What is the patient's perspective: How important are patient-reported outcomes, quality of life and disability?

Inflammatory bowel disease (IBD) is known to influence physical, psychological, familial and social dimensions of life. Over the past two decades, attention has been focused on the ability of IBD to alter patients' quality of life. A number of general and disease-specific scales have been used to assess quality of life in patients with IBD. The Inflammatory Bowel Disease Questionnaire (IBDQ) is the most widely disease-specific tool used in clinical trials. Forty to fifty million individuals in the USA now live with potentially disabling conditions. Disability usually refers to an individual's inability to perform a task successfully. Disability refers to the problems that are experienced in different areas or health domains, whereas quality of life refers to how the individual feels about these limitations and restrictions. Data about disability are objective descriptions that differ from subjective appraisals such as quality of life, well-being, and personal satisfaction with life. For instance, difficulties in walking (disability) may be in stark contrast to how the individual feels about this difficulty (quality of life). It should be emphasized that the concepts of health-related quality of life and disability are different but not mutually exclusive. When compared to quality of life, disability remains poorly investigated in IBD. Work is the only dimension of disability that has been widely assessed in IBD. Similar to multiple sclerosis and rheumatoid arthritis, developing a specific instrument capable of evaluating disability in IBD is a prerequisite to undertaking clinical trials aimed at identifying therapies capable of changing their clinical course.