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

• Main Authors: Ronald Keller, Nazar Mazurak, Laura Fantasia, Stefano Fusco, Nisar P Malek, Jan Wehkamp, Paul Enck, Thomas Klag
• Format: Article
• Language: English
• Published: Korean Association for the Study of Intestinal Diseases 2021-01-01
• Series: Intestinal Research
• Subjects: quality of life; crohn disease; colitis, ulcerative; extraintestinal manifestations
• Online Access: http://www.irjournal.org/upload/pdf/ir-2019-00135.pdf
• ISSN: 1598-9100; 2288-1956

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.