University of California San Francisco, Department of Medicine, San Francisco, CA
Corresponding author:
Kaleb Michaud
This article has been accepted for publication and undergone full peer review but has not been
through the copyediting, typesetting, pagination and proofreading process, which may lead to
differences between this version and the Version of Record. Please cite this article as doi:
10.1002/acr2.11148
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 University of Nebraska Medical Center
Accepted Article 986270 Nebraska Medical Center
Omaha, NE 68198
[email protected]

keywords: COVID-19, Rheumatology, DMARDs, Qualitative Studies

There was no funding for this study. FORWARD receives research funding from Novartis,
which is one of the manufacturers of hydroxychloroquine.

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 ABSTRACT
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Objective: Patients with rheumatic diseases such as rheumatoid arthritis (RA) and lupus
have increased risk of infection and are treated with medications that may increase this risk
yet are also hypothesized to help treat COVID-19. We set out to understand how the
COVID-19 pandemic has impacted the lives of these patients in the US.
Methods: Participants in a US-wide longitudinal observational registry responded to a
supplemental COVID-19 questionnaire by email on March 25, 2020 about their symptoms,
COVID-19 testing, healthcare changes, and related experiences during the prior two weeks.
Analysis compared responses by diagnosis, disease activity, and new onset of symptoms.
Qualitative analysis was conducted on optional free-text comment fields.
Results: Of the 7,061 participants invited, 530 responded, with RA the most frequent
diagnosis (61%). Eleven met COVID-19 screening criteria, of which two sought testing
unsuccessfully. Six others sought testing, three were successful, and all were negative. Not
quite half (42%) reported a change to their care in the prior two weeks. Qualitative analysis
revealed four key themes: emotions in response to the pandemic, perceptions of risks from
immunosuppressive medications, protective measures to reduce risk of COVID-19 infection,
and disruptions in accessing rheumatic disease medications including hydroxychloroquine.
Conclusion: After two weeks, many with rheumatic diseases already had important
changes to their healthcare, with many altering medications without professional
consultation or due to hydroxychloroquine shortage. As evidence accumulates on the
effectiveness of potential COVID-19 treatments, effort is needed to safeguard access to
established treatments for rheumatic diseases.

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 INTRODUCTION
Accepted Article As the novel coronavirus disease 2019 (COVID-19) became a pandemic, there were
early signs that people who were older, had a greater number of health conditions, or had
immunodeficiencies would be at greater risk of contracting it and/or having more severe
disease (1, 2). Patients with rheumatic diseases are known to be at higher risk of infection
due to immune dysregulation, comorbidities, and immune-modulating treatments (3-5). Many
of these diseases (e.g. rheumatoid arthritis [RA]) affect patients of an older age on average
(6). Beyond the typical challenges of self-managing a chronic disease, disease management
has become significantly more complex with the implementation of social distancing
including limiting non-essential healthcare visits. This has led to confusion about how
patients with rheumatic diseases should balance managing their disease and reducing their
risk of infection (7, 8).
In addition, there were early reports that treatments typically used for rheumatic
diseases might be effective against COVID-19 (9). Most notably, in vitro studies and a small
cohort study reported hydroxychloroquine (HCQ) showed some benefits in treating COVID-
19 (10-12). HCQ is a commonly used conventional disease-modifying anti-rheumatic drug
(DMARD) that reduces flares and mortality in systemic lupus erythematosus (SLE) and is a
common treatment for RA and other rheumatic diseases, In a small case-series, the
interleukin-6 (IL-6) inhibitor tocilizumab, a biologic DMARD, also showed promise for treating
respiratory manifestations related to COVID-19 (13). There are several ongoing clinical trials
examining the use of tocilizumab or sarilumab as treatment for COVID-19 (14). These early
reports and the emergency authorization by the FDA of HCQ as a treatment for COVID-19
have led to critical shortages in medication availability during a time when regular access to
medication is inherently more difficult (15).
The objective of this study was to understand how patients with rheumatic and
musculoskeletal diseases in the US have been impacted by the COVID-19 pandemic
through a one-time COVID-19 questionnaire querying their experiences during the last two
weeks of March 2020.

