Health Information-seeking Behavior in Patients with Antiphospholipid Syndrome: A Scoping Review with Original Data

Antiphospholipid syndrome (APS) is a complex disease that affects daily life. Previous studies have shown that poor information levels are correlated with lower health-related quality of life among individuals with APS. We conducted a scoping review on the available literature up to November 2025 to assess by what means health information-seeking behavior (HISB) among patients with APS has been evaluated. Furthermore, we conducted a cross-sectional survey in June 2021 to assess HISB among French-speaking patients with APS and to analyze HISB among internet posts related to APS between 2001 and 2021 using text analytics and cluster analysis.

Five studies were retrieved and described according to the scoping review methodology. With respect to surveys among French patients with APS, the main source of information identified is rheumatologists/Lupus/APS specialists (more than 85% of patients). The internet and social media are used by up to 30% of patients. More than 80% of patients trust information provided by specialists, and they are most untrusting of online information. Approximately 75% of the patients were satisfied with their level of information. Using text provided by the survey and internet content, we identified three main profiles of HISB among APS patients: the most important subjects were pregnancy, treatments, daily life and burden associated with APS. New information tools are needed to provide trustworthy, first-hand information to address the main identified subjects of concern expressed by patients.