Katja Reuter1, Atul Deodhar2, Souzi Makri3, Michael Zimmer4, Francis Berenbaum5, Elena Nikiphorou6. 1. European League Against Rheumatism (EULAR), Zurich, Switzerland. 2. Division of Arthritis and Rheumatic Diseases, Oregon Health & Science University, Portland, Oregon, United States. 3. European League Against Rheumatism (EULAR), People with Arthritis and Rheumatism (PARE), Zurich, Switzerland; Cyprus League Against Rheumatism, Nicosia, Cyprus; EUPATI fellow. 4. Department of Computer Science, Marquette University, Milwaukee, WI, United States. 5. Department of Rheumatology, Sorbonne Université, INSERM CRSA, AP-HP Hospital Saint Antoine, Paris, France. 6. Centre for Rheumatic Diseases, King's College London, London, United Kingdom.
Abstract
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.
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.
Authors: Philip C Robinson; Pedro M Machado; Nigil Haroon; Lianne S Gensler; John D Reveille; Vanessa Taieb; Thomas Vaux; Carmen Fleurinck; Marga Oortgiesen; Natasha de Peyrecave; Atul Deodhar Journal: ACR Open Rheumatol Date: 2022-07-14