Capturing Patient‐Reported Outcomes During the COVID‐19 Pandemic: Development of the COVID‐19 Global Rheumatology Alliance Patient Experience Survey

Dillingham, Sarah; Hausmann, J.; Robinson, Philip C; Yazdany, Jinoos; Grainger, Rebecca; Wallace, Z.; Bhana, Suleman; Sirotich, Emily; Liew, Jean W; Hausmann, Jonathan S; Machado, Pedro; Costello, Wendy

doi:10.1002/acr.24257

Cited by 28 publications

(46 citation statements)

References 10 publications

(13 reference statements)

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“…Other authors have focused on long-term adverse outcomes from inactivity and recommend special attention to restoring mobility [13]. Newly established registries designed to track COVID-19 outcomes from the patients' point of view will provide longitudinal data on rheumatic disease symptoms and impact on mental health [16].…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2020

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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.

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Section: Discussionmentioning

confidence: 99%

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

et al. 2020

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“…The data from the COVID-19 Global Rheumatology Alliance significantly contributed to the scientific discourse on RMDs and COVID-19. As a result, first major publications were published [13,14].…”

Section: Discussionmentioning

confidence: 99%

#Covid4Rheum: an analytical twitter study in the time of the COVID-19 pandemic

2020

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Social media services, such as Twitter, offer great potential for a better understanding of rheumatic and musculoskeletal disorders (RMDs) and improved care in the field of rheumatology. This study examined the content and stakeholders associated with the Twitter hashtag #Covid4Rheum during the COVID-19 pandemic. The content analysis shows that Twitter connects stakeholders of the rheumatology community on a global level, reaching millions of users. Specifically, the use of hashtags on Twitter assists digital crowdsourcing projects and scientific collaboration, as exemplified by the COVID-19 Global Rheumatology Alliance registry. Moreover, Twitter facilitates the distribution of scientific content, such as guidelines or publications. Finally, digital data mining enables the identification of hot topics within the field of rheumatology.

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“…By April 16, 2020, it had collected responses from 9541 patients. Information promises to become a rich source of understanding of current aspects of this pandemic in rheumatology [26]. Another report of this alliance describes the outcome of 600 patients collected from 40 countries, where 46% required hospitalization and 9% died.…”

Section: How Does Covid-19 Affect Rheumatology Practice?mentioning

confidence: 99%