Abstract Background With the expanding array of therapeutic options for Crohn’s disease (CD) and ulcerative colitis (UC), there is an increasing need to examine features of optimal disease control that reflect patient priorities. Views on IBD Expectations and Well-being - Patients and Treatment providers (VIEW-PT): an analysis based on the IBD Disease Specific Programme (DSP)™, aimed to identify features of optimal disease control in CD and UC, with inclusion of patient and healthcare professional (HCP) perspectives. Methods An iterative 3-Stage approach was used to identify features of optimal disease control in CD and UC (Table 1). In Stage 1, features of optimal disease control were identified by gastroenterologist (GI) advisors, a targeted literature search, and exploratory analyses of the Adelphi Real World IBD DSP. In Stage 2, features from Stage 1 were prioritized by patient advisors and additional features recommended for inclusion. In Stage 3, GI and advanced practice provider (APP) advisors provided further input on relevance of the expanded list of features, terminology, and categorisation. Features mentioned unprompted by patient, GI or APP advisors were cross-referenced to earlier stages and included if identified by ≥4 sources (see details in Table 1). GI and APP advisors provided feedback on similarities and differences of features of optimal disease control for CD vs UC. Results In Stage 1, nine features were identified as most relevant in defining optimal disease control in CD and UC: bleeding, bowel movement frequency, bowel urgency, endoscopic healing, fatigue, pain, quality of life, sleep disturbance, and steroid use. Faecal incontinence and mental health were added in Stage 2 following patient input. GI and APP advisors confirmed relevance of the 11 features in Stage 3; extraintestinal manifestations and biomarkers were added based on advisor recommendation and recurrence at earlier stages. Terminology was finalised and features ordered based on advisors’ recommendations, categorised as symptoms, functional outcomes, or markers of inflammation (Figure 1). GI and APP advisors advocated to include the same features for CD and UC, acknowledging expected variation in prioritisation by indication and across individual patients. Conclusion By considering a range of sources and including patient perspectives, optimal disease control in CD and UC was found to be a multi-faceted concept, incorporating symptoms, functional outcomes, and markers of inflammation. Patient advisors highlighted the importance of faecal incontinence and mental health, which may be overlooked in clinical practice. This robust framework of optimal disease control can be adopted to aid with development of individual IBD management plans in clinical practice.
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