Abstract

Abstract Background Patients with inflammatory bowel diseases (IBD) often experience impaired quality of life (QoL) and fatigue. In the current study, we aimed to investigate QoL and fatigue at the time of IBD diagnosis and determine their association with the disease presentation. Methods Incident adult patients (≥18 years old) with newly diagnosed ulcerative colitis (UC) or Crohn’s disease (CD) according to the Copenhagen IBD Criteria were included in the IBD Prognosis Study, a prospective, population-based, inception cohort representing approximately 20% of the Danish population (1.1 million). QoL was assessed using EQ-5D-5L and Short inflammatory Bowel Disease Questionnaires (SIBDQ), while fatigue was assessed using the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) scale. A severe disease presentation was defined by the need for glucocorticoids, immunomodulators, biologics, or surgery within three months of disease. Multivariable logistical regression analyses were conducted by adjusting for gender, age, and disease phenotype. Results Out of the original cohort, 203 (65.9%) and 116 (57.7%) patients with incident UC and CD, respectively, responded to the questionnaires without differences between responders and non-responders. The mean EQ-5D-5L index values were significantly lower in patients with UC (0.82, SD 0.17) and CD (0.79, SD 0.23), compared to the Danish background population (both p<0.001). The difference between UC and CD was also statistically significant (p<0.001). Further, more than every third of patients reported severely reduced SIBDQ (UC 29.6%, CD 43.1%, p=0.04). Severe fatigue was experienced frequently at the diagnosis (UC 26.1%, CD 30.2%, p=0.43), and was more common compared to the control group (means: UC 37.2 (SD 12.0), CD 35.3 (SD 11.5), control group: p<0.001). Female gender and extensive UC were independently associated with severely impaired SIBDQ and fatigue in patients with UC, while EIMs were associated with both outcomes in UC and CD (Table 1). Finally, severely reduced SIBDQ and severe fatigue were independently associated with a severe disease presentation, as well as IBD-related hospitalization specifically, in both UC and CD (Figure 1). Conclusion In this prospective population-based inception cohort of newly diagnosed IBD, we found a high proportion of patients with severely impaired generic QoL, SIBDQ, and fatigue compared to healthy controls. This study emphasizes the importance of addressing these negative symptoms in patients with IBD and their prognostic impact on the disease presentation. Ref: 1. Jensen MB et al., Scand J Public Health. 2023. doi: 10.1177/14034948211058060. 2. Montan I et al., Value Health. 2018. doi: 10.1016/j.jval.2018.03.013.

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