Health-related Quality of Life in Patients with Inflammatory Bowel Disease 20 Years After Diagnosis: Results from the IBSEN Study

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Data on the long-term observation of health-related quality of life (HRQoL) in the inflammatory bowel diseases (IBD), Crohn's disease (CD), and ulcerative colitis are scarce. Our aim was to determine HRQoL in a population-based cohort of patients with IBD 20 years after diagnosis and its association with demographic and clinical factors and to compare HRQoL of the cohort with that of the background population.


Patients with IBD from a large population-based inception cohort (the IBSEN cohort) were invited to a prescheduled 20-year follow-up visit with a structured interview, a clinical examination, and laboratory tests. They completed the Short-Form 36 and the Norwegian Inflammatory Bowel Disease Questionnaire. The association between demographic and clinical factors and HRQoL was assessed with a linear regression analysis. Standardized scores were used to compare HRQoL in patients with that of the background population.


Of the still-living patients with IBD, 438 (73.1%) completed the HRQoL questionnaires. There were no differences in HRQoL scores between the patients with ulcerative colitis and those with CD. Women with CD obtained scores lower than those of men and women with CD in the background population. Current symptoms, increased disease activity, and not working were identified as factors associated with reduced HRQoL.


In this population-based IBD cohort, the overall HRQoL scores obtained 20 years after diagnosis were relatively unaffected compared with the background population. However, women with CD had lower HRQoL scores than men with CD and women in the background population. Active disease and not working were the main factors associated with impaired HRQoL scores.

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