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 PATIENTS AND METHODS
Accepted Article The study population consisted of participants in FORWARD, The National Databank
for Rheumatic Diseases, a longitudinal open-enrollment observational patient registry (16).
Participants are volunteers recruited primarily from US rheumatologists, who complete
comprehensive, semiannual questionnaires online, by mail, or by telephone interview.
Participants included in this analysis responded to an online supplemental COVID-19
questionnaire focused on their experiences around COVID-19 symptoms, testing, and
medication access in the two weeks prior to questionnaire completion. The supplemental
COVID-19 questionnaire was sent via an email link on March 25, 2020 to all FORWARD
participants who had been invited to complete the current semiannual questionnaire.
Responses to the supplemental questionnaire were collected between March 25 and April 1,
2020. In order to be included in this study, participants must have previously completed a
semiannual questionnaire within the last two years. This study was approved by the Via
Christi Hospitals Wichita, Inc. Institutional Review Board (IRB00001674), and all participants
consented to participate.
Study variables. COVID-19 questionnaire. Participants were asked about their
rheumatic disease activity, development of any new symptoms (fever, cough, sore throat,
shortness of breath, fatigue, muscle pain, headache, gastrointestinal symptoms, chest pain,
abdominal pain, loss/change in taste or smell, anxiety), testing for COVID-19, and any
changes in their rheumatology treatment plan in the previous two weeks (See Appendix for
full list of items). Participants were given the opportunity to share free response comments
about their experiences during the COVID-19 pandemic.
Semiannual questionnaire. The most recently completed semiannual questionnaire
was linked to each participant’s COVID-19 questionnaire. Demographics (age, sex, race,
education level, marital status, urban/rural area, history of smoking, BMI, health insurance
status), primary rheumatic disease diagnosis, patient reported outcome measures (pain,
global severity, fatigue, Health Assessment Questionnaire-II [HAQ-II] –a validated measure
of physical function (17), Patient Activity Scale-II [PAS-II] – a validated measure of disease
activity (18, 19), comorbid conditions (heart disease, pulmonary disease, diabetes, renal

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 disease, liver disease), and medication use (DMARDs, corticosteroids, NSAIDs) were
Accepted Article
assessed.
Screening criteria. Screening criteria were applied to supplemental COVID-19
questionnaire respondents based on March 20, 2020 CDC recommendations for SARS-
CoV-2 testing priority (20) and included 1) fever, 2) at least one symptom of acute
respiratory illness (new cough, dyspnea, sore throat, chest pain, or loss of taste/smell within
the prior two weeks), and 3) at least one of the following: age at least 65 years, is in a long-
term care facility, has an autoimmune diagnosis, has a Rheumatic Disease Comorbidity
Index (RDCI) (21) of at least 2, or is a healthcare worker/first responder.
Quantitative analysis. Differences between COVID-19 questionnaire respondents
and non-respondents were assessed with Student’s t-tests for continuous variables and Chi-
squared tests for categorical variables. Responses to all COVID-19 items were tabulated
and significance was assessed with Chi-squared tests. All tests were 2-tailed and p-values
less than 0.05 were considered significant. Logistic regression modeled the association
between disease activity and reported cancelation or postponement of appointments, with all
sociodemographic, RDCI, diagnosis, and number of rheumatology and general practitioner
visits as covariables. Data were analyzed using Stata version 14.2 (22).
Qualitative analysis. Two of the authors (YS and TAS) independently read and open
coded the free text comments using a grounded theory approach (23-25). They met to
discuss their coding and notes and organized them into themes.
Figure creation. UpSetR v 1.4 was used to generate the UpSet plot (26).
Wordclouds.com was used to generate the word cloud using the cloud graphic from Font
Awesome 5.13 as a template. The relative size of each word represents the frequency with
which it appeared in the free response comments.

RESULTS
A total of 7,061 active FORWARD participants were sent the supplemental COVID-19
questionnaire. Of those, 530 responded during the first 7 days used for this report.
Rheumatoid arthritis was the most frequent diagnosis (61%). Geographic distribution was

