Health-related quality of life after diagnosis of ulcerative colitis and Crohn's disease: 3-year trajectories and factors associated with clinically meaningful improvement (the IBSEN III cohort).

BACKGROUND

Evidence for the clinical importance of changes in health-related quality of life (HRQoL) over time in unselected patients with ulcerative colitis (UC) and Crohn's disease (CD) is limited. We aimed to describe HRQoL trajectories, determine clinically meaningful HRQoL improvement, and identify factors associated with such improvement during the first 3 years after diagnosis.

METHODS

Adults with UC and CD from a population-based inception cohort completed the Inflammatory Bowel Disease Questionnaire (IBDQ) and the 36-Item Short Form Survey (SF-36) at inclusion and at the 1-year and 3-year follow-ups. HRQoL trajectories were estimated using linear mixed-effects models. Clinically meaningful improvement was defined using established minimal clinically important difference (MCID) thresholds (IBDQ ≥16; SF-36 physical and mental component summary scores ≥3). Associations between prespecified variables and MCID achievement at follow-up were assessed using multivariable logistic regression.

RESULTS

Among 1016 patients (UC: 68%; CD: 32%), IBDQ and SF-36 physical and mental component summary scores improved at both follow-ups, and approximately half of the patients achieved the corresponding MCID thresholds. HRQoL scores remained below general Norwegian population norms, and trajectories were similar for UC and CD. Symptomatic remission was consistently associated with higher odds of clinically meaningful HRQoL improvement, whereas depressive symptoms, substantial fatigue, and irritable bowel-like symptoms were associated with lower odds. Endoscopic remission, biologic therapy, and bowel surgery during the first year were not significantly associated with clinically meaningful improvement.

CONCLUSIONS

Clinically meaningful HRQoL improvement was achieved by about half of the patients and was consistently associated with lower symptom and psychosocial burden.