Development and subsequent refinement of the inflammatory bowel disease questionnaire: A quality-of-life instrument for adult patients with inflammatory bowel disease

Background: Health-related quality of life (HRQOL) describes the physical, social, and emotional attitudes and behavior of people in relation to health status. By the 1980s, HRQOL was noted to be impaired in chronic diseases but inflammatory bowel disease, had not been extensively described. Methods: This review summarizes the results of several studies describing the development and application of a disease-specific HRQOL instrument, the Inflammatory Bowel Disease Questionnaire (IBDQ). Results: An initial study described how patients with inflammatory bowel disease identified 150 problems they had experienced in four domains: bowel, systemic, emotional, and social function. Almost half of patients underreported impairment until encouraged by a reminder list. Thirty-two questions were included in the final questionnaire and were scored on a 7-point scale from 1 (worst) to 7 (best) for a range of possible scores from 32 to 224. Physicians' and spouses' global assessments correlated poorly with patient-reported HRQOL. Subsequent validation of the IBDQ suggested a strong correlation with disease severity (r = -0.5; p < 0.001) and a test-retest reliability of 0.7. Mean score changes of 16 to 30 points have been linked to changes in therapy. Statistically significant differences also occur between active and inactive disease. Results of four clinical trials have included the IBDQ as a measure of outcome. A self-administered version and a shortened version of the IBDQ have also been validated. Conclusions: The IBDQ is a valid, reliable, and sensitive measure that can be meaningfully applied in clinical trials. The short IBDQ may also be useful in clinical research and office practice.