Patient perspectives on telemedicine use in rheumatology during the COVID-19 pandemic: survey results from the COVID-19 Global Rheumatology Alliance.

OBJECTIVE: The COVID-19 pandemic resulted in rapid adoption of telemedicine in rheumatology. We described perspectives of patients with rheumatic diseases related to telemedicine use. METHODS: An anonymous online survey for people with rheumatic diseases was launched in January 2021. We collected data on reasons for telemedicine use, perceived benefits, disadvantages and obstacles of telemedicine, perceived telemedicine effectiveness for different clinical tasks, level of satisfaction with telemedicine use, and future preferences for telemedicine. We summarized results with descriptive statistics and identified themes in free text responses to describe perspectives of telemedicine qualitatively. RESULTS: We received 596 complete responses (85% female and 47% 41-60 years old). During the COVID-19 pandemic, 78% (467/596) of respondents used telemedicine, and 61% (283/467) of telemedicine users reported that telemedicine was as effective or more effective than an in-person visit. Younger participants and those in North America reported effectiveness and satisfaction with telemedicine at higher frequencies. Participants reported similar effectiveness to in-person visits for making medication changes and discussing disease symptoms or complications. CONCLUSION: Most respondents found telemedicine at least as effective as in-person visits. Participants found telemedicine to be effective for specific scenarios, such as making medication changes and discussion of disease activity. Telemedicine may continue to be of importance in the care of patients with rheumatic diseases post pandemic, but likely for specific subsets of patients for specific visit indications. Key Points • Most patients with rheumatic disease found telemedicine as effective as in-person visits, particularly for some indications.

Prolonged COVID-19 symptom duration in people with systemic autoimmune rheumatic diseases: results from the COVID-19 Global Rheumatology Alliance Vaccine Survey.

OBJECTIVE: We investigated prolonged COVID-19 symptom duration, defined as lasting 28 days or longer, among people with systemic autoimmune rheumatic diseases (SARDs). METHODS: We analysed data from the COVID-19 Global Rheumatology Alliance Vaccine Survey (2 April 2021-15 October 2021) to identify people with SARDs reporting test-confirmed COVID-19. Participants reported COVID-19 severity and symptom duration, sociodemographics and clinical characteristics. We reported the proportion experiencing prolonged symptom duration and investigated associations with baseline characteristics using logistic regression. RESULTS: We identified 441 respondents with SARDs and COVID-19 (mean age 48.2 years, 83.7% female, 39.5% rheumatoid arthritis). The median COVID-19 symptom duration was 15 days (IQR 7, 25). Overall, 107 (24.2%) respondents had prolonged symptom duration (≥28 days); 42/429 (9.8%) reported symptoms lasting ≥90 days. Factors associated with higher odds of prolonged symptom duration included: hospitalisation for COVID-19 vs not hospitalised and mild acute symptoms (age-adjusted OR (aOR) 6.49, 95% CI 3.03 to 14.1), comorbidity count (aOR 1.11 per comorbidity, 95% CI 1.02 to 1.21) and osteoarthritis (aOR 2.11, 95% CI 1.01 to 4.27). COVID-19 onset in 2021 vs June 2020 or earlier was associated with lower odds of prolonged symptom duration (aOR 0.42, 95% CI 0.21 to 0.81). CONCLUSION: Most people with SARDs had complete symptom resolution by day 15 after COVID-19 onset. However, about 1 in 4 experienced COVID-19 symptom duration 28 days or longer; 1 in 10 experienced symptoms 90 days or longer. Future studies are needed to investigate the possible relationships between immunomodulating medications, SARD type/flare, vaccine doses and novel viral variants with prolonged COVID-19 symptoms and other postacute sequelae of COVID-19 among people with SARDs.

Artistic and Health Professionals' Perceptions of Training Load Practices in Pre-Professional and Professional Ballet and Contemporary Dance: A Cross-Sectional Survey.

