Health literacy in patients with inborn errors of immunity

Health literacy (HL) is essential for managing chronic conditions such as inborn errors of immunity (IEI). Limited HL may lead to poor clinical outcomes and inefficient healthcare use; however, HL among IEI patients remains underexplored. The aim of this study was to evaluate HL levels in adult IEI patients using the Turkish Health Literacy Scale (TSOY-32) and to identify associated sociodemographic factors.

This cross-sectional study included 27 adult IEI patients receiving regular immunoglobulin therapy at an allergy and immunology clinic. Participants completed the TSOY-32 via face-to-face interviews. The scale assessed HL across two dimensions-Treatment and Services (TS) and Disease Prevention/Health Promotion (DP/HP)-and four information processing stages. Sociodemographic data were also collected.

According to the TSOY-32 general index, 44.4% of patients had inadequate or problematic HL. Significant associations were observed between HL levels (particularly in the DP/HP dimension) and age, gender, education, and marital status. Younger adults (18-34 years) showed higher HL than those aged 35 and older and married participants had lower HL than singles. Although HL improved with education, no significant link was found between educational level and overall HL. Economic status had a positive but nonsignificant relationship with HL.

A significant proportion of IEI patients had limited HL, which may negatively impact treatment adherence. Tailored educational interventions that take into account patients' HL levels (e.g., simplified visual materials, brief in-clinic education, digital tools) could help enhance self-management. Larger studies are warranted to clarify the determinants of HL and improve care in this population.