Psychological Stress Reported at the Start of the COVID-19 Pandemic and Subsequent Stress and Successful Coping in Patients With Rheumatic Diseases: A Longitudinal Analysis.

OBJECTIVE: In a cohort assembled during the height of mortality-associated coronavirus disease 2019 (COVID-19) in New York City, the objectives of this qualitative-quantitative mixed-methods study were to assess COVID-related stress at enrollment with subsequent stress and clinical and behavioral characteristics associated with successful coping during longitudinal follow-up. METHODS: Patients with rheumatologist-diagnosed rheumatic disease taking immunosuppressive medications were interviewed in April 2020 and were asked open-ended questions about the impact of COVID-19 on psychological well-being. Stress-related responses were grouped into categories. Patients were interviewed again in January-March 2021 and asked about interval and current disease status and how well they believed they coped. Patients also completed the 29-item Patient-Reported Outcomes Measurement Information System (PROMIS-29) measuring physical and emotional health during both interviews. RESULTS: Ninety-six patients had follow-ups; 83% were women, and mean age was 50 years. Patients who reported stress at enrollment had improved PROMIS-29 scores, particularly for the anxiety subscale. At the follow-up, patients reported persistent and new stresses as well as numerous self-identified coping strategies. Overall coping was rated as very well (30%), well (48%), and neutral-fair-poor (22%). Based on ordinal logistic regression, variables associated with worse overall coping were worse enrollment-to-follow-up PROMIS-29 anxiety (odds ratio [OR], 4.4; confidence interval [CI], 1.1-17.3; p = 0.03), not reporting excellent/very good disease status at follow-up (OR, 2.7; CI, 1.1-6.5; p = 0.03), pandemic-related persistent stress (OR, 5.7; CI, 1.6-20.1; p = 0.007), and pandemic-related adverse long-lasting effects on employment (OR, 6.1; CI, 1.9-20.0; p = 0.003) and health (OR, 3.0; CI, 1.0-9.0; p = 0.05). CONCLUSIONS: Our study reflects the evolving nature of COVID-related psychological stress and coping, with most patients reporting they coped well. For those not coping well, multidisciplinary health care providers are needed to address long-lasting pandemic-associated adverse consequences.

Perceived Risk of SARS-CoV-2 at the Start of the COVID-19 Pandemic and Subsequent Vaccination Attitudes in Patients With Rheumatic Diseases: A Longitudinal Analysis.

OBJECTIVE: In a cohort assembled at the start of the pandemic in New York City, objectives of this longitudinal study were to ascertain whether perspectives about SARS-CoV-2 risks obtained at enrollment were associated with clinical course and vaccination intent obtained at follow-up with the advent of vaccines. METHODS: Patients with diverse rheumatologist-diagnosed diseases taking immunosuppressive medications were interviewed in April 2020 during the height of mortality-associated COVID-19 in New York City and were asked whether they perceived greater infection risk due to rheumatic diseases/medications. Patients were interviewed again when vaccines became available and asked about flares, medication changes, disease activity during the pandemic, and current disease status. They also reported SARS-CoV-2 testing, vaccination intent, and vaccination concerns. RESULTS: Ninety-six patients had follow-ups (January-March 2021; 83% women; mean age, 50 years). At enrollment, 53%/57% perceived much greater infection risk from autoimmune disease/medications; at follow-up, patients reported flares (63%), greater/unpredictable disease activity (40%), and more medications (44%). Current disease was excellent/very good/good (73%) and fair/poor (27%). Enrollment perspectives were not associated with follow-up status. Seventy percent had SARS-CoV-2 testing. Twenty-three percent would not/were hesitant about vaccination. In multivariable analysis, younger age, concern about effects on rheumatic disease, and distrusting vaccine information were main reasons for not intending/hesitancy to be vaccinated. Eighty-six percent did not report rheumatologists as sources of vaccine information. CONCLUSIONS: Clinical status at follow-up and vaccination intent were not associated with perceived SARS-CoV-2 risk at the start of the pandemic. Concern about vaccine effects on rheumatic disease and distrust in vaccine information deterred patients from vaccination.

Coping Mechanisms Mitigate Psychological Stress in Patients With Rheumatologic Diseases During the COVID-19 Pandemic.

