Abstract

<h3>Background</h3> Patients with inflammatory bowel disease (IBD) are at higher risk of developing colorectal cancer (CRC). Guidelines recommend periodic endoscopic surveillance to detect and manage dysplasia. We aimed to explore patient knowledge and perceptions of CRC risk and surveillance and identify potential barriers to surveillance practice. <h3>Methods</h3> A 44-item questionnaire was administered to IBD patients with colitis attending gastroenterology clinics between July 2021 and January 2022. <h3>Results</h3> Of 281 respondents, 180 (64%) had ulcerative colitis and 96 (34%) had Crohn’s disease, with 121 (43%) diagnosed for ≥10 years. Two hundred and fifteen (77%) patients self-rated their understanding of IBD as ‘good/excellent’. Two hundred and three patients (72%) recognised that CRC risk is higher in IBD but 48 (17%) felt the risk of CRC was lower in IBD or were unsure. Non-smoking (p=0.046) and being a Crohn’s and Colitis UK (CCUK) member (p=0.008), were associated with better CRC risk awareness. Greater self-rated understanding was significantly predictive of improved CRC risk knowledge (p=0.037). One hundred and four (37%) respondents stated that their IBD healthcare professional (HCP) had previously discussed CRC risk with them, and this was associated with better CRC knowledge(p=0.003). On multivariate analysis, CCUK membership (OR 1.01; 95% CI 0.42-2.38; p=0.004), and prior HCP discussion (OR 1.31; 95% CI 0.62-2.78; p=0.002) were significantly associated with greater awareness of CRC risk. Concerning the most appropriate test to screen for dysplasia, 242 patients (86%) stated colonoscopy, but only 16 (6%) were aware that colonic surveillance is recommended 8-10 years after diagnosis and 97 (35%) recognised that optimum timing of surveillance is when IBD is in remission. Information sources reported by patients included gastroenterology HCPs (43%), hospital patient leaflets (17%) and online patient support organisations e.g., CCUK (27%). The majority (77%) stated they would agree to have a surveillance colonoscopy if advised by their doctor. of the 281 participants, bowel preparation (48%) and discomfort (43%) were the factors most likely to dissuade them from agreeing to colonoscopic surveillance. <h3>Conclusion</h3> Patient knowledge of CRC risk and surveillance practice in IBD is variable. Modifiable factors associated with improved knowledge are discussion with HCPs and CCUK membership. Our findings underscore the need for further patient education to aid informed decision-making between patients and HCPs and to improve patient adherence to surveillance practice. The authors wish to acknowledge the funding provided by Guts UK for this work.

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