Assessment of Health-Related Quality of Life in Ulcerative Colitis
A number of disease activity indices, specific to ulcerative colitis (UC), have been developed. In general, they are used in clinical trials but not in everyday clinical practice. Nonetheless, familiarity with these indices allows one to better assess and critique the results of clinical trials. Health-related quality of life (HRQOL) is significantly compromised in patients with inflammatory bowel disease, allowing for correlation between indices of disease activity and disease-specific measures of quality of life. This section explores a variety of tools used for evaluation of UC disease activity and HRQOL.
Two instruments are commonly used to evaluate quality of life in patients with inflammatory bowel disease. The inflammatory bowel disease questionnaire is a disease-specific questionnaire, while the Short Form 36-item survey (SF-36®) is more general in nature and can be applied to the general population. These measures have been used alone and in combination in clinical trials and clinical practice.
The Inflammatory Bowel Disease Questionnaire (IBDQ)
The Inflammatory Bowel Disease Questionnaire (IBDQ) is a 32-item questionnaire that was designed as an evaluative instrument for the assessment of quality of life in clinical trials. Ninety-seven inflammatory bowel disease (IBD) patients identified the 32 most frequent and important problems experienced as a result of the disease. Sixty-one IBD patients were then evaluated twice, with 1 month separating the evaluations. Disease activity indices, the IBDQ, and a number of other questionnaires were administered. Serial testing to improve wording and consultation with experienced clinicians resulted in the 32-item questionnaire, grouped into 4 domains: gastrointestinal symptoms (10 questions), systemic symptoms (5 questions), emotional function (12 questions), and social function (5 questions). The response to each item is ranged in a 7-point scale. In this scale, 7 corresponds to "best function" and 1 to "worst function." The overall score of the IBDQ ranges from 32 to 224 with higher scores reflecting better well-being. The final version of the IBDQ was tested for reproducibility, responsiveness, and validity and scored well. Reproducibility tested 2 issues: systemic changes over time and the variability of change. The IBDQ has become a valuable adjunctive tool in IBD clinical trials.2093 Subsequent to the introduction of the IBDQ in 1989, the tool has been validated in multiple languages throughout multiple trials of both Crohn’ disease (CD) and ulcerative colitis (UC) and has become widely accepted as the gold standard for measurement of quality of life in patients with IBD.
Using data from a clinical trial of 149 patients with CD, Irvine and colleagues constructed a 10-item questionnaire, choosing items that best explained changes in IBDQ scores. The resultant tool, called the Short IBD Questionnaire (SIBDQ), was then administered to 150 patients with CD and 45 patients with UC, demonstrating validity, reliability, and responsiveness.2725 The SIBDQ was further validated as a useful tool for evaluation of health-related quality of life in 61 patients with a diagnosis of UC, demonstrating reproducibility and responsiveness to change in disease activity.2726
The Short Form-36
A 36-item Short Form survey (SF-36®) was designed to evaluate health status in the Medical Outcomes Study. Designed for use in clinical practice and research, health policy evaluations, and general population surveys, the instrument includes 1 multi-item scale that assesses 8 health concepts:
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Limitations in physical activity because of health problems
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Limitations in social activities because of physical or emotional problems
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Limitations in usual role activities because of physical health problems
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Bodily pain
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General mental health (psychologic distress and well-being)
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Limitations in usual role activities because of emotional problems
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Vitality (energy and fatigue)
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General health perceptions
The survey was constructed for self-administration by persons age 14 and older and for administration by a trained interviewer in person or by telephone.2727 The SF-36® has been used widely and is accepted as a standard measure of health-related quality of life across disease states and in the general population. In studies of quality of life related to inflammatory bowel disease, this instrument has been used alone and in combination with the Inflammatory Bowel Disease Questionnaire.2728
Content on this page was last reviewed on October 31, 2009.
Content on this page was last changed on March 19, 2009.
References:| 2093. | Guyatt G, Mitchell A, Irvine EJ, et al. A new measure of health status for clinical trials in inflammatory bowel disease. Gastroenterology. 1989;96(3):804-810. |
| 2725. | Irvine EJ, Zhou Q, Thompson AK. The Short Inflammatory Bowel Disease Questionnaire: a quality of life instrument for community physicians managing inflammatory bowel disease. CCRPT Investigators. Canadian Crohn’s Relapse Prevention Trial. Am J Gastroenterol . 1996; 91(8):1571-1578. |
| 2726. | Jowett SL, Seal CJ, Barton JR, Welfare MR. The short inflammatory bowel disease questionnaire is reliable and responsive to clinically important change in ulcerative colitis. Am J Gastroenterol . 2001;96(10):2921-2928. |
| 2727. | Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care . 1992 Jun;30(6):473-483. |
| 2728. | Bernklev T, Jahnsen J, Lygren I, Henriksen M, Vatn M, Moum B. Health-related quality of life in patients with inflammatory bowel disease measured with the short form-36: psychometric assessments and a comparison with general population norms. Inflamm Bowel Dis . 2005;11(10):909-918. |
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