Trust in Health Information Sources Among Patients with Systemic Lupus Erythematosus in the Social Networking Era: The TRUMP2-SLE Multicentre Study

Objectives The rise of social networking services (SNS) has significantly impacted how patients with systemic lupus erythematosus (SLE) acquire health information, potentially influencing their discussions with healthcare providers. This study aimed to identify the preferences, actual access, and trust levels in various health information sources among SLE patients, along with associated factors. Methods A cross-sectional study was conducted from June 2020 to August 2021 across five university medical centres in Japan, involving 510 SLE patients aged 20 years and older. The study measured access to and preferences for health information sources, including SNS, and assessed trust in these sources. Factors influencing, such as internet usage and health literacy (HL) (functional, communicative, and critical), were analyzed using Poisson regression with robust error variance. Results Among the respondents, 98.2% expressed trust in doctors, whereas lower trust was observed in websites/blogs (52.0%) and SNS (26.9%). Despite this, the internet was the most frequent initial source of health information (45.3%), encompassing medical institutions' homepages, patient blogs, Twitter, and Instagram. Longer internet use was linked to increased trust in homepages/blogs and SNS. Higher functional HL correlated with greater trust in doctors and lower trust in websites/blogs and SNS, while higher communicative HL was associated with increased trust in doctors, homepages, and blogs. Conclusion Many SLE patients seek online health information, including SNS, before consulting rheumatologists. Internet usage duration and multidimensional HL influence trust in online health information sources. Rheumatologists and healthcare providers should account for these factors when disseminating health information and engaging with patients.