Patients with antiphospholipid antibodies preferentially seek health information from physicians: a cross-sectional online patient quantitative survey

Little is known about how patients with antiphospholipid syndrome (APS) or antiphospholipid antibodies (aPL) access and trust health information. This research aimed to: describe the sources of information most frequently accessed/trusted by patients with APS/aPL; identify if individuals with APS/aPL perceived their health had been negatively impacted by various sources and document obstacles to accessing health information. Patients meeting Revised Sapporo Criteria for APS or with ≥1 positive aPL on ≥2 occasions were recruited to an online survey regarding their health information use at diagnosis and within 6 months preceding survey completion. McNemar tests were used to compare percentages accessing and trusting each source at diagnosis/currently. 69 patients completed the survey; 88.4% were female, mean age was 47.4 years (SD 15.1). The sources most frequently accessed at diagnosis and currently were rheumatologists/lupus specialists, hematologists, and family physicians, yet patients accessed family physicians (47.8% vs. 31.9%, difference -15.9%, 95% CI - 29.2%, -2.7%) and hematologists (47.8% vs. 31.9%, difference -15.9%, 95% CI -31.1%, -0.8%) less frequently from diagnosis to currently. The most trusted sources at diagnosis and currently were rheumatologists/lupus specialists (82.6% vs. 92.8%) and family physicians (66.7% vs. 68.1%). Few respondents reported negative impacts from advocacy organizations (4.4%), websites (5.8%) and social media (4.4%). 20.3% reported challenges communicating with healthcare providers. Patients with aPL/APS preferentially seek health information from and trust their physicians. However, 20.3% of patients felt communication with healthcare providers was an obstacle to accessing information. There is a need for enhanced patient-physician communication.