Illness Perceptions and Depression Are Associated with Health-Related Quality of Life in Youth with Inflammatory Bowel Disease

Background In youth with inflammatory bowel disease (IBD), health-related quality of life (HRQOL) has been shown to be affected by individual disease factors and specific psychological factors. The innovative aim of this study is to examine the combined impact of psychological factors (illness perceptions, cognitive coping, anxiety, and depression) on HRQOL, over and above the associations of demographic and disease factors with HRQOL in youth with IBD. Method Data on clinical disease activity, illness perceptions, cognitive coping, anxiety, depression, and HRQOL were prospectively collected in 262 consecutive youth (age 10–20, 46.6% male) with confirmed IBD. Multiple linear regression analyses tested the associations of demographic, disease, and psychological variables with HRQOL in separate groups for Crohn’s disease (CD; N = 147) and ulcerative colitis and IBD unclassified (UC/IBD-U; N = 115), using age-specific validated instruments. Results In both disease groups, more negative illness perceptions ( ß = − .412; ß = − .438, p < .001) and more depression ( ß = − .454; ß = − .279, p < .001) were related to lower HRQOL. In the UC/IBD-U group, more anxiety was related to lower HRQOL ( ß = − .201, p = .001). The model with the psychological variables explained a large and significant amount of variance in both groups: 74% and 83%, respectively ( p < .001). Conclusion In 10–20-year-old IBD patients, negative illness perceptions and depression were significantly and more strongly associated with lower HRQOL than demographic and disease factors. Thus, it is important to integrate psychological factors in the treatment for IBD patients. To improve HRQOL in young IBD patients, psychological interventions should be targeted at negative illness perceptions and depression.