The Reality of Patient-Reported Outcomes of Health-Related Quality of Life in an Italian Cohort of Patients with Inflammatory Bowel Disease: Results from a Cross-Sectional Study.

Inflammatory bowel disease (IBD) has a negative impact on patients' physical and psychological well-being, social performance, and working capacity, thereby worsening their health-related quality of life (HRQoL). Clinicians should take care of the patients' global health, including the psychological, social, and emotional spheres. We aimed to investigate the reality of patient-reported outcomes of HRQoL in a series of IBD patients. Consecutive Crohn´s disease (CD) and ulcerative colitis (UC) patients in clinical remission were recruited. The survey consisted of the Short Inflammatory Bowel Disease Questionnaire (S-IBDQ), the Hospital Anxiety and Depression Scale (HADS), the Brief Illness Perception Questionnaire (B-IPQ), and a questionnaire dealing with impact of IBD on patients' lives. Demographic and clinical characteristics were recorded. Of 202 participants (29% CD and 71% UC; 54% male; median age 48 years; mean disease duration 14 ± 11 years), 52% had poor HRQoL, 45% anxiety/depression, and 35% sleep disturbance and a high perception of disease (mean score 42.8 ± 14.3). In the multivariate analysis, a low HRQoL was rather associated with UC than CD ( = 0.037), IBD surgery ( = 0.010), disease duration ( = 0.01), sleep disturbance ( = 0.014), anxiety/depression ( = 0.042), and high illness perception ( = 0.006). IBD affected working performance and social activities in 62% and 74% of patients, respectively. Satisfaction regarding quality of care, biologics, and surgery approach were claimed in 73%, 69%, and 76% of patients, respectively. Although 84% of patients trusted their gastroenterologist, only 66% of them discussed IBD impact on HRQoL during visit. In a series of IBD patients in remission, the low HRQoL was significantly associated with surgery, disease duration, sleep disturbance, anxiety/depression, and high illness perception. Even though patients were satisfied with the quality of their care, it appears that clinicians should pay more attention to patients' emotional status.