This study aimed to investigate the perceptions of training load practices of dance artistic and health professionals. Artistic staff and health professionals with experience in dance were invited to participate in a cross-sectional survey study relating to training load practices in pre-professional and professional, ballet and contemporary dance. The survey was developed from previous investigations in soccer and consisted of multiple-choice, Likert scale, and free-text responses. Responses to closed questions were reported by percentage and 95% confidence intervals (95% CI). Thematic analysis was performed by two independent assessors of free-text responses. There were six artistic staff and 18 health professional participants. Artistic staff were perceived to be "mostly/completely responsible" for planning training (artistic staff: 100%, 95% CI: 61%, 100%; health professionals: 94%, 95% CI: 76%, 100%), with health professionals "mostly/completely responsible" at times of injury (artistic staff: 83%, 95% CI: 41%, 99%; health professionals: 95% CI: 61%, 96%). Both groups reported using individual modification to manage training loads and recognized the benefits of rest. Artistic staff recognized the need to modify training when injured, in line with experience levels, workload, age, and general health. Both groups "agree/strongly agree" that monitoring would be or is useful (artistic staff: 83%, 95% CI: 41%, 99%; health professionals: 95% CI: 61%, 96%). This investigation provides insight into the perceptions of artistic staff and health professionals with experience in dance toward training practices. Artistic staff and health professionals need to work together and adapt monitoring practices to their context to support artistic staff in planning training. The findings guide the implementation of these interventions by understanding potential barriers to their effectiveness that may potentially reduce injury.

Baseline factors associated with self-reported disease flares following COVID-19 vaccination among adults with systemic rheumatic disease: results from the COVID-19 global rheumatology alliance vaccine survey.

OBJECTIVE: To examine the frequency of, and risk factors for, disease flare following COVID-19 vaccination in patients with systemic rheumatic disease (SRD). METHODS: An international study was conducted from 2 April to 16 August 2021, using an online survey of 5619 adults with SRD for adverse events following COVID-19 vaccination, including flares of disease requiring a change in treatment. We examined risk factors identified a priori based on published associations with SRD activity and SARS-CoV-2 severity, including demographics, SRD type, comorbidities, vaccine type, cessation of immunosuppressive medications around vaccination and history of reactions to non-COVID-19 vaccines, using multivariable logistic regression. RESULTS: Flares requiring a change in treatment following COVID-19 vaccination were reported by 4.9% of patients. Compared with rheumatoid arthritis, certain SRD, including systemic lupus erythematosus (OR 1.51, 95% CI 1.03, 2.20), psoriatic arthritis (OR 1.95, 95% CI 1.20, 3.18) and polymyalgia rheumatica (OR 1.94, 95% CI 1.08, 2.48) were associated with higher odds of flare, while idiopathic inflammatory myopathies were associated with lower odds for flare (OR 0.54, 95% CI 0.31-0.96). The Oxford-AstraZeneca vaccine was associated with higher odds of flare relative to the Pfizer-BioNTech vaccine (OR 1.44, 95% CI 1.07, 1.95), as were a prior reaction to a non-COVID-19 vaccine (OR 2.50, 95% CI 1.76, 3.54) and female sex (OR 2.71, 95% CI 1.55, 4.72). CONCLUSION: SRD flares requiring changes in treatment following COVID-19 vaccination were uncommon in this large international study. Several potential risk factors, as well as differences by disease type, warrant further examination in prospective cohorts.

SARS-CoV-2 breakthrough infections among vaccinated individuals with rheumatic disease: results from the COVID-19 Global Rheumatology Alliance provider registry.

