Abstract Background Limited health literacy (HL) impairs patients’ understanding and engagement in medical care and might lead to poorer disease outcomes and avoidable healthcare cost, especially in chronic conditions such as inflammatory bowel disease (IBD).1,2 However, the prevalence of limited HL and its consequences on clinical outcomes among patients with IBD have been scarcely investigated. Therefore, we aimed to systematically review the current evidence on HL in patients with IBD, by assessing HL levels and exploring associations with clinical outcomes, quality of life (QoL), and healthcare utilization. Methods A systematic literature search was performed across six databases (Embase, Medline, PsycINFO, Web of Science, and CINAHL Plus), identifying relevant articles up until July 2025. The search included a combination of the keywords “inflammatory bowel disease”, “Crohn’s disease”, “ulcerative colitis”, “health literacy” and “patient knowledge”. HL levels and associations with clinical outcomes, QoL, and healthcare utilization were collected from the selected studies. The Latitudes Network Appraisal tool for Cross-Sectional Studies3 and revised Cochrane risk-of-bias tool for randomized trials4 were used to assess the risk of bias and reporting quality of each study. Results The initial search identified 1043 unique articles, of which 9 were included in the final synthesis (cross sectional: n = 7; prospective cohort: n = 1; randomized controlled trial: n = 1). Across all studies, eight different tools were used to measure HL, each with a different cut-off value for limited HL (Table 1). There was a high geographical variation in the prevalence of limited HL, with the highest rate observed in China (86%), and the lowest in the United States (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 (Table 2). Conclusion Although limited HL was common, reported HL rates varied widely between geographical areas. This might be attributed to the heterogeneity in measurement tools, as well as sociodemographic differences. Limited HL was consistently 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, standardized research on the effect of HL in IBD. References: 1. Shahid R, Shoker M, Chu LM, Frehlick R, Ward H, Pahwa P. Impact of low health literacy on patients’ health outcomes: a multicenter cohort study. BMC Health Serv Res. 2022;22(1):1148. 2. Wu JR, Holmes GM, DeWalt DA, Macabasco-O’Connell A, Bibbins-Domingo K, Ruo B, et al. Low literacy is associated with increased risk of hospitalization and death among individuals with heart failure. J Gen Intern Med. 2013;28(9):1174-80. 3. Downes MJ, Brennan ML, Williams HC, Dean RS. Development of a critical appraisal tool to assess the quality of cross-sectional studies (AXIS). BMJ Open. 2016;6(12):e011458. 4. Sterne JAC, Savović J, Page MJ, Elbers RG, Blencowe NS, Boutron I, et al. RoB 2: a revised tool for assessing risk of bias in randomised trials. Bmj. 2019;366:l4898. Conflict of interest: Mr. Pierik, Robert-Jan: None. Visser, Elyke: Received a speaker fee from Lilly Leemreis, Desiree: Has received consulting fees from Janssen, Takeda, AbbVie, Galapagos and Lily. CJvdW has received research grants from ZonMW, Falk and Pfizer van der Woude, Janneke: Grant: Janssen, Pfizer, Falk, Personal Fees: MSD, Abbott, Ferring, Abbvie, Takeda De Vries, Annemarie C.: Served on advisory boards for Takeda, Janssen, Bristol Myers Squibb, Abbvie, Pfizer, and Galapagos and has received unrestricted research grants from Takeda, Janssen, and Pfizer. West, Rachel: Has received payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events from Ferring, Pfizer, Galapagos, AbbVie and Janssen. Derikx, Lauranne: Lauranne Derikx has served on advisory boards as a speaker for Abbvie, Johnson & Johnson, Alfasigma, Takeda, and Pfizer. She has received independent research funding from Pfizer.
Pierik et al. (Thu,) studied this question.
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