Department of Public Health & Preventive Medicine, SUNY Upstate Medical University, Syracuse, New York, USA.
Division of Arthritis and Rheumatic Diseases, Oregon Health & Science University, Portland, OR, USA.
Rheumatology (Oxford). 2021 Oct 9;60(SI):SI77-SI84. doi: 10.1093/rheumatology/keab174.
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 1 March and 12 July 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, RA, PsA, lupus/SLE 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: (i) lack of understanding of SARS-CoV-2/COVID-19; (ii) critical changes in health behaviour; (iii) challenges in healthcare practice and communication with healthcare professionals; (iv) difficulties with access to medical care; (v) negative impact on physical and mental health, coping strategies; (vi) issues around work participation; (vii) negative effects of the media; and (viii) 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.
目的:在 COVID-19 大流行期间,大量的交流是通过社交媒体在线进行的。本研究旨在利用基于 Twitter 的患者生成健康数据(PGHD),从患者角度提供有关 COVID-19 大流行如何影响风湿和肌肉骨骼疾病(RMD)患者的信息。
方法:从 2020 年 3 月 1 日至 7 月 12 日,提取了在英语中通过 Twitter 发布的 RMD 患者的便利样本,并使用主题分析进行了检查。纳入的 Twitter 消息提到了与 COVID-19(或 SARS-CoV-2)和选定的 RMD 相关的关键词和标签。监测的 RMD 包括炎症驱动(关节)疾病(强直性脊柱炎、类风湿关节炎、银屑病关节炎、狼疮/系统性红斑狼疮和痛风)。
结果:分析包括来自几个国家的 375 名 RMD 患者的 569 条推文。关于 COVID-19 大流行对 RMD 患者的影响,出现了 8 个主题:(i)对 SARS-CoV-2/COVID-19 的认识不足;(ii)健康行为的重大变化;(iii)医疗保健实践和与医疗保健专业人员沟通方面的挑战;(iv)获得医疗保健的困难;(v)对身心健康的负面影响、应对策略;(vi)工作参与方面的问题;(vii)媒体的负面影响;(viii)提高认识。
结论:研究结果表明,Twitter 是一个实时数据来源,可以了解 COVID-19 大流行对 RMD 患者的影响。该平台提供了潜在关键健康行为变化的“早期信号”。未来的流行病可能会受益于实时使用基于 Twitter 的 PGHD 来确定新出现的健康需求,促进沟通并为临床实践决策提供信息。
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