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.