Clinical Review: Knowledge gaps persist across regions, impacting patient experience and disease management.
Background & Rationale
Inflammatory bowel disease (IBD), encompassing Crohn’s disease and ulcerative colitis, is an increasingly prevalent chronic inflammatory condition worldwide. Effective disease management relies not only on pharmacological interventions but also on patient understanding of their condition. Suboptimal patient knowledge can lead to delayed diagnosis, reduced adherence to treatment, and diminished quality of life. Existing literature on IBD patient knowledge is fragmented and geographically limited. This scoping review aimed to synthesise current evidence regarding patient knowledge and awareness of IBD, identifying regional variations and knowledge gaps to inform targeted educational interventions. The authors note a need to understand how awareness evolves as IBD incidence rises globally.
Study Design
This scoping review followed the PRISMA-ScR guidelines. A systematic search was conducted across multiple databases, including PubMed, Embase, Scopus, and Web of Science, from inception to December 2023. Search terms encompassed IBD, Crohn’s disease, ulcerative colitis, patient knowledge, awareness, health literacy, and related concepts. Studies were included if they assessed IBD patient knowledge or awareness, regardless of study design. Data extraction focused on study characteristics, geographical location, assessed knowledge domains, knowledge gaps identified, and methods used to assess knowledge. The extracted data were then synthesised narratively, identifying key themes and patterns.
Patient Population
The review included 42 studies representing patient populations from 21 countries across six World Health Organization regions: Africa, the Americas, Eastern Mediterranean, Europe, South-East Asia, and the Western Pacific. The studies collectively involved over 12,000 IBD patients. A majority of included studies focused on patients with Crohn’s disease or ulcerative colitis, with some including both. The mean age of participants varied considerably across studies, ranging from 28 to 56 years. The proportion of male participants also varied, ranging from 35% to 68%.
Key Findings
The review revealed substantial variability in IBD knowledge among patients globally. Across all regions, patients demonstrated limited understanding of disease pathophysiology, with a mean knowledge score of 52% across studies utilising validated knowledge questionnaires. Common knowledge gaps included a lack of understanding regarding the role of the immune system in IBD development, the distinction between Crohn’s disease and ulcerative colitis, and the importance of long-term disease monitoring.
Regional differences were prominent. Patients in high-income countries generally exhibited higher levels of knowledge compared to those in low- and middle-income countries. Specifically, North American and European patients demonstrated better understanding of disease management strategies, including medication adherence and lifestyle modifications. In contrast, patients in Africa and Asia frequently lacked basic knowledge about disease symptoms, potential complications, and available treatment options.
Knowledge regarding extra-intestinal manifestations of IBD was consistently low across all regions, with less than 30% of patients correctly identifying common extra-intestinal symptoms. Furthermore, awareness of the psychological impact of IBD and the availability of psychosocial support services was limited. Studies consistently showed that patients with higher levels of education and longer disease duration tended to have greater disease knowledge.
Discussion
This scoping review highlights significant deficiencies in IBD patient knowledge globally, with substantial regional disparities. These findings underscore the need for tailored educational interventions designed to address specific knowledge gaps within different populations. The lower knowledge levels observed in low- and middle-income countries may be attributable to limited access to healthcare resources, cultural factors, and language barriers.
The consistent lack of understanding regarding extra-intestinal manifestations and the psychological impact of IBD suggests a need for holistic patient education that addresses the multifaceted nature of the disease. Improving patient knowledge is crucial for promoting shared decision-making, enhancing treatment adherence, and ultimately improving patient outcomes. The review identified that the majority of studies used questionnaires to assess knowledge, with limited use of qualitative methods to explore patient perspectives and experiences. Safety and tolerability of educational interventions were not directly assessed in the included studies, but the interventions themselves were generally considered low-risk.
Authors’ Conclusions
The authors conclude that IBD patient knowledge is suboptimal globally, with significant regional variations. They state that targeted educational interventions, culturally sensitive materials, and improved healthcare access are essential to address these knowledge gaps and empower patients to actively participate in their disease management. Further research is needed to evaluate the effectiveness of different educational strategies and to develop innovative approaches to enhance IBD awareness worldwide.
Reference
Singh A, Bhardwaj A, Jena A, Midha V, Sood A, Sharma V, Sebastian S. Patient knowledge and awareness on inflammatory bowel disease as it evolves as a global disease: a scoping review. Journal of Crohn’s & colitis. 2026;10(3):345-358. doi: 10.1093/ecco-jcc/jjag019.