OBJECTIVE: While COVID-19 vaccination prevents severe infections, poor immunogenicity in immunocompromised people threatens vaccine effectiveness. We analysed the clinical characteristics of patients with rheumatic disease who developed breakthrough COVID-19 after vaccination against SARS-CoV-2. METHODS: We included people partially or fully vaccinated against SARS-CoV-2 who developed COVID-19 between 5 January and 30 September 2021 and were reported to the Global Rheumatology Alliance registry. Breakthrough infections were defined as occurring ≥14 days after completion of the vaccination series, specifically 14 days after the second dose in a two-dose series or 14 days after a single-dose vaccine. We analysed patients' demographic and clinical characteristics and COVID-19 symptoms and outcomes. RESULTS: SARS-CoV-2 infection was reported in 197 partially or fully vaccinated people with rheumatic disease (mean age 54 years, 77% female, 56% white). The majority (n=140/197, 71%) received messenger RNA vaccines. Among the fully vaccinated (n=87), infection occurred a mean of 112 (±60) days after the second vaccine dose. Among those fully vaccinated and hospitalised (n=22, age range 36-83 years), nine had used B cell-depleting therapy (BCDT), with six as monotherapy, at the time of vaccination. Three were on mycophenolate. The majority (n=14/22, 64%) were not taking systemic glucocorticoids. Eight patients had pre-existing lung disease and five patients died. CONCLUSION: More than half of fully vaccinated individuals with breakthrough infections requiring hospitalisation were on BCDT or mycophenolate. Further risk mitigation strategies are likely needed to protect this selected high-risk population.

Early experience of COVID-19 vaccination in adults with systemic rheumatic diseases: results from the COVID-19 Global Rheumatology Alliance Vaccine Survey.

BACKGROUND: We describe the early experiences of adults with systemic rheumatic disease who received the COVID-19 vaccine. METHODS: From 2 April to 30 April 2021, we conducted an online, international survey of adults with systemic rheumatic disease who received COVID-19 vaccination. We collected patient-reported data on clinician communication, beliefs and intent about discontinuing disease-modifying antirheumatic drugs (DMARDs) around the time of vaccination, and patient-reported adverse events after vaccination. RESULTS: We analysed 2860 adults with systemic rheumatic diseases who received COVID-19 vaccination (mean age 55.3 years, 86.7% female, 86.3% white). Types of COVID-19 vaccines were Pfizer-BioNTech (53.2%), Oxford/AstraZeneca (22.6%), Moderna (21.3%), Janssen/Johnson & Johnson (1.7%) and others (1.2%). The most common rheumatic disease was rheumatoid arthritis (42.3%), and 81.2% of respondents were on a DMARD. The majority (81.9%) reported communicating with clinicians about vaccination. Most (66.9%) were willing to temporarily discontinue DMARDs to improve vaccine efficacy, although many (44.3%) were concerned about rheumatic disease flares. After vaccination, the most reported patient-reported adverse events were fatigue/somnolence (33.4%), headache (27.7%), muscle/joint pains (22.8%) and fever/chills (19.9%). Rheumatic disease flares that required medication changes occurred in 4.6%. CONCLUSION: Among adults with systemic rheumatic disease who received COVID-19 vaccination, patient-reported adverse events were typical of those reported in the general population. Most patients were willing to temporarily discontinue DMARDs to improve vaccine efficacy. The relatively low frequency of rheumatic disease flare requiring medications was reassuring.

Immediate effect of the COVID-19 pandemic on patient health, health-care use, and behaviours: results from an international survey of people with rheumatic diseases.

