van Doorn Roesja K, Winkler Lex M F, Zwinderman Koos H, Mearin M Luisa, Koopman Hendrik M
Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands.
J Pediatr Gastroenterol Nutr. 2008 Aug;47(2):147-52. doi: 10.1097/MPG.0b013e31815ef87d.
The development of a disease-specific, health-related, quality-of-life questionnaire for children ages 8 to 18 with celiac disease (CD), together with a parent-as-proxy version.
We used a focus-group method (bottom-up approach) to investigate the impact of CD on children's everyday lives and selected 24 items to create a preliminary disease-specific questionnaire. This questionnaire, together with the complementary generic quality-of-life questionnaire DUX-25, was sent to 756 children with CD in the Netherlands and was returned by 530 of them. With the help of statistical analyses (Cronbach alpha, factor analysis, Pearson correlation, Student t test, paired samples t test, and item response theory), we tested the psychometric performance of the 24 items.
We reduced the questionnaire to 12 items: the Celiac Disease DUX (CDDUX). The CDDUX has 3 subscales: "Communication" (3), "Diet" (6), and "Having CD" (3). This questionnaire proved to be reliable, valid, and feasible and able to discriminate between perception of severity in cases of CD as assessed by parents.
Children with a better perception of their own health status have a higher score on the CDDUX questionnaire. The whole group seems to have a lower quality of life than the healthy reference group on all domains of the DUX-25. The new disease-specific questionnaire CDDUX provides information about how children with CD think and feel about their illness. The questionnaire may enable researchers and clinicians to determine the consequences of this illness and the effects of clinical interventions on several aspects of daily living.
为8至18岁的乳糜泻（CD）患儿开发一份特定疾病的、与健康相关的生活质量问卷，以及一份家长代理版问卷。
我们采用焦点小组法（自下而上的方法）来调查CD对儿童日常生活的影响，并选择了24个项目来创建一份初步的特定疾病问卷。这份问卷，连同补充性的通用生活质量问卷DUX - 25，被发送给荷兰的756名CD患儿，其中530名患儿回复了问卷。借助统计分析（克朗巴哈系数、因子分析、皮尔逊相关性、学生t检验、配对样本t检验和项目反应理论），我们测试了这24个项目的心理测量性能。
我们将问卷缩减至12个项目：乳糜泻DUX（CDDUX）。CDDUX有3个分量表：“沟通”（3个项目）、“饮食”（6个项目）和“患有乳糜泻”（3个项目）。这份问卷被证明是可靠、有效且可行的，并且能够区分家长评估的CD严重程度感知情况。
对自身健康状况感知较好的儿童在CDDUX问卷上得分较高。在DUX - 25的所有领域，整个研究组的生活质量似乎都低于健康参照组。新的特定疾病问卷CDDUX提供了有关CD患儿对其疾病的想法和感受的信息。该问卷可能使研究人员和临床医生能够确定这种疾病的后果以及临床干预对日常生活多个方面的影响。
