ArticleLupus science & medicine2022
Health information use by patients with systemic lupus erythematosus (SLE) pre and during the COVID-19 pandemic.
Article in Lupus science & medicine, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed, 10 citations in OpenAlex.
- AI-Driven Topic Modeling and Sentiment Analysis of Systemic Lupus Erythematosus Discussions on Social Media: Cross-Platform Study.Journal of medical Internet research · 2026Article
- Article
- Patients with antiphospholipid antibodies preferentially seek health information from physicians: a cross-sectional online patient quantitative survey.Rheumatology international · 2025Article
- Canadian patient experiences of lupus nephritis: a qualitative analysis.Lupus science & medicine · 2023Article
- Stepping into the Void: Lessons Learned from Civil Society Organizations during COVID-19 in Rio de Janeiro.International journal of environmental research and public health · 2023Article
- 'Information is power': A qualitative exploration of co-producing education resources about cardiovascular disease in partnership with women living with lupus.Women's health (London, England)Article
Corrections and comments
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Authors and funding
33 authors at 20 institutions in 9 countries.
Funding
Abstract
objectiveWe conducted an international survey of patients with SLE to assess their access, preference and trust in various health information sources pre-COVID-19 and during the COVID-19 pandemic.
methodsPatients with SLE were recruited from 18 observational cohorts, and patients self-reporting SLE were recruited through five advocacy organisations. Respondents completed an online survey from June 2020 to December 2021 regarding the sources of health information they accessed in the 12 months preceding (pre-11 March 2020) and during (post-11 March 2020) the pandemic. Multivariable logistic regressions assessed factors associated with accessing news and social media post-11 March 2020, and self-reporting negative impacts from health information accessed through these sources.
resultsSurveys were completed by 2111 respondents; 92.8% were female, 76.6% had postsecondary education, mean (SD) age was 48.8 (14.0) years. Lupus specialists and family physicians were the most preferred sources pre-11 March 2020 and post-11 March 2020, yet were accessed less frequently (specialists: 78.5% pre vs 70.2% post, difference -8.3%, 95% CI -10.2% to -6.5%; family physicians: 57.1% pre vs 50.0% post, difference -7.1%, 95% CI -9.2% to -5.0%), while news (53.2% pre vs 62.1% post, difference 8.9%, 95% CI 6.7% to 11.0%) and social media (38.2% pre vs 40.6% post, difference 2.4%, 95% CI 0.7% to 4.2%) were accessed more frequently post-11 March 2020 vs pre-11 March 2020. 17.2% of respondents reported negative impacts from information accessed through news/social media. Those outside Canada, older respondents or with postsecondary education were more likely to access news media. Those in Asia, Latin America or younger respondents were more likely to access social media. Those in Asia, older respondents, males or with postsecondary education in Canada, Asia or the USA were less likely to be negatively impacted.
conclusionsPhysicians, the most preferred and trusted sources, were accessed less frequently, while news and social media, less trusted sources, were accessed more frequently post-11 March 2020 vs pre-11 March 2020. Increasing accessibility to physicians, in person and virtually, may help reduce the consequences of accessing misinformation/disinformation.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.