Development and subsequent refinement of the inflammatory bowel disease questionnaire: A quality-of-life instrument for adult patients with inflammatory bowel disease
Development and subsequent refinement of the inflammatory bowel disease questionnaire: A quality-of-life instrument for adult patients with inflammatory bowel disease
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DOI：
10.1097/00005176-199904001-00003
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发表时间：
1999-04-01
影响因子：
2.9
通讯作者：
Irvine, EJ
中科院分区：
文献类型：
--
作者：
Irvine, EJ
背景：健康相关生活质量（HRQOL）描述了人们与健康状况相关的身体、社会和情感态度和行为。到20世纪80年代，人们注意到慢性疾病的HRQOL受损，但炎症性肠病尚未得到广泛描述。方法：本文综述了几种描述疾病特异性HRQOL仪器——炎症性肠病问卷（IBDQ）的开发和应用的研究结果。结果：一项初步研究描述了炎症性肠病患者如何识别他们在四个领域经历的150个问题：肠道、全身、情感和社会功能。几乎一半的患者在收到提醒清单之前都低估了损伤。最终问卷中包含32个问题，并以7分制进行评分，从1（最差）到7（最好），得分范围从32到224。医生和配偶的整体评估与患者报告的HRQOL相关性较差。随后对IBDQ的验证表明，IBDQ与疾病严重程度有很强的相关性（r = -0.5; p < 0.001），重测信度为0.7。16到30分的平均得分变化与治疗的变化有关。活动性疾病和非活动性疾病之间也存在统计学上的显著差异。四项临床试验的结果将IBDQ作为结果的衡量标准。IBDQ的自我管理版本和缩短版本也已得到验证。结论：IBDQ是一种有效、可靠、灵敏的测量方法，可用于临床试验。短IBDQ在临床研究和办公室实践中也可能有用。
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.