Living with IBD: Limited patient knowledge correlates with poorer outcomes in IBD globally.

Background & Rationale

Inflammatory bowel disease (IBD), encompassing Crohn’s disease and ulcerative colitis, exhibits increasing global prevalence. Effective disease management relies not only on specialist care but also, crucially, on patient understanding of their condition. This understanding impacts adherence to treatment, proactive engagement in self-management, and timely communication with healthcare professionals. Despite the rising incidence of IBD worldwide, evidence regarding patient knowledge and awareness of the disease remains fragmented and geographically variable. A comprehensive overview of existing literature was therefore needed to assess the current state of patient understanding of IBD internationally.

Study Design

Researchers undertook a scoping review adhering to the PRISMA guidelines. A systematic search was conducted across multiple databases, including PubMed, Embase, Cochrane Library and Web of Science, to identify relevant studies published between January 2010 and November 2023. Search terms focused on IBD, patient knowledge, awareness, understanding, health literacy, and related concepts. Studies were selected for inclusion if they assessed IBD knowledge or awareness in patients, or the general population regarding IBD, using quantitative or qualitative methodologies. Data extraction focused on study characteristics, participant details, knowledge assessment methods, and key findings relating to IBD awareness.

Patient Population

The review encompassed 48 studies with a combined total of 11,824 participants. The studies represented all inhabited continents. Predominantly, studies focused on individuals diagnosed with IBD (n=33, 7,523 patients). Fifteen studies (n=4,301) assessed knowledge within the general public. Patient age varied across studies – most included adults, however four studies also included paediatric populations. The majority of studies originated from high-income countries, Europe and North America.

Key Findings

Across the included studies, patient knowledge regarding IBD demonstrated significant gaps. General awareness of IBD symptoms was low, with less than 50% of the general population able to identify diarrhoea, abdominal pain, and rectal bleeding as potential indicators of IBD. Knowledge of the distinction between Crohn’s disease and ulcerative colitis was also limited. Among diagnosed patients, understanding of disease pathophysiology, long-term complications (e.g. cancer risk), and the importance of adherence to medication varied widely. Approximately 60% of IBD patients demonstrated adequate knowledge relating to their treatment plan. Levels of disease-specific health literacy were associated with increased self-efficacy in disease management. Researchers identified disparities in knowledge related to geographical location, socio-economic status and educational background.

Discussion

The scoping review highlights consistent deficiencies in IBD awareness amongst both patients and the general public globally. The finding that almost half of the general population cannot identify basic symptoms is concerning, potentially leading to delayed diagnosis and increased disease morbidity. Within diagnosed populations, the substantial variability in disease knowledge underlines the need for tailored educational interventions. These interventions should target specific knowledge gaps and consider the influence of socio-demographic factors. Regarding safety and tolerability, the review did not assess interventions or individual study harms, but suggests that improved patient knowledge has the potential to empower patients to participate more fully in their care. The review suggests a need for standardised assessments of patient knowledge that can be used to monitor the effectiveness of educational initiatives in future.

Authors’ Conclusions

The authors concluded that there is a substantial lack of knowledge and awareness of IBD worldwide, amongst both diagnosed patients and the public. They advocate for increased investment in IBD education for both patients and healthcare professionals and highlighted a need for culturally appropriate resources that cater to diverse populations. The scoping review underscores that improved IBD awareness can contribute to earlier diagnosis, optimised disease management, and enhanced quality of life for individuals living with these chronic conditions.

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; DOI: 10.1093/ecco-jcc/jjag019.