Background: The Short Inflammatory Bowel Disease Questionnaire (SIBDQ), a validated inflammatory bowel disease (IBD) specific measure of health related quality of life (HRQOL), is a proprietary instrument. We aimed to create and evaluate a novel measure of HRQOL among patients with Crohn’s disease (CD) or ulcerative colitis (UC) utilizing widely available patient reported outcomes (PROs). Methods: Utilizing longitudinal data collected in the Crohn’s and Colitis Foundation of America (CCFA) Partners internet cohort, we analyzed baseline and follow-up responses including the SIBDQ (licensed from McMaster University, Hamilton, Ontario), questions selected from several Patient-Reported Outcomes Measurement Information System domains, and other PROs, including disease activity assessments. The population was separated into training and test sets. Potential questions were compared to the 4 SIBDQ domains and the composite SIBDQ score using Wilcoxon Rank Sum and Pearson correlation analysis. Responsiveness of the measure to changes in disease activity was assessed using Wilcoxon Rank Sum testing. Results: Among 7,670 patients (63% CD, 37% UC), we identified candidate PRO questions based on correlations with each SIBDQ domain, with 5 PRO questions selected (Pearson correlation coefficient r ranging from 0.560-0.738, Table 1). The 5-question measure correlated well with the composite SIBDQ in the training (r=0.883, p<0.001) and test set (r=0.879, p<0.001). The 5-question measure also demonstrated significant responsiveness to changes in disease activity over time, in both CD and UC (Table 2). Conclusions: We created a novel measure of HRQOL that is composed of freely available PROs and demonstrates responsiveness to changes in disease activity among patients with both CD and UC. This potential new measure of HRQOL among patients with IBD decreases patient burden, and may offer substantial benefits as a new assessment tool in research settings and in clinical practice.