BACKGROUND: Coping with stress is part of self-managing systemic rheumatic diseases. Our objective was to assess stress and coping during the coronavirus disease 2019 (COVID-19) pandemic. METHODS: During the pandemic in New York City, patients taking disease-modifying antirheumatic drugs answered open-ended questions about the pandemic's effects on daily life and their rheumatic condition. Themes of stress and coping were discerned from volunteered responses. Patients also completed the standard Generalized Anxiety Disorder (GAD-7) scale/PROMIS Anxiety surveys. Anxiety scores were independent variables in multivariable analyses with stress and coping themes as combined dependent variables. RESULTS: Of the 112 patients interviewed (86% women; mean age, 50 years), 72 volunteered COVID-19-related stress on their rheumatic condition, home, work, and finances. Patients volunteering stress were younger, had disease longer, were taking more than 1 medication, had worse GAD-7 scores and a positive anxiety screen, and had worse PROMIS scores that were significantly worse than population norms (all comparisons, p ≤ 0.01; all variables remained associated in multivariable analyses). Fourty-one patients volunteered coping mechanisms including support from others, engaging in activities, and resilience already establish in dealing with rheumatic diseases. Of these, 18 volunteered both coping and stress and 23 volunteered coping and no stress. Patients in the latter (coping-only) group were more likely to be older, taking only 1 medication, and had better GAD-7 and PROMIS scores (all comparisons, p ≤ 0.02). In multivariable analysis, older age (p = 0.02) and lower GAD-7 (p = 0.03) or PROMIS scores (p = 0.03) remained associated. CONCLUSIONS: Patients reported stress and coping due to the COVID-19 pandemic. Analyses with standard anxiety measures demonstrated lower anxiety in patients who volunteered coping mechanisms.

Variables Associated With Perceived Risk of Contracting SARS-CoV-2 Infection During the COVID-19 Pandemic Among Patients With Systemic Rheumatic Diseases.

OBJECTIVE: The aim of this study was to assess patients' perceived risk of contracting SARS-CoV-2 at the peak of the pandemic in NYC in terms of their systemic rheumatic disease and medications. METHODS: With the approval of their rheumatologists, patients were interviewed by telephone and were asked about their perceived risk of contracting SARS-CoV-2 considering their rheumatic condition and whether medications increased this risk. Patients also completed surveys assessing beliefs about medication and multidimensions of physical/mental well-being. Information about current medications and rheumatologist-initiated changes in medications during the pandemic were reported by patients and verified from medical records. RESULTS: One hundred twelve patients (86% women; mean age, 50 years; 81% White, 15% Latino) with diverse diagnoses were enrolled. Fifty-four percent thought they were at "very much greater risk" of COVID-19 because of their rheumatic condition, and 57% thought medications "definitely" put them at greater risk. In multivariable analysis, the perception of "very much greater risk" was associated with greater belief that rheumatic disease medications were necessary, worse physical function, chronic pulmonary comorbidity, and more anxiety. In a separate model, the perception that medications "definitely" caused greater risk was associated with White race, not taking hydroxychloroquine, rheumatologists initiating change in medications, more anxiety, and taking biologics and corticosteroids. CONCLUSIONS: Patients' perceived increased risk of contracting SARS-CoV-2 was associated with beliefs about their rheumatic disease, medications, comorbidity, and anxiety. Clinicians should be aware of patients' perceptions and foster self-management practices that will alleviate anxiety, minimize exposure to the virus, and optimize systemic rheumatic disease outcomes.

Modifications in Systemic Rheumatic Disease Medications: Patients' Perspectives During the Height of the COVID-19 Pandemic in New York City.

