Abstract

Abstract Background While restorative proctocolectomy with ileal pouch-anal anastomosis (IPAA) is the preferred surgical approach in patients with medically refractory ulcerative colitis (UC) or UC-related dysplasia, a significant proportion of patients develop pouchitis and/or report decreased health related quality of life (HRQOL) at some point after IPAA. We designed this study to 1) evaluate the association between recently reported pouchitis and specific Patient-Reported Outcome Measurement Information System (PROMIS) domains (anxiety, depression, fatigue, pain interference, sleep disturbance, and social role satisfaction) and HRQOL as assessed by the Cleveland Global Quality of Life (CGQL) scale, and 2) describe the correlations between specific PROMIS domains and overall HRQOL. Methods IBD Partners is an internet-based cohort that collects patient reported survey data every 6 months. In patients who reported having an IPAA for UC, we performed cross sectional analyses to compare patient characteristics and patient reported outcomes among patients who reported pouchitis in the prior 6 months versus those without reported pouchitis. To identify the specific social, emotional, and physical domains most associated with HRQOL, we evaluated the correlations between PROMIS domains (measured in T-scores) and CGQL scores using Pearson’s test. Results Among 118 patients, 70 (59%) reported pouchitis in the prior 6 months. There were no significant differences in age, sex, race, or number of stages of IPAA between patients with and without recent pouchitis (Table 1). Patients with recent pouchitis were more likely to demonstrate higher levels of anxiety (53.8 vs. 48.5, p=0.005), depression (52.2 vs. 46.9, p=0.005), fatigue (55.8 vs. 47.8, p<0.001), pain interference (54.4 vs. 48.1, p=0.001), sleep disturbance (54.3 vs. 48.8, p=0.001), and lower levels of social satisfaction (47.4 vs. 53.6, p=0.001). As assessed by the CGQL, patients with pouchitis demonstrated decreased Quality of Life (6.64 vs. 7.71, p=0.007), Quality of Health (6.31 vs. 7.63, p=0.001), and Quality of Energy (5.77 vs. 7.17, p=0.001). Social satisfaction was the PROMIS domain that most strongly correlated with Quality of Life among patients with recent pouchitis (r= 0.62, Table 2) while sleep demonstrated the strongest correlation among those without pouchitis (r= -0.74). Conclusions Patients with recent pouchitis demonstrated a significant reduction in overall HRQOL as well as decrements in specific areas of social, emotional, and physical health. Among patients without pouchitis, strong correlations between multiple PROMIS domains and HRQOL were also demonstrated. These findings indicate that the PROMIS measures may be useful in assessing these areas of health that are clinically important after IPAA, allowing for tailored interventions in this population.

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