Abstract
BACKGROUND: Patient-reported outcome measure scores must be interpretable to be effective in a clinical setting. In this retrospective cohort study, we sought to establish the minimum clinically important difference (MCID) and patient acceptable symptom state (PASS) for health-related quality of life in Crohn's disease and to apply these thresholds to patients undergoing Crohn's-related bowel resection. METHODS: Eligible participants were adults with Crohn's disease completing a patient-reported outcome measure and an additional anchor question about digestive satisfaction or change from a prior clinical visit. Multiple questionnaires were evaluated for alignment with digestive satisfaction, and the best-performing short inflammatory bowel disease questionnaire (sIBDQ) was retained for further analysis. Clinically meaningful threshold ranges were established for the sIBDQ through anchor- and distribution-based methodologies. These thresholds were applied to patients undergoing Crohn's-related bowel resection in three areas: rates of target score achievement at postoperative time points, factors associated with sIBDQ scores at final follow-up, and accessibility in the electronic medical record. RESULTS: There were 492 and 228 responses included in the PASS and MCID analyses, respectively. For the sIBDQ, the PASS ranged from 51 to 63, while the MCID ranged from 6.5 to 9.5. In the 215 patients undergoing Crohn's-related bowel resection, the preoperative sIBDQ median (IQR) was 49 (30, 69) compared to postoperative scores of 56 (40, 73) at 1-12 months, 56 (39, 73) at 13-24 months, and 58 (42, 73) at more than 24 months. The PASS was achieved in 179 (84%) patients for at least one postoperative time point. Preoperative sIBDQ score and male sex were associated with higher quality of life at final follow-up. CONCLUSION: In Crohn's disease, clinically meaningful targets for quality of life may complement traditional metrics when monitoring progress after operative intervention.