Ian N Bruce, Anselm Mak, Jiacai Cho, Christine A Peschken, Paul R Fortin, John G Hanly, Bernardo A Pons-Estel, Romina Nieto, Anca D Askanase, Jung-Min Shin, Leigha Rowbottom, Leanne Mielczarek, Karin Tse, Ashley Marion, Juan Carlos Cáhiz-González, Teresa G Cattoni, Alain Cornet, Rosalind Ramsey-Goldman, Sang-Cheol Bae, Daniel J Wallace, Sasha Bernatsky, Guillermo Ruiz-Irastorza, Murray B Urowitz, May Y Choi, Yvan St Pierre, Ricky Chin, Susan J Elliott, Francesca S Cardwell, Marta Mosca, Ann Elaine Clarke, Susan Manzi, Michelle A Petri, Juanita Romero-Diaz
Journal: Lupus science & medicine 2022;9(1):e000755
PMID: 36283746
OBJECTIVE
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.
METHODS
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.
RESULTS
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.
CONCLUSIONS
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.
© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
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