Barrio Josefa, Román Enriqueta, Cilleruelo MaLuz, Márquez Manuela, Mearin Ma Luisa, Fernández Cristina
*Departaments of Pediatrics, Hospital Universitario de Fuenlabrada †Departaments of Pediatrics, Hospital Universitario Puerta Hierro ‡Asociación de Celíacos de Madrid, Madrid, Spain §Department of Pediatrics, Leiden University Medical Center, Leiden, The Netherlands ||Epidemiology, Hospital Universitario Clínico, Madrid, Spain.
J Pediatr Gastroenterol Nutr. 2016 Apr;62(4):603-8. doi: 10.1097/MPG.0000000000000963.
The aim of the study was to assess health-related quality of life (HRQOL) using the Coeliac Disease Dutch Questionnaire (CDDUX) in Spanish children with coeliac disease.
The CDDUX was cross-culturally adapted according to international consensus guidelines. HRQOL was assessed in coeliac members of the Madrid Coeliac Association ages 8 to 18 years using the adapted CDDUX. Cronbach α coefficient was determined as a measure of intraquestionnaire reliability and intraclass correlation coefficients as a measure of reliability between scores awarded by children and parents. Demographic and clinical variables associated with HRQOL were also assessed.
A total of 1602 children of 3122 registered Madrid Coeliac Association members ages 8 to 18 years were invited to participate. The questionnaire was completed by 480 families (30%): 214 only by parents, 214 by parents and their children, and 52 only by children. Cronbach α coefficient for the total score for parents was 0.90, and for children 0.88 (0.75-0.90 by scales). Mean total (standard deviation [SD]) HRQOL scores in children and parents were 55.5 (SD 12.7) and 53.89 (SD 12.19), respectively, with no differences detected in paired comparisons between the 2 groups. Significantly worse HRQOL scores were recorded in children showing a nonclassical clinical presentation, in those not adhering to treatment and in those reporting difficulties in following the diet.
The CDDUX questionnaire emerged as reliable for use in Spanish children with celiac disease. Overall, both children and parents felt the disease had no substantial negative impacts on patient HRQOL.
本研究旨在使用荷兰乳糜泻问卷（CDDUX）评估西班牙乳糜泻儿童的健康相关生活质量（HRQOL）。
根据国际共识指南对CDDUX进行跨文化改编。使用改编后的CDDUX对马德里乳糜泻协会8至18岁的乳糜泻患者的HRQOL进行评估。确定Cronbach α系数作为问卷内部信度的衡量指标，组内相关系数作为儿童和父母评分之间信度的衡量指标。还评估了与HRQOL相关的人口统计学和临床变量。
共邀请了马德里乳糜泻协会3122名8至18岁注册会员中的1602名儿童参与。480个家庭（30%）完成了问卷：214个家庭仅由父母完成，214个家庭由父母及其子女完成，52个家庭仅由子女完成。父母总分的Cronbach α系数为0.90，儿童为0.88（各分量表为0.75 - 0.90）。儿童和父母的平均总HRQOL得分（标准差[SD]）分别为55.5（SD 12.7）和53.89（SD 12.19），两组配对比较未发现差异。非典型临床表现的儿童、未坚持治疗的儿童以及报告饮食依从困难的儿童的HRQOL得分明显更差。
CDDUX问卷在西班牙乳糜泻儿童中使用是可靠的。总体而言，儿童和父母都认为该疾病对患者的HRQOL没有实质性负面影响。