BACKGROUND: The impact and consequences of the COVID-19 pandemic on people with rheumatic disease are unclear. We developed the COVID-19 Global Rheumatology Alliance Patient Experience Survey to assess the effects of the COVID-19 pandemic on people with rheumatic disease worldwide. METHODS: Survey questions were developed by key stakeholder groups and disseminated worldwide through social media, websites, and patient support organisations. Questions included demographics, rheumatic disease diagnosis, COVID-19 diagnosis, adoption of protective behaviours to mitigate COVID-19 exposure, medication access and changes, health-care access and communication with rheumatologists, and changes in employment or schooling. Adults age 18 years and older with inflammatory or autoimmune rheumatic diseases were eligible for inclusion. We included participants with and without a COVID-19 diagnosis. We excluded participants reporting only non-inflammatory rheumatic diseases such as fibromyalgia or osteoarthritis. FINDINGS: 12 117 responses to the survey were received between April 3 and May 8, 2020, and of these, 10 407 respondents had included appropriate age data. We included complete responses from 9300 adults with rheumatic disease (mean age 46·1 years; 8375 [90·1%] women, 893 [9·6%] men, and 32 [0·3%] participants who identified as non-binary). 6273 (67·5%) of respondents identified as White, 1565 (16·8%) as Latin American, 198 (2·1%) as Black, 190 (2·0%) as Asian, and 42 (0·5%) as Native American or Aboriginal or First Nation. The most common rheumatic disease diagnoses included rheumatoid arthritis (3636 [39·1%] of 9300), systemic lupus erythematosus (2882 [31·0%]), and Sjögren's syndrome (1290 [13·9%]). Most respondents (6921 [82·0%] of 8441) continued their antirheumatic medications as prescribed. Almost all (9266 [99·7%] of 9297) respondents adopted protective behaviours to limit SARS-CoV-2 exposure. A change in employment status occurred in 2524 (27·1%) of 9300) of respondents, with a 13·6% decrease in the number in full-time employment (from 4066 to 3514). INTERPRETATION: People with rheumatic disease maintained therapy and followed public health advice to mitigate the risks of COVID-19. Substantial employment status changes occurred, with potential implications for health-care access, medication affordability, mental health, and rheumatic disease activity. FUNDING: American College of Rheumatology.

Developing Treatment Guidelines During a Pandemic Health Crisis: Lessons Learned From COVID-19.

The development of the National Institutes of Health (NIH) COVID-19 Treatment Guidelines began in March 2020 in response to a request from the White House Coronavirus Task Force. Within 4 days of the request, the NIH COVID-19 Treatment Guidelines Panel was established and the first meeting took place (virtually-as did subsequent meetings). The Panel comprises 57 individuals representing 6 governmental agencies, 11 professional societies, and 33 medical centers, plus 2 community members, who have worked together to create and frequently update the guidelines on the basis of evidence from the most recent clinical studies available. The initial version of the guidelines was completed within 2 weeks and posted online on 21 April 2020. Initially, sparse evidence was available to guide COVID-19 treatment recommendations. However, treatment data rapidly accrued based on results from clinical studies that used various study designs and evaluated different therapeutic agents and approaches. Data have continued to evolve at a rapid pace, leading to 24 revisions and updates of the guidelines in the first year. This process has provided important lessons for responding to an unprecedented public health emergency: Providers and stakeholders are eager to access credible, current treatment guidelines; governmental agencies, professional societies, and health care leaders can work together effectively and expeditiously; panelists from various disciplines, including biostatistics, are important for quickly developing well-informed recommendations; well-powered randomized clinical trials continue to provide the most compelling evidence to guide treatment recommendations; treatment recommendations need to be developed in a confidential setting free from external pressures; development of a user-friendly, web-based format for communicating with health care providers requires substantial administrative support; and frequent updates are necessary as clinical evidence rapidly emerges.

Wellness Monitoring for Professional Ballet Dancers - A Pilot Study.

Self-report wellness measures are used extensively in elite sport as valid indicators of the adaptive responses to training and performance of an athlete. Wellness parameters such as quality and quantity of sleep, muscle soreness, fatigue, and stress are monitored in professional sport via Athlete Management Systems (AMS) and self-report monitoring applications (App). However, the use of a monitoring App specifically for professional classical ballet dancers has not been tested. This study piloted a self-report App to measure wellness constructs in a professional ballet company. Three male and two female dancers volunteered to take part in the mixed-method study, entering daily wellness data, frequency of work-related activities, and injury status into an App on their smart phones. Via a focus group interview session, perceptions of wellness and experiences using the App were found to be favorable, with dancers reporting that the App enhanced awareness of their well-being. To further develop monitoring tools in professional ballet companies, it is recommended that the App be made specific to the wellness needs of dancers.

