Health information use by patients with systemic lupus erythematosus (SLE) pre and during the COVID-19 pandemic.

We 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. Patients 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. Surveys 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. Physicians, 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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Competing interests: S-CB’s work was supported in part by Basic Science Research Program through the National Research Foundation of Korea (NRF) funded by the Ministry of Education (NRF-2021R1A6A1A03038899). SB holds a James McGill Research Chair. The Montreal General Hospital Lupus Clinic is partially supported by the Singer Family Fund for Lupus Research. INB has received consulting fees, speaking fees, and/or honoraria from Eli Lilly, GlaxoSmithKline, AstraZeneca, UCB and Bristol Myers Squibb (<US$10 000 each) and research support from GlaxoSmithKline. INB is an NIHR Senior Investigator and is supported by Versus Arthritis UK, the NIHR Manchester Biomedical Research Centre and the NIHR Manchester Clinical Research Facility. MYC has received consulting fees from Janssen, AstraZeneca, Mallinckrodt Pharmaceuticals and MitogenDx (<US$10 000). AEC has received consulting fees from AstraZeneca/MedImmune, Bristol Myers Squibb and GlaxoSmithKline (<US$10 000 each). AEC holds the Arthritis Society Chair in Rheumatic Diseases at the University of Calgary. PRF has received consulting fees from AstraZeneca and GlaxoSmithKline (<US$10 000 each) and holds a tier 1 Canada Research Chair on Systemic Autoimmune Rheumatic Diseases at Université Laval. JGH’s work was supported by the Canadian Institutes of Health Research (grant MOP-88526). The Hopkins Lupus Cohort is supported by the NIH (grants AR-43727 and AR-69572). AM has received consulting fees from Janssen, Astellas and GlaxoSmithKline (<US$10 000 each), and a research fund from GlaxoSmithKline for investigator-sponsored research through the GSK Supported Studies Programme (proposal ID 10743). AM’s work was supported in part by the Ministry of Health, Republic of Singapore (grant reference: R-172-000-524-733). SM has received consulting fees from Exagen Diagnostics, Cugene, GlaxoSmithKline and Lilly, and has served on the Board of AstraZeneca and Lupus Foundation of America. MM has received consulting fees from AstraZeneca, AbbVie, GlaxoSmithKline and UCB. CP has received consulting fees from AstraZeneca and GlaxoSmithKline. RR-G has received consulting fees from AstraZeneca, Biogen, ThermoFisher and Aurinia Pharmaceuticals (<US$10 000 each). RR-G’s work was supported by the NIH (grants 5UL1-TR-001422-02 (formerly 8UL1-TR- 000150 and UL 1RR-025741), K24-AR-02318 and P30-AR-072579 (formerly P60-AR-064464 and P60-AR-48098)). She is the Gallagher Research Professor of Rheumatology at the Feinberg School of Medicine, Northwestern University. GR-I’s work was supported by the Department of Education, Universities and Research of the Basque Government. DJW has received consulting fees from Merck, EMD Serono, Pfizer, Lilly and Glenmark (<US$10 000 each). The rest of the authors declare that they have no relevant conflicts of interest.