Multidimensional Patient-Reported Outcomes and Quality of Life at Diagnosis of IBD: A Population-Based Inception Cohort Study

BACKGROUND AND AIMS: Patient-reported outcomes (PROs) are pivotal in assessing treatment efficacy and estimating the burden of inflammatory bowel diseases (IBDs). We investigated PROs at the time of IBD diagnosis. METHODS: The Short Inflammatory Bowel Disease Questionnaire (SIBDQ), IBD Disability Index (IBD-DI), Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F), and disease activity-related PROs were assessed in the Copenhagen IBD Inception Cohort, a prospective, population-based cohort of patients newly diagnosed with IBD between May 2021 and May 2023. RESULTS: A total of 203 ulcerative colitis (UC) and 116 Crohn's disease (CD) patients were recruited. At diagnosis, 160 (78.8%) and 99 (85.3%) patients with UC and CD, respectively, reported moderate-to-severe impairment in at least 1 PRO (P = .18), with 89 (43.8%) and 74 (63.8%), respectively, reporting moderate-to-severe impairment in at least 2 PROs (P < .01). Being female, the disease extent of UC, and extraintestinal manifestations were associated with impaired PROs. There were no differences found according to CD phenotype. FACIT-F, IBD-DI, and SIBDQ scores showed weak, but significant, correlations with the Mayo endoscopic score in UC, and the FACIT-F score with C-reactive protein. In CD, SIBDQ, IBD-DI, and FACIT-F correlated moderately with C-reactive protein and fecal calprotectin but not with the endoscopic severity of CD. None of the PROs correlated with iron, ferritin, or vitamin D levels. Among the most prevalent symptoms reported were fatigue, abdominal pain, urgency, and passing of blood in both CD and UC. CONCLUSIONS: We found a substantial patient-reported disease burden in newly diagnosed IBD, underscoring the importance of vigilant PRO monitoring in clinical practice.