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 diverse, with respondents representing 49 of 50 states (15% of respondents were from the
Accepted Article
Northeast, 31% Midwest, 27% South, and 25% West). Compared to non-respondents,
respondents were more likely to be Caucasian, had more education, were more likely to
have completed their semiannual questionnaire online rather than on paper or by interview,
and had lower disease activity (Table 1).
Symptoms, screening criteria, and SARS-CoV-2 testing. About half of
respondents reported experiencing new symptoms potentially associated with COVID-19 in
the two weeks prior to questionnaire completion. The most frequently reported new
symptoms were fatigue (18%), anxiety (16%), headache (13%), muscle pain (12%), and
cough (10%) (Table 2). Of the 530 respondents, 11 (2%) met COVID-19 screening criteria.
Of those 11, 2 had sought testing and, despite 1 of them reporting exposure to a confirmed
case, neither received it. In addition, six others who did not meet screening criteria reported
an attempt to get tested for COVID-19, and three received testing. None tested positive for
SARS-CoV-2 (Figure 1).
Changes in rheumatology care. Of the 530 COVID-19 questionnaire respondents,
471 answered questions about changes in their rheumatology care. Of these, 197 (42%)
reported some change to their care in the previous two weeks. Of the 197, 48% reported
canceled or postponed appointments, 24% switched to teleconference appointments, 14%
reported self-imposed changes to their medication list or dose, 11% reported physician-
directed changes to their medication list or dose, 10% were unable to obtain their
medication, and 4% were unable to reach their rheumatology office. Respondents with
higher disease activity were more likely to report canceled or postponed appointments, even
after controlling for demographics, comorbidities, and frequency of rheumatology/general
practitioner appointments in the past (OR 2.4 [1.3, 4.6]; p<0.01). Respondents who reported
experiencing new symptoms associated with COVID-19 in the last two weeks were more
likely to have medications added or removed by their physician (Table 3).
Patient experiences. The qualitative analysis identified four major themes from 211
respondents’ free response comments: emotions in response to COVID-19-related
experiences, perceptions of risk, protective measures to reduce risk of COVID-19 infection,

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 and impacts on rheumatic disease treatment and access to care including medications and
Accepted Article
rheumatology consultations (Table 4, Figure 2).
Emotions in response to COVID-19-related experiences. The most commonly
reported emotions were anxiety/nervousness/worry/fear. Respondents worried about being
infected and developing COVID-19, whether they would survive an infection, how their
medications would affect their risk, and the impact of the pandemic on access to
medications and health care. Some noted that anxiety/stress seemed to worsen their
arthritis symptoms. In response to the threat of COVID-19, most respondents reported a
desire to reduce their risk and take actions to protect themselves. Only a small minority of
participants expressed a lack of worry towards COVID-19.
Respondents also reported feeling uncertain about whether to stop taking their
medications, as well as whether their symptoms were due to COVID-19 or another condition,
such as allergies. They felt frustrated when confronted with difficulties in accessing
medication or obtaining permission to work from home. Practicing social distancing caused
feelings of sadness and loneliness in respondents who could no longer see family and
friends in person.
A few commenters expressed positive emotions, such as feeling grateful (e.g. for the
support of family or colleagues), hopeful, or wanting to help. One person did not want to get
tested for COVID-19, despite having symptoms consistent with COVID-19, because they
had quarantined at home since getting sick and did not want to waste scarce testing
supplies. Some acknowledged the need to manage negative emotions and stress.
Perceptions of risk. Many participants expressed beliefs about their increased risk of
infection/severe outcomes due to COVID-19 related to older age, having chronic conditions,
or exposure through the workplace or contact with family members. Many thought that use
of immunosuppressive medications increased their risk/potential severity of COVID-19, and
that stopping such medications could reduce their risk. This belief seemed to stem from
previous experiences of being instructed to stop immunosuppressive medications during
infections or before surgeries. A minority thought that taking HCQ might lower their risk of
developing COVID-19. Some commenters described setting personal limits for

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 acceptable/unacceptable risk, such as planning to stop going to work once COVID-19 cases
Accepted Article
emerged at their workplace.
Protective measures to reduce risk. The majority of respondents described adoption
of self-isolation and social distancing measures, often in response to state shelter-in-place
orders. They reported actions such as stopping in-person contact with family and friends,
staying at home except to buy groceries and go to medical appointments, having groceries
and meals delivered, cancelling all but the most critical medical appointments, and
cancelling travel plans. Some participants were able to arrange working from home, but
others (mostly healthcare workers) could not. Several also discussed wearing masks or
using gloves when they needed to go to a grocery store or pharmacy, but that other
shoppers did not always respect the recommended distance of 6 feet. Adapting physical
activity routines to adhere to social distancing could be challenging, since some participants
were accustomed to exercising in an indoor public space or with friends. Walking or running
outside, sometimes with a pet, was reported as a common alternative activity.
Impacts on treatment and access to care. As discussed above, some participants
reported stopping their DMARDs to lessen risk of infection, sometimes with the approval of
their rheumatologist. Others continued to take their medications as usual. Many reported
having medical appointments cancelled or switched to telephone or video consultations.
Infusions were still received as scheduled by most respondents. Availability of medications,
particularly HCQ, was a frequent concern, and some people reported being unable to obtain
refills from their pharmacy. Some attributed the shortage of HCQ to widespread
misinformation that this medication was proven to be an effective treatment for COVID-19.
One person reported concern over losing health care coverage (and as a result, access to
rheumatology care) due to the economic impact of COVID-19.

