How does IBD affect quality of life?

The quality of life (QOL) for inflammatory bowel disease (IBD) patients understandably tends to vary with symptom severity.1 This would be expected for all chronic disorders but there are specific aspects of IBD worth highlighting. For instance, some illnesses are “socially acceptable.” One might casually mention to a friend or colleague that “my ulcer is acting up” or “I just had stents placed for coronary artery disease.” Other disorders such as AIDS, cancer, and IBD are less likely to be casually discussed with friends or family. In fact, IBD tends to be a “silent” disorder for many patients since any reference to crampy pain, bowel activity, or rectal bleeding is often embarrassing. Patients therefore may receive less understanding with regard to their social interactions and performance. IBD can affect work and social interactions in diverse ways. One of my patients with Crohn's disease (CD) and bowel urgency declined a job at a life insurance company doing data entry since there were many workers in 1 large space and a bathroom that only accommodated 1 woman at a time. Patients with bowel urgency often cannot take a car trip into the countryside since they might not have immediate access to a bathroom facility. There are few things as embarrassing and devastating as a bowel accident in public. Some patients frequently fear bowel incontinence even though they have never experienced it. CD tends to have a greater negative impact on health-related quality of life (HRQOL) than ulcerative colitis (UC) and thus raises questions about studies that report on IBD patients as a group rather than distinguishing between the 2 disorders, recognizing that some overlap may occur in colitis patients. Some patients experience chronically poor QOL from IBD and consider this as a normal baseline. They may be quite surprised to find how much their sense of well-being improves after appropriate medical or surgical intervention. There are instruments that measure the impact of disease on HRQOL.2 Global instruments measure the sum impact of many domains (pain, functional capacity, emotional status, etc.) on HRQOL with single questions and can be used for any disorder. Generic instruments for HRQOL assess more specific issues and can also be used in a variety of disorders. Disease-specific instruments, such as the Inflammatory Bowel Disease Questionnaire (IBDQ), ask focused questions about domains such as pain, bowel function, systemic symptoms, emotional function, general psychological well-being, and social function. The disease-specific instrument is more useful for tracking IBD patients' course and response to therapy. These instruments, as well as the Crohn's Disease Activity Index (CDAI), are used primarily in clinical trials since they tend to be too cumbersome for clinical practice. The IBDQ-Deutschland for UC showed a correlation with the Clinical Activity Index and the Endoscopic Activity Index.3 Multiple instruments have been used in some studies and often include a psychologic survey. The short IBDQ may be more attractive to clinicians interested in having objective evidence of response to therapy. Muir et al4 used both disease-specific and generic instruments to evaluate patients before and after ileal pouch anal anastomosis for UC. The authors stress that improvement in well-being occurred as early as 1 month after the take-down of the ileostomy and were similar to a normal population by 1 year. This information can be used to counsel patients considering such surgery. The use of the Health Status Questionnaire administered preoperatively to CD patients undergoing resection or strictureplasty and then followed at 3-month intervals showed significant HRQOL improvement as compared to baseline.5 This improvement was durable for 6 years and should also support the value of surgery when HRQOL is low. DeRooy et al6 approached QOL issues in 259 IBD patients by utilizing a questionnaire with items beginning with, “Because of your condition, how concerned are you with…?” The top 10 concerns were energy level, effects of medications, the uncertain nature of the disease, having surgery and/or an ostomy bag, achieving full potential, loss of bowel control, being a burden on others, producing unpleasant odors, and body image. Older age in this study had a significant impact on concerns, primarily disease stigma in women, those with longer disease duration, and those unable to work because of IBD. The impact of anxiety and depression on the frequency of relapse in IBD patients in remission was prospectively studied by Mittermaier et al.7 Anxiety and depression associated with an impaired HRQOL appear to be risk factors for early recurrence and adversely affect the natural course of the disease. Additional factors are the role of the disease activity in generating psychologic abnormalities and the possibility that depression may exacerbate IBD by altering cellular and humoral immunity. Graff et al8 indicated that there was no differentiation between UC and CD patients with regard to their psychological functioning and found that there was a continuing negative impact on QOL by the disease, even when it is inactive. Medications, crampy pain, and anemia can combine to decrease performance at school and in social settings. Side effects of IBD therapy also negatively affect QOL.9 Adolescents with IBD are at risk for problems with self-esteem.10 Children and adolescents with IBD commonly feel a sense of vulnerability and diminished control over their lives and perceive themselves as different from their peers and siblings although they may develop effective coping mechanisms.11 The response to pain and uncomfortable examinations may lead to a chronic fearful disposition. However, adolescents with mild IBD of at least 1 year's duration, when studied with several instruments measuring psychosocial functioning, were found to be similar to healthy children.12 Women with IBD may experience dyspareunia and lack of sexual desire because, in part, of their disease and medications. This is more severe in patients with CD and may contribute to decreased fertility.13