Abstract

Abstract BACKGROUND Inflammatory bowel disease (IBD) is associated with significant patient and societal burden. Treatments for IBD have traditionally focused on symptom management. However, clinical guidelines (Selecting Therapeutic Targets in Inflammatory Bowel Disease [STRIDE] II) now recommend treat-to-target approaches. Mucosal healing on endoscopy is becoming a key prognostic parameter in the management of IBD. In light of new guidelines, we aimed to qualitatively assess patient understanding of, and perspectives on, endoscopic measures in the context of disease monitoring and assessing treatment impact. METHODS Twenty patients diagnosed with IBD across the United States, United Kingdom, Spain, Italy, and France participated in TeleWebs (web-enabled phone interviews; United Kingdom, Spain, Italy, France) or a 5-day online bulletin board exchange (United States) discussing their condition and experiences. Specific information regarding disease history, conversations with physicians, experiences with endoscopy, and reactions to information shared on endoscopy were captured over a 5-day period. All respondents were recruited from double opt-in volunteer consumer market research panels. RESULTS Patients generally link disease remission to the absence of symptoms. Knowledge and perceptions of endoscopic measurements are largely driven by their physician perspectives and explanation to patients. Some patients are aware of healthy mucosa as a key part of remission, while others have no concept of the term. Patients report they find it psychologically reassuring to know that they are “healthy inside”. Due to its value, most patients are willing (5.7 on a 1 to 7 Likert Scale) to undergo endoscopy annually, but would be reluctant to do so more frequently. Table 1 outlines barriers and drivers reported by patients on the adoption of endoscopy. CONCLUSION The insight from this study provides understanding of patient perceptions of endoscopy and its place in treating their IBD. This study demonstrates that despite the barriers to the use of endoscopy, patients recognize its clinical relevance for disease management and are willing to periodically undergo a procedure.

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