DISCUSSION
In this study, we report how patients with rheumatic and musculoskeletal diseases
throughout the US were impacted by the COVID-19 pandemic during the latter half of March
2020, the relatively early days of government-imposed isolation decrees. While none of the

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 respondents tested positive for COVID-19, many were already affected by it. A fifth reported
Accepted Article
postponed or canceled medical appointments and half reported new symptoms associated
with COVID-19. Our qualitative analysis of participant comments found four themes that
highlighted the impact of COVID-19 on mental health, perceptions that immunosuppressive
medications increase the risk of COVID-19 infection, uncertainty about whether arthritis
medications should be continued during a COVID-19 outbreak, and challenges in accessing
HCQ, which has drawn attention as a potential treatment for COVID-19.
Many respondents were not sure if they should stop their medications – additional
evidence-based guidance is needed in this area for patients and rheumatologists. Recent
editorials are recommending not modifying treatment unless symptoms of COVID-19
manifest (7, 27). It’s important for clinicians to be aware that some patients have stopped
taking their medications without recommendation from a health professional.
Respondents with higher disease activity were more likely to have
canceled/postponed appointments even after adjustment for several important confounders
like comorbidities and frequency of clinical appointments; it is unclear if this decision was
made by the participant or physician as less controlled disease often comes with greater
infection risk. Further study is needed to understand how lack of appointments for those
likely more in need of healthcare follow-up may impact patients’ health. Similarly, patients
reporting new symptoms were less likely to have been able to reach their rheumatology
clinic and were more likely to have had their physician change their medications; new
symptoms likely led patients to contact their physicians, leading to these findings.
Initial reports suggesting HCQ as an effective COVID-19 treatment (11, 28) have
come under increased scrutiny due to questionable methodologies and conclusions (29)(30).
The unconfirmed reports of HCQ as a viable treatment option for COVID-19, along with FDA
emergency authorization for use in hospitalized cases and the resulting shortage/refusal by
pharmacies to refill prescriptions, is a major issue for patients and the rheumatology
community (31, 32). While additional studies launch to examine this in greater detail, there is
need to raise awareness that HCQ is not yet a proven treatment or prophylactic for COVID-
19, and is a critical medication for many patients with rheumatic diseases including reducing

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 mortality and flares in patients with lupus (33). As one participant wrote, “I have taken
Accepted Article
Plaquenil for over 20 years and cannot get any now as it's being used as a possible
treatment for Covid19. […] I feel close to hopeless.”
Our study has some important limitations. With a single email as the basis of our
initial questionnaire, there was possible bias towards participants with greater
socioeconomic status, fewer symptoms, and lower disease activity. We accounted for this
difference by comparing respondents with non-respondents who had completed their
semiannual questionnaire. Future work should also examine the impact on more vulnerable
populations; i.e., those with lower SES, lower education, and/or from racial/ethnic minorities.
It is also likely that study participants who were diagnosed with COVID-19 or hospitalized
were not able to respond during this short time period. It is important to note that since this
cohort is composed entirely of patients with rheumatic diseases, our ability to differentiate
between results that are specific to the rheumatology community and those that are likely to
be the case throughout the population is limited. Lastly, comments were not required of
participants and our qualitative analysis was inherently biased toward those who found the
need to add additional detail on their experiences beyond our questionnaire.
In summary, we found that after two weeks many participants in the US with
rheumatic diseases already had important changes to their healthcare including canceling
appointments, which was independently linked to increased disease activity, and altering
medications without professional consultation or due to hydroxychloroquine shortage. There
were important impacts on mental health and continued uncertainty on how best to treat
these diseases and stay protected from COVID-19. Participants that met priority screening
criteria for SARS-CoV-2 testing were not tested, those that were tested did not meet
screening criteria, and none tested positive. We have planned follow-up questionnaires with
similar questions and the ability to modify as guidelines change and as participants report
testing positive for COVID-19. As evidence accumulates on the effectiveness of potential
COVID-19 treatments, many of which are used in treating rheumatic diseases, effort is
needed to ensure continued access to treatments that have already been proven effective
for rheumatic diseases.

