Patient knowledge and awareness on inflammatory bowel disease as it evolves as a global disease: a scoping review

Patient knowledge is pivotal to inflammatory bowel disease (IBD) management, yet educational opportunities vary widely worldwide. This scoping review maps existing evidence on patient knowledge, explores regional and demographic differences, and identifies gaps to guide culturally adaptable interventions.

Following PRISMA-ScR guidelines, PubMed and Embase were searched up to December 31, 2025, for studies assessing patient knowledge in IBD. Eligible adult and pediatric studies were independently screened and synthesized by two reviewers across key knowledge domains, including disease basics, treatment, complications, colorectal cancer (CRC) risk, surgery, vaccination, and diet.

From 8464 records, 53 studies met inclusion criteria. Validated tools, including CCKNOW and IBD-KNOW, predominated in adult studies, whereas IBD-KID and IBD-KID2 were used in pediatric populations. Knowledge levels varied widely: correct understanding of anatomy (36%-68%), risk factors (16%-85%), CRC risk (24%-78%), and surgery (13%-16%) was frequently suboptimal. Only 5%-51% recognized azathioprine as an immunosuppressant. Awareness of vaccination (39%-78%) and dietary relevance (23%-65%) remained limited. Gastroenterologists were the primary information source (42%-96%). Higher knowledge was associated with both sociodemographic factors (female sex, younger age, higher educational attainment) and disease-related characteristics (longer disease duration, prior exposure to biologics or surgery, Crohn's disease phenotype). Patients in Europe and North America had higher awareness than those in Asia and the Middle East, probably due to better healthcare access and patient education infrastructure.

Global IBD knowledge and awareness remain inadequate and uneven across regions and domains. Updated, culturally appropriate and adaptable assessment tools and multidisciplinary, technology-enabled educational strategies are needed to enhance IBD literacy.