Health literacy among patients with inflammatory bowel disease: A systematic review

Objective:

Limited health literacy (HL) impairs patients' understanding and engagement in healthcare and might lead to poorer disease outcomes and avoidable healthcare costs, especially in chronic conditions such as inflammatory bowel disease (IBD). Therefore, we aimed to systematically review the current evidence on HL among IBD patients by assessing HL levels and exploring associations with clinical outcomes and quality of life (QoL).

Methods:

A systematic literature search was performed until December 2025, collecting data on HL levels and associations with clinical outcomes, QoL and healthcare utilisation. The Latitudes Network Appraisal tool for Cross-Sectional Studies and revised Cochrane risk-of-bias tool for randomised trials was used for quality assessment of the included studies. 

Results:

14 articles were included: ten cross-sectional studies, one prospective cohort, one retrospective cohort, one mixed-methods study and one randomised controlled trial. Across studies, 11 different tools were used to measure HL, each with a different cut-off value for limited HL. Marked geographical variation was observed in the prevalence of limited HL, with the highest rates in China (31-86%) and the lowest in the USA (4-40%). Limited HL was associated with reduced QoL, patient knowledge and self-management skills, but no association was found with adverse clinical IBD outcomes. 

Conclusions:

Reported HL rates varied widely between geographical areas, likely due to heterogeneity in measurement tools and sociodemographic differences. Limited HL was linked to poorer patient-reported outcomes such as QoL, but no clear association was found with clinical IBD outcomes. This highlights the need for further, standardised research on the impact of HL in IBD.