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 ACKNOWLEDGMENTS
Accepted Article
We are grateful for the additional contributions by Rebecca Schumacher and Dr. Jacob
Clarke in the creation and implementation of the supplemental survey. None of this work
could be done without the contributions of our participants. In addition, we’d like to thank
several of our partners who took extra time with home childcare so we could finish this in a
timely manner.

AUTHOR CONTRIBUTIONS
All authors were involved in drafting the article or revising it critically for important intellectual
content, and all authors approved the final version to be published.
Study conception and design. Michaud, Wipfler, Shaw, Cornish, Ogdie, Katz.
Acquisition of data. Michaud, Wipfler, Shaw, Simon, Cornish.
Analysis and interpretation of data. Michaud, Wipfler, Shaw, Simon, Cornish, England,
Ogdie, Katz.

DISCLOSURES OF INTEREST

Dr. Michaud has received research grant from the Rheumatology Research Foundation. Ms.
Simon has been a consultant and a prior employee for BMS. Dr. England has received
research grants from the Rheumatology Research Foundation and NIGMS-supported Great
Plains IDeA-CTR. Dr. Ogdie has served as a consultant for Abbvie, Amgen, BMS, Celgene,
Corrona, Janssen, Lilly, Novartis, and Pfizer and has received grants to the University of
Pennsylvania from Pfizer and Novartis and to Forward Databank from Amgen; her husband
has received royalties from Novartis. No other disclosures relevant to this article were
reported.

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 FIGURE LEGENDS
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Figure 1. UpSet plot summarizing risk factors, symptoms, and testing experiences for
each participant who met screening criteria and/or attempted to get tested for SARS-
CoV-2. Each vertical line represents an individual participant, and each solid circle indicates
that the participant reported that new symptom or testing experience, or has the specified
risk factor. All participants who received a test tested negative. No respondents were in a
long-term care facility. “Exposure” indicates that the participant reported known exposure to
a COVID-19+ patient. Non-autoimmune diagnoses in this cohort are osteoarthritis and
fibromyalgia. RDCI=Rheumatic Disease Comorbidity Index.

Figure 2. Word cloud demonstrating the top themes and most frequently seen words
in respondents’ free response comments.

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 Table 1. Characteristics of participants with rheumatic diseases who were sent the
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COVID-19 supplemental questionnaire by response status.
Respondents Non-respondents
p-value
n=530 n=6,531
Demographics
Age, years 65.0 (10.9) 64.2 (12.5) 0.14
Female, % 84.4 84.2 0.92
Caucasian, % 93.5 90.2 0.02
Education, years 15.3 (1.9) 14.9 (2.2) <0.001
Married, % 71.1 67.1 0.06
Rural, % 19.8 22.5 0.15
History of smoking, % 36.8 41.0 0.06
BMI, kg/m2 28.1 (7.5) 29.0 (7.9) 0.01
Health insurance, % 98.9 99.0 0.79
US Geographic Distribution
Northeast, % 14.9 18.2
Midwest, % 30.8 32.3
<0.01
South, % 27.0 27.3
West, % 24.7 17.8
Semiannual Questionnaire
Online, % 85.8 55.5 <0.001
Paper, % 14.2 39.6 <0.001
Interview, % 0 4.9 <0.001
Days since completion 211 (92) 312 (195) <0.001
Patient Reported Outcome Measures
Pain, 0-10 3.1 (2.6) 3.9 (2.7) <0.001
Global severity, 0-10 3.0 (2.3) 3.7 (2.6) <0.001
Fatigue, 0-10 3.5 (2.9) 4.3 (3.0) <0.001
HAQ-II, 0-3 0.75 (0.61) 0.91 (0.67) <0.001

