Intest Res.  2021 Jan;19(1):45-52. 10.5217/ir.2019.00135.

Quality of life in inflammatory bowel diseases: it is not all about the bowel

• Keller R
• Mazurak N
• Fantasia L
• Fusco S
• Malek NP
• Wehkamp J
• Enck P
• Klag T

• KMID: 2512100
• DOI: http://doi.org/10.5217/ir.2019.00135

Abstract

Background/Aims
The inflammatory bowel diseases (IBD), ulcerative colitis (UC), and Crohn’s disease (CD) are chronic diseases mostly affecting young patients. As they are diseases accompanying patients for their entire life, and the quality of life (QUOL) interacts with disease activity, improving QUOL should be one of the main goals of therapy. This study aims to identify factors contributing to good or impaired QUOL.
Methods
Questionnaires addressing health-related QUOL and other psychological and social features were positioned on our institutions’ webpage and on the webpage of the largest self-help group for IBD in Germany. Patients were subdivided according to their QUOL score with a cutoff of <60. We used the Short Inflammatory Bowel Disease Questionnaire, the Assessment of the Demand for Additional Psychological Treatment, and the Fear of Progression Questionnaire Short Form.
Results
High numbers of patients in both subgroups showed an impaired QUOL (87.34% in UC, 91.08% in CD). Active extraintestinal manifestations, smoking, high fear of progression and high demand for psychotherapy were associated with reduced QUOL. In addition, polypharmacological interventions did not result in a good QUOL, but ostomies are linked to improved QUOL especially in CD patients.
Conclusions
Scores used in clinical day-to-day-practice mainly focusing on somatic factors do not sufficiently address important aspects concerning QUOL. Most importantly, extraintestinal manifestations show a hitherto underestimated impact on QUOL.

Keyword

Quality of life; Crohn disease; Colitis, ulcerative; Extraintestinal manifestations

Figure

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  Fig. 1. Quality of life (QUOL) in patients with CD and UC (whole cohort). QUOL is reduced in the majority of patients, but do not differ significantly between IBD-entities. A Short Inflammatory Bowel Disease Questionnaire (SIBDQ) score <60 is considered as moderate to severe impairment of QUOL. CD, Crohn’s disease; UC, ulcerative colitis; IBD, inflammatory bowel disease.

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  Fig. 2. Extraintestinal manifestations (EIM) are significantly associated with a reduced quality of life (QUOL). (A) 35.93% (UC) to 55.47% (CD) of IBD patients suffer from active EIM. (B) QUOL is significantly reduced in patients with active EIM in both entities. The boxplot’s median is depicted using a horizontal black line. Cutoff of the score for the QUOL was 60 points in the Short Inflammatory Bowel Disease Questionnaire (SIBDQ) and is depicted using a red line (≥60 normal QUOL, <60 moderately to severely reduced QUOL). A t-test was used for statistical analysis. aP<0.001. UC, ulcerative colitis; CD, Crohn’s disease; IBD, inflammatory bowel disease.

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  Fig. 3. Influence of abdominal stoma on quality of life (QUOL). (A) 9.17% (UC) to 16.45% (CD) of the IBD patients in our cohort have or had a stoma application during their course of disease. (B) QUOL of CD patients can be improved by stoma application, while this procedure does not show an effect on QUOL in UC patients in our cohort. The boxplot’s median is depicted using a horizontal black line. Cutoff of the score for the QUOL was 60 points in the Short Inflammatory Bowel Disease Questionnaire (SIBDQ) and is depicted using a red line (≥60 normal QUOL, <60 moderately to severely reduced QUOL). A t-test was used for statistical analysis. aP<0.05. UC, ulcerative colitis; CD, Crohn’s disease; IBD, inflammatory bowel disease.

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  Fig. 4. Smoking behavior and its influence on quality of life (QUOL) in IBD patients. (A) 11.54% (UC) to 29.90% (CD) of IBD patients currently smoke in our patient cohort. (B) Smoking reduces QUOL significantly in CD and by trend in UC. The boxplot’s median is depicted using a horizontal black line. Cutoff of the score for the QUOL was 60 points in the Short Inflammatory Bowel Disease Questionnaire (SIBDQ) and is depicted using a red line (≥60 normal QUOL, <60 moderately to severely reduced QUOL). A t-test was used for statistical analysis.aP<0.01. IBD, inflammatory bowel disease; UC, ulcerative colitis; CD, Crohn’s disease.

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  Fig. 5. Predictors of normal quality of life (QUOL) in IBD patients (whole cohort, UC patients and CD patients, respectively, defined by Short Inflammatory Bowel Disease Questionnaire [SIBDQ] score ≥60). Regression analyses of all IBD patients in our cohort (UC and CD) (A) and singular entities UC (B) and CD (C) reveal different variables predicting a normal QUOL. The direction of arrows indicates “positive” (up) or “negative” (down) association of the respective predictor with QUOL. In the case of dichotomous variables “yes” (up, presence of a factor) or “no” (down, absence of a factor) increases/decreases QUOL. IBD, inflammatory bowel disease; UC, ulcerative colitis; CD, Crohn’s disease.

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