Guyatt G, Mitchell A, Irvine E J, Singer J, Williams N, Goodacre R, Tompkins C
School of Nursing, Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada.
Gastroenterology. 1989 Mar;96(3):804-10.
We have developed a measure of subjective health status (quality of life) for patients with inflammatory bowel disease (IBD). Ninety-seven patients with IBD described problems they had experienced as a result of the disease; the 32 most frequent and important items were included in the Inflammatory Bowel Disease Questionnaire (IBDQ). Sixty-one IBD patients were evaluated twice. One month separated the evaluations, at which disease activity indices, the IBDQ, and a number of other questionnaires were administered. Reproducibility studies in 19 stable patients showed improvement in scores, but also a small within-person standard deviation. Responsiveness studies revealed large changes in scores in patients who had improved or deteriorated and suggested that the IBDQ was more responsive than a general health status measure. Responsiveness appeared greater in patients with ulcerative colitis than in those with Crohn's disease. Predicted and observed correlations between changes in IBDQ score and changes in other measures were similar. We conclude that although further testing is required, particularly in examining the relation between changes in the IBDQ and changes in the activity of Crohn's disease, the IBDQ shows promise as a measure of health status for clinical trials in IBD.
我们为炎症性肠病（IBD）患者制定了一种主观健康状况（生活质量）的测量方法。97名IBD患者描述了他们因该病而经历的问题；炎症性肠病问卷（IBDQ）纳入了32项最常见且最重要的项目。61名IBD患者接受了两次评估。两次评估间隔1个月，期间进行了疾病活动指数、IBDQ以及其他一些问卷的测评。对19名病情稳定的患者进行的重复性研究显示，评分有所改善，但个体内标准差较小。反应性研究表明，病情改善或恶化的患者评分变化很大，且提示IBDQ比一般健康状况测量方法更具反应性。溃疡性结肠炎患者的反应性似乎比克罗恩病患者更大。IBDQ评分变化与其他测量指标变化之间的预测相关性和观察到的相关性相似。我们得出结论，尽管还需要进一步测试，特别是在研究IBDQ变化与克罗恩病活动变化之间的关系时，但IBDQ有望作为IBD临床试验中健康状况的一种测量方法。
