Aims
Patients with inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis, often require repeated endoscopic evaluations for disease monitoring, dysplasia surveillance, and mucosal healing assessment. Despite its clinical necessity, endoscopy can cause anxiety, procedural discomfort, and negatively impact quality of life. Understanding patient perceptions is essential to optimize monitoring strategies and enhance patient-centered care.
Methods
This prospective multicenter study included 200 consecutive IBD patients undergoing colonoscopy or sigmoidoscopy at tertiary centers between January 2023 and December 2025. Eligible patients were adults with confirmed IBD and at least one prior endoscopy. Patients with cognitive impairment, language barriers, or recent major surgery were excluded. Following each procedure, patients completed a validated questionnaire assessing anxiety, procedural discomfort, burden of bowel preparation, perceived necessity of the procedure, and willingness for future endoscopies. Data on disease type, activity (CDAI or partial Mayo score), prior endoscopies, age, sex, sedation, and complications were collected.
Results
Among participants, 108 (54%) had Crohn’s disease and 92 (46%) ulcerative colitis; mean age was 38.7 years, 52% female. Prior endoscopies ranged from 1 to 10 (median 3). Moderate-to-high pre-procedure anxiety was reported by 64%, higher in patients with active disease (VAS 7.2 vs 4.5, p<0.01), females, and younger patients. Anxiety slightly decreased in patients with >3 prior endoscopies. Bowel preparation was the most burdensome step for 52% of patients, especially during active disease (VAS 6.9 vs 5.1, p=0.02). Procedural discomfort was moderate in 65% and high in 14%, with sedation reducing discomfort significantly (VAS 4.3 vs 6.6, p<0.01).
Despite discomfort, 81% expressed willingness to adhere to future endoscopic monitoring if adequately informed. No significant differences were observed between Crohn’s disease and ulcerative colitis in perceptions or tolerance.
Conclusions
In conclusion, repeated endoscopies are perceived as necessary but are associated with anxiety and discomfort, particularly due to bowel preparation and anticipation. This multicenter study identifies high-risk patient profiles and highlights the importance of tailored strategies—optimized preparation, sedation, structured education, and patient-centered scheduling—to improve adherence, satisfaction, and overall quality of care. Incorporating patient perspectives into monitoring protocols supports shared decision-making and long-term treatment engagement.