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 PAS-II, 0-3 2.8 (2.1) 3.5 (2.2) <0.001
Accepted Article
Primary Diagnosis
Rheumatoid arthritis, % 60.6 62.1
Osteoarthritis, % 11.1 12.8
0.34
Systemic lupus erythematosus, % 5.7 5.1
Other, % 22.6 20.0
Comorbid Conditions
Heart disease, % 22.1 22.9 0.65
Pulmonary disease, % 32.3 31.3 0.63
Diabetes, % 11.7 14.4 0.09
Renal disease, % 14.3 14.3 0.96
Liver disease, % 9.4 8.1 0.28
Medications
Conventional DMARD, % 52.6 46.9 0.01
Hydroxychloroquine, % 17.7 19.5 0.31
Biologic DMARD, % 39.0 37.1 0.37
IL-6 inhibitor, % 3.2 3.8 0.49
JAK inhibitor, % 7.0 5.1 0.07
Corticosteroid, % 18.1 18.6 0.79
NSAID, % 38.8 35.3 0.10

Values are mean (SD) unless otherwise indicated. BMI=Body Mass Index; HAQ-II = Health
Assessment Questionnaire-II; PAS-II = Patient Activity Scale-II; DMARD = Disease
Modifying Anti-Rheumatic Drug; IL-6 = Interleukin 6; JAK = Janus Kinase; NSAID =
NonSteroidal Anti-Inflammatory Drug

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 Table 2. Frequency of new symptoms.
Accepted Article
Symptom % Reporting
Fever 2.8
Cough 9.9
Sore throat 8.5
Shortness of breath 4.1
Tiredness (fatigue) 17.9
Muscle pain 11.6
Headache 13.0
Diarrhea, vomiting, or nausea 5.7
Chest pain 2.4
Pain or discomfort in upper abdomen 2.6
Pain or discomfort in lower abdomen 3.7
Loss/change in taste or smell 1.6
Nervousness (anxiety) 16.2
None of these 58.4

Participants were asked if they had experienced any new symptoms in the two weeks prior
to questionnaire completion. They selected from a provided list of symptoms related to
COVID-19.

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 Table 3. Reported changes in rheumatology care due to COVID-19 in the previous two
Accepted Article
weeks by prior disease activity and new symptoms.
Disease Activity New Symptoms
Change in Care (%) All Low High No Yes
n=471 n=290 n=128 n=257 n=214
Canceled or postponed
20.8 16.6 31.3 18.3 23.8
appointments
Switched to teleconference
10.6 7.9 14.8 10.9 10.3
appointments
Could not reach the
1.5 0.3 2.3 0 3.3
rheumatology office
Could not obtain my
4.2 2.4 7.0 4.3 4.2
medications
Physician changed the dose
2.5 2.1 3.9 1.6 3.7
of my medication(s)
Physician added or
2.5 1.4 4.7 0.4 5.1
removed medication(s)
I changed the dose of my
1.5 1.4 1.6 1.6 1.4
medication(s)
I added or removed
4.7 5.5 4.7 3.9 5.6
medication(s)

Other 7.4 7.9 7.0 6.6 8.4

No change 58.2 62.8 50.2 63.0 52.3

Values are the percentage of respondents who indicated each change in care option.
Statistically significant differences are shown in bold. Disease activity was defined by Patient
Activity Scale-II (PAS-II) with PAS-II≤3.7 as low and PAS-II>3.7 as high (34).

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 Table 4. Illustrative quotes for each major theme identified in respondents’ free
Accepted Article
response comments.

Theme: Emotions in response to COVID-19 related experiences

Subtheme Example quote

Anxiety/nervousness/worry/fear I am not normally a nervous person but thinking of

contracting this virus really scares me. I lived, barely,
through a H1N1 virus attack of my system 5 years ago but
this is a brand new virus and it really makes me nervous.

Desire to reduce risk of COVID- I am taking the threat of the virus seriously. I am self
19 isolating and having my groceries and medications
delivered.

Not worried about COVID-19 I am not worried about COVID19 and think the entire thing
is overblown.

Uncertainty I started with dry cough, nasal drip with no congestion at all.
Then shortness of breath two days later, low grade fever.
Headache, severe fatigue, muscle aches in arms and legs,
sore throat that comes and goes. Developed pneumonia
around 10 days in. While I tested negative for COVID-19
this is suspect because I never get sick and I haven't had
pneumonia since childhood (once). I work from home and
have no reason to have acquired pneumonia.

Frustration Unable to get name brand plaquenil due to covid 19 virus

usage. They don't seem to care about people that need the
drug for immune diseases

Sadness I miss my grandbabies. I watched one 3 days a week. I

cried myself to sleep missing them except for the last 3

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 days finally. My daughter sends pics. Working on video
Accepted Article chat situations.

Gratefulness I am so grateful that my family understands my health

issues and is staying away.

