Health literacy among people with systemic sclerosis: a scleroderma patient-centred intervention network (SPIN) cohort cross-sectional study

OBJECTIVE: Health literacy reflects the ability to find, understand, evaluate, and use information to make health-related decisions. We evaluated sociodemographic and disease factors associated with health literacy among people with systemic sclerosis (SSc). METHODS: Participants with SSc in the Scleroderma Patient-centred Intervention Network Cohort completed the Health Literacy Scale19-12 Item Questionnaire from February to November 2025. Multivariable linear regression was used to assess associations of sociodemographic and disease characteristics with health literacy. RESULTS: The 1,019 participants were mainly female (N = 898, 88%) and White (N = 850, 84%). Mean (SD) years of education was 15.5 (3.9). Most had limited cutaneous SSc (N = 669, 66%). Mean health literacy total score was 69.7; 438 (43%) participants had excellent or sufficient and 581 (57%) had problematic or inadequate health literacy. Education (1.63 points per 5 years, 95% CI 0.25 to 3.01) was significantly associated with higher health literacy scores. Compared to the United States, participants from Canada (-4.98 points, 95% CI -7.99 to -1.97), the United Kingdom (-7.79 points, 95% CI -12.03 to -3.55), France (-6.05 points, 95% CI -8.84 to -3.27), and Australia, Mexico, or Spain (-7.02 points, 95% CI -12.39 to -1.66) had significantly lower health literacy scores. Age, gender, race or ethnicity, marital status, time since first non-Raynaud symptom onset, and disease subtype were not associated with health literacy. CONCLUSION: The association between health literacy and education was small. Differences between countries may reflect self-evaluation tendencies. More work is needed to better understand health literacy measurement.