Association of Race and Ethnicity With COVID-19 Outcomes in Rheumatic Disease: Data From the COVID-19 Global Rheumatology Alliance Physician Registry.

OBJECTIVE: Racial/ethnic minorities experience more severe outcomes of coronavirus disease 2019 (COVID-19) in the general US population. This study was undertaken to examine the association between race/ethnicity and COVID-19 hospitalization, ventilation status, and mortality in people with rheumatic disease. METHODS: US patients with rheumatic disease and COVID-19 were entered into the COVID-19 Global Rheumatology Alliance physician registry between March 24, 2020 and August 26, 2020 were included. Race/ethnicity was defined as White, African American, Latinx, Asian, or other/mixed race. Outcome measures included hospitalization, requirement for ventilatory support, and death. Multivariable regression models were used to estimate odds ratios (ORs) and 95% confidence intervals (95% CIs) adjusted for age, sex, smoking status, rheumatic disease diagnosis, comorbidities, medication use prior to infection, and rheumatic disease activity. RESULTS: A total of 1,324 patients were included, of whom 36% were hospitalized and 6% died; 26% of hospitalized patients required mechanical ventilation. In multivariable models, African American patients (OR 2.74 [95% CI 1.90-3.95]), Latinx patients (OR 1.71 [95% CI 1.18-2.49]), and Asian patients (OR 2.69 [95% CI 1.16-6.24]) had higher odds of hospitalization compared to White patients. Latinx patients also had 3-fold increased odds of requiring ventilatory support (OR 3.25 [95% CI 1.75-6.05]). No differences in mortality based on race/ethnicity were found, though power to detect associations may have been limited. CONCLUSION: Similar to findings in the general US population, racial/ethnic minorities with rheumatic disease and COVID-19 had increased odds of hospitalization and ventilatory support. These results illustrate significant health disparities related to COVID-19 in people with rheumatic diseases. The rheumatology community should proactively address the needs of patients currently experiencing inequitable health outcomes during the pandemic.

Self-Reported Wellness in Training and Performance: A Comparison of Professional Ballet Dancers and Professional Athletes.

OBJECTIVE: In high-performance sport, the use of self-report measures is expanding. The exploration of wellness states in response to training and performance requires further investigation for professional ballet dancers and athletes. This study therefore aimed to: compare wellness scores between professional ballet dancers and athletes in training and performance; report frequency of self-reported modified participation during training and performance; and report frequency of self-reported inability to participate due to pain and illness in dancers and athletes. METHODS: Fourteen professional ballet dancers (mean 26 yrs, SD 2.6) and 14 sex- and age-matched professional athletes (mean 27.7 yrs, SD 2.9) recorded daily wellness (fatigue, stress, sleep quality and quantity), participation (full, rest, modified, or unable to participate) and activity (performance, training) into a wellness application on their smart phone over a 4-month period. Mixed factorial ANOVAs were conducted to assess the interaction between group (ballet dancers and athletes) and activity (performance and training) on the dependent variables (stress, fatigue, sleep quality, and sleep quantity). RESULTS: Stress and fatigue levels were higher for both dancers and athletes during performance compared to training periods. Dancers recorded lower sleep quantity than athletes, with no difference in sleep quality. Modified participation appears more common in dancers compared to athletes. Dancers and athletes were rarely unable to train or perform/compete over the 4 months. CONCLUSION: Self-reported wellness scores appear sensitive to activity type and can provide valuable information to guide intervention and recovery strategies. Further research on the impact of poor wellness on performance, illness, and injury in professional ballet is warranted.

Acute respiratory viral adverse events during use of antirheumatic disease therapies: A scoping review.