Hope I am hopeful we will escape this pestilence! and I hope

you will, too.

Wanting to help I flew back home from [State A] via [City 1] to [City 2],
[State B] on March 19th. I was exhausted for two days after
traveling during which time I had a lowgrade fever and a
headache. On the third day, I developed a bad cough with a
tightness in my chest that last for about a week. About the
sixth day, I called my primary doctor who recommended the
hot tea and normal things of comfort. I had started to feel a
bit better by then. I really didn't want to use testing supplies
when I was keeping myself in quarantine since I arrived
home from [State A] anyway.

Managing negative The stress of the pandemic has affected my immune

emotions/stress system. It's like a domino effect. I started with sores in my
mouth, then in my ear, which triggered the polychondritis,
which causes pain and pressure on the left side of my
head, which makes me fatigued more than usual, which
frustrates me and makes me depressed and triggers the
fibromyalgia and colitis. During isolation I must focus harder
to find those things I can do, instead of focusing on those I
can't. There is still joy to be found.

Theme: Perceptions of risk

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 Subtheme Example quote
Accepted Article
Increased risk due to age, I have put my [biologic] on hold, with the concurrence of my
chronic conditions, or potential rheumatologist. This is because my husband is a clinician
exposure to infected people who has likely exposure at his hospital; we live in [city],
where COVID-19 is present.

Increased risk due to taking I think my RA is more active over past 3-4 months since I
immunosuppressive decreased dose of Methotrexate from 7 to 6 tabs
medications 2.5mg/week in Dec2019. I am afraid to increase it due to
Covid 19.

Personal limit for I work in healthcare and I plan to go off my immuno-

acceptable/unacceptable risk suppressants if I am exposed. I plan to stay home if we get
a case of COVID-19 where I work. I go to work; I come
home. Don't go to the stores. We have 21 cases in my
county.

Theme: Protective measures to reduce COVID-19 infection

Subtheme Example quote

Self-isolation/social distancing Because [State] has not placed a quarantine or shelter-in-

place directive asking only for social distancing, I am still
taking my walks and trying to avoid all the people who
never came and now use the area for a touch of nature.
Some of the trails are narrow and it's difficult to get the
entire 6' off to the side. However in general, people are
respecting the 6' whenever possible. I continue to grocery
shop taking advantage of senior hours whenever possible,
wearing gloves, making my own alcohol wipes when
picking up items and cleaning the gloves before removing
them etc.

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 Cancelling medical I cancelled my cardiologist appointment because of covid-
Accepted Article
appointments that can be 19 fears. I'm debating on whether to keep my doctors
postponed appoints I have for next month.

Working from home I had to strongly advocate for myself at work to protect
myself. I have completely switched all work activities to
telemedicine and am working 100% from home with the
support of my division.

Cancelling travel plans I had plans to return to my home in [State] within the next
two weeks. I am not sure if I will as [State] has the highest
incidences of Covid-19. I live Upstate but there have been
many cases present there and testing is restricted.

Wearing masks or gloves when Shopping in the grocery store is very dangerous right now. I
in close contact with others wear a mask but people do not social distance. There are
no available wipes for carriages , very unhealthy using
payment devices when hand sanitizer is not available after
touching buttons for pin #...

Theme: Impacts on treatment and access to care

Subtheme Example quote

Stopping DMARDs to lessen Stopped taking Leflunomide - concerned about

risk of COVID-19 immunosuppressive effect

Medical appointments I do have an appointment with my primary care doctor for a

cancelled or switched to regular checkup next Monday and that has been switched
telephone or video from an in-person visit to a telephone appointment at their
consultations request. An online video appointment was also available
but we decided a phone call would be best.

Unavailability of medications I tried to get one extra refill on my hydroxychloroquine, after

(especially hydroxychloroquine) Trump lied about it being useful for cv-19, because I could

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 see that would cause a run on the drug. I was denied the
Accepted Article refill by my pharmacy provider, [pharmacy name], because
it was not yet due for refill. After reading that the AHIP was
urging companies to allow an extra refill for necessary
maintenance medications, I wrote an enote to [pharmacy
name] asking them to reconsider their denial and send me
the medication now so that I have it to assure continuity of
my treatment plan in the future. I have yet to hear back
from them.

Loss of health care coverage I may lose health care coverage within the next 30 days
due to economic changes during this crisis. This may
severely affect my rheumatology care.

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Accepted Article

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