Abstract Background Patient knowledge is central to management of inflammatory bowel disease (IBD), yet patient information and educational opportunities remain inconsistent globally. This scoping review aimed to map existing evidence on IBD-related knowledge and awareness in patients with IBD, explore regional and demographic variations, identify determinants of knowledge, and highlight research gaps to inform culturally adaptable interventions. Methods Following the PRISMA-ScR guidelines, PubMed, Embase, and Scopus were searched for studies assessing knowledge or awareness among IBD patients. Eligible studies included adult or pediatric cohorts with IBD, both ulcerative colitis (UC) or Crohn’s disease (CD), reporting extractable primary data. Two reviewers independently screened, extracted, and synthesized data descriptively and thematically across key domains - anatomy, disease general knowledge, risk factors, pharmacotherapy, complications, colorectal cancer (CRC) risk, surgery, vaccination, and diet. Results From 9509 records, 40 studies were included across diverse regions. Among awareness tools, the Crohn’s and Colitis Knowledge Score (CCKNOW) and IBD-KNOW were mainly used in adults 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%) remained suboptimal. Only 5-51% identified azathioprine as an immunosuppressant. Awareness of vaccination in patients on immunosuppressants (39-78%) and role of diet in IBD (23-65%) was limited. Higher knowledge correlated with female sex, younger age, higher education, longer disease duration, biologic or surgical exposure and CD phenotype. Patients in Europe and North America demonstrated greater awareness than those in Asia and the Middle East. Gastroenterologists were the main source of patient knowledge (42–96%), while internet and other digital platforms are increasingly used globally. Conclusion Global IBD knowledge remains 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 worldwide. Conflict of interest: Singh, Arshdeep: No conflict of interest Bhardwaj, Arshia: No conflict of interest Sharma, Riya: No conflict of interest Mahajan, Ramit: No conflict of interest Sharma, Vishal: None Midha, Vandana: No conflict of interest Sood, Ajit: Ajit Sood received honorarium for speaker events from Pfizer India and Takeda India. Jena, Anuraag: None Sebastian, Shaji: Grant: Takeda, Tillots pharma, Biogen, Pfizer, Abbvie, Johnson & Johnson, Olympus -Odin Vision Personal Fees: Tillots, Johnson & Johnson, Olympus Odin Vision, AbbVie, Takeda, Merck, Pharmacosmos, Amgen, Eli Lilly, BMS, Odin Vision Non-financial Support: Tillots, Takeda, AbbVie, Celltrion, Johnson & Johnson, Eli Lilly, Alphasigma, Ferring Pharma
Singh et al. (Thu,) studied this question.