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

Abstract

Purpose of review: 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.

Recent findings: 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.