OBJECTIVE: Concerns about severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection may have led to changes or discontinuation of immunosuppressive medications among patients with systemic rheumatic disease. Our goal was to assess patients' perspectives regarding medication modifications and deviations from planned uses during the height of the pandemic. METHODS: Adult patients of 13 rheumatologists at an academic center with physician-diagnosed rheumatic disease and prescribed disease-modifying medications were interviewed by telephone and asked open-ended questions about the impact of SARS-CoV-2 on their medications. Responses were analyzed using content and thematic analyses to generate categories that described patterns of medication modification. RESULTS: A total of 112 patients (mean age 50 years, 86% women, 34% non-White race or Latino ethnicity) with diverse diagnoses (30% lupus, 26% rheumatoid arthritis, 44% other) who were taking various medications were enrolled. Patients reported clinically relevant issues that were iteratively reviewed to generate unique categories of medication modification: medications and increased or decreased risk of SARS-CoV-2 infection; role of hydroxychloroquine; maintaining medication status quo; role of glucocorticoids; increasing or decreasing existing medications in relation to clinical disease activity; postponing infusions; and medication plan if infected by SARS-CoV-2. Some modifications were suboptimal for disease control but were made to mitigate infection risk and to minimize potential harm when patients were unable to obtain laboratory tests and physical examinations due to cessation of in-person office visits. CONCLUSION: During the height of the pandemic, substantial medication modifications were made that, in some cases, were temporizing measures and deviations from planned regimens. Future studies will assess short- and long-term sequelae of these medication modifications.

Impact of COVID-19 on vulnerable patients with rheumatic disease: results of a worldwide survey.

OBJECTIVE: There is emerging evidence that COVID-19 disproportionately affects people from racial/ethnic minority and low socioeconomic status (SES) groups. Many physicians across the globe are changing practice patterns in response to the COVID-19 pandemic. We sought to examine the practice changes among rheumatologists and what they perceive the impact to be on their most vulnerable patients. METHODS: We administered an online survey to a convenience sample of rheumatologists worldwide during the initial height of the pandemic (between 8 April and 4 May 2020) via social media and group emails. We surveyed rheumatologists about their opinions regarding patients from low SES and racial/ethnic minority groups in the context of the COVID-19 pandemic. Mainly, what their specific concerns were, including the challenges of medication access; and about specific social factors (health literacy, poverty, food insecurity, access to telehealth video) that may be complicating the management of rheumatologic conditions during this time. RESULTS: 548 rheumatologists responded from 64 countries and shared concerns of food insecurity, low health literacy, poverty and factors that preclude social distancing such as working and dense housing conditions among their patients. Although 82% of rheumatologists had switched to telehealth video, 17% of respondents estimated that about a quarter of their patients did not have access to telehealth video, especially those from below the poverty line. The majority of respondents believed these vulnerable patients, from racial/ethnic minorities and from low SES groups, would do worse, in terms of morbidity and mortality, during the pandemic. CONCLUSION: In this sample of rheumatologists from 64 countries, there is a clear shift in practice to telehealth video consultations and widespread concern for socially and economically vulnerable patients with rheumatic disease.

Rheumatic Disease-Related Symptoms During the Height of the COVID-19 Pandemic.

BACKGROUND: Systemic rheumatic diseases are characterized by diverse symptoms that are exacerbated by stressors. QUESTIONS/PURPOSES: Our goal was to identify COVID-19-related stressors that patients associated with worsening rheumatic disease symptoms. METHODS: With approval of their rheumatologists, patients at an academic medical center were interviewed with open-ended questions about the impact of COVID-19 on daily life. Responses were analyzed with qualitative methods using grounded theory and a comparative analytic approach to generate categories of stressors. RESULTS: Of 112 patients enrolled (mean age 50 years, 86% women, 34% non-white or Latino, 30% with lupus, 26% with rheumatoid arthritis), 2 patients had SARS-CoV-2 infection. Patients reported that coping with challenges due to the pandemic both directly and indirectly worsened their rheumatic disease symptoms. Categories associated with direct effects were increased fatigue (i.e., from multitasking, physical work, and taking precautions to avoid infection) and worsening musculoskeletal and cognitive function. Categories associated with indirect effects were psychological worry (i.e., about contracting SARS-COV-2, altering medications, impact on family, and impact on job and finances) and psychological stress (i.e., at work, at home, from non-routine family responsibilities, about uncertainty related to SARS-CoV-2, and from the media). Patients often reported several effects coalesced in causing more rheumatic disease symptoms. CONCLUSION: Coping with the COVID-19 pandemic was associated with rheumatic disease-related physical and psychological effects, even among patients not infected with SARS-CoV-2. According to patients, these effects adversely impacted their rheumatic diseases. Clinicians will need to ascertain the long-term sequelae of these effects and determine what therapeutic and psychological interventions are indicated.