COVID-19 pandemic impact on people with rheumatic and musculoskeletal diseases: Insights from patient-generated health data on social media

OBJECTIVES: During the COVID-19 pandemic, much communication occurred online, through social media. This study aimed to provide patient perspective data on how the COVID-19 pandemic impacted people with rheumatic and musculoskeletal diseases (RMDs), using Twitter-based patient-generated health data (PGHD). METHODS: A convenience sample of Twitter messages in English posted by people with RMDs was extracted between March 1, and July 12, 2020 and examined using thematic analysis. Included were Twitter messages that mentioned keywords and hashtags related to both COVID-19 (or SARS-CoV-2) and select RMDs. The RMDs monitored included inflammatory-driven (joint) conditions (Ankylosing Spondylitis, Rheumatoid Arthritis, Psoriatic Arthritis, Lupus/Systemic Lupus Erythematosus, and Gout). RESULTS: The analysis included 569 tweets by 375 Twitter users with RMDs across several countries. Eight themes emerged regarding the impact of the COVID-19 pandemic on people with RMDs: (1) lack of understanding of SARS-CoV-2/COVID-19; (2) critical changes in health behaviour; (3) challenges in healthcare practice and communication with healthcare professionals; (4) difficulties with access to medical care; (5) negative impact on physical and mental health, coping strategies; (6) issues around work participation, (7) negative effects of the media; (8) awareness-raising. CONCLUSION: The findings show that Twitter serves as a real-time data source to understand the impact of the COVID-19 pandemic on people with RMDs. The platform provided “early signals” of potentially critical health behaviour changes. Future epidemics might benefit from the real-time use of Twitter-based PGHD to identify emerging health needs, facilitate communication, and inform clinical practice decisions.