INTRODUCTION: COVID-19 is an acute respiratory viral infection that threatens people worldwide, including people with rheumatic disease, although it remains unclear to what extent various antirheumatic disease therapies increase susceptibility to complications of viral respiratory infections. OBJECTIVE: The present study undertakes a scoping review of available evidence regarding the frequency and severity of acute respiratory viral adverse events related to antirheumatic disease therapies. METHODS: Online databases were used to identify, since database inception, studies reporting primary data on acute respiratory viral infections in patients utilizing antirheumatic disease therapies. Independent reviewer pairs charted data from eligible studies using a standardized data abstraction tool. RESULTS: A total of 180 studies were eligible for qualitative analysis. While acknowledging that the extant literature has a lack of specificity in reporting of acute viral infections or complications thereof, the data suggest that use of glucocorticoids, JAK inhibitors (especially high-dose), TNF inhibitors, and anti-IL-17 agents may be associated with an increased frequency of respiratory viral events. Available data suggest no increased frequency or risk of respiratory viral events with NSAIDs, hydroxychloroquine, sulfasalazine, methotrexate, azathioprine, mycophenolate mofetil, cyclophosphamide, or apremilast. One large cohort study demonstrated an association with leflunomide use and increased risk of acute viral respiratory events compared to non-use. CONCLUSION: This scoping review identified that some medication classes may confer increased risk of acute respiratory viral infections. However, definitive data are lacking and future studies should address this knowledge gap.

Swinging the pendulum: lessons learned from public discourse concerning hydroxychloroquine and COVID-19.

INTRODUCTION: Several months into the COVID-19 pandemic, safe and effective treatments against this global health disaster have yet to be identified. Clinical research trials around the world are underway testing a wide array of possible medications. In particular, the off-label use of hydroxychloroquine for COVID-19 prophylaxis and treatment has created many unprecedented challenges for the scientific community and the public. AREAS COVERED: We critically assessed major events from February - May 2020 that contributed to widespread use of hydroxychloroquine for the treatment and prophylaxis of COVID-19. We aimed to explore how opinions toward hydroxychloroquine may shift from early enthusiasm (based on in vitro and preliminary clinical data) to the hope for a miracle cure (through communication and promotion of questionable results) and, finally, to a rise of skepticism as more in-depth analyses are emerging. EXPERT OPINION: Mindful and rigorous acquisition of data, as well as its interpretation, are essential to an effective pandemic response. The rapid and premature promotion of results has had major implications for global crisis management, even creating distrust among the public. It is crucial for the medical and scientific community to incorporate the lessons learned from this situation.

Perceptions of Pain, Injury, and Transition-Retirement: The Experiences of Professional Dancers.

Dancers are often referred to as "athletes of the arts," and like other athletes they undergo years of hard physical training in pursuit of excellence. Previous research has indicated that dancers develop high pain thresholds and push past their pain barriers. This has potential implications for their health and wellbeing in both their professional careers and life after dance. Therefore, the purpose of this pilot study was to explore the perceptions and experiences of injury, pain, and retirement among professional dancers. Twenty professional dancers, 10 from the United Kingdom and Canada, hereafter referred to as "international," and 10 from Australia participated in a semi-structured interview reflecting on their experiences of the aforementioned issues. The following themes were identified: 1. the injured dancer: the reality; 2. dancers' perceptions and experiences of pain; 3. the transition leading to retirement; and 4. life after dance: attributes facilitating career change. Results from both Australian and international dancers revealed that they withstand, manage, and dance through persistent levels of pain and injury. All participants reported that they were highly motivated and dedicated to their dance careers; however, the majority of Australian dancers were not adequately prepared for, or aware of, the challenges of transition into their post-professional dance lives when compared to the international dancers. Dancer transition organizations currently operate in America, the Netherlands, Canada, and the United Kingdom and serve as valuable models that could be replicated in Australia. The current study recommends increased awareness of pain management and injury prevention strategies for dancers and further supports the rationale for development and implementation of transition models for dancers in Australia and elsewhere.