Rojas Marianela, Oyarzún Amaya, Ayala Jimena, Araya Magdalena
Universidad de Chile, Chile.
Instituto de Tecnología de los Alimentos, Universidad de Chile, Santiago, Chile.
Rev Chil Pediatr. 2019 Dec;90(6):632-641. doi: 10.32641/rchped.v90i6.1126.
The lifelong gluten-free diet (GFD) is the treatment of celiac disease (CD). Being a restrictive diet, it limits daily life and can impact on the health-related quality of life (HRQoL). Our objective was to assess HRQoL of celiac patients on a GFD, the concordance between patients - caregivers, and to compare the local results with international data.
Patients aged 8-18 years on a GFD for >6months (37 dyads) were evaluated. The "Celiac Disease Dutch Questionnaire" (CDDUX) was applied, which evaluates in two questionnaires (one applied to the child and another one to the caregiver/parent), three areas: i) having CD, ii) communication with others, and iii) the diet. Reliability, dimensionality, and internal consistency were assessed using the Cronbach coefficient.
More than 50% of patients and caregivers reported "well/very well" on sub-scales "having CD" and "GFD"; "communication" showed high percentages of "bad/very bad". Although there were no significant differences in HRQoL (global and subscale) perceived by patients and caregivers, there were when analyzing the answers of caregivers, who assigned better scores to boys (p=0.022) and to patients maintaining a non-strict GFD (p=0.049). Concordance between patients and caregivers was 39.2%.
HRQoL of the assessed celiac children was satisfactory, among the best repor ted in Latin America. "Having CD" and the need for a "GFD" have less influence on HRQoL than "communication" with others about the disease. The concordance found suggests that the caregivers' perception does not necessarily reflect what patients perceive.
终身无麸质饮食（GFD）是乳糜泻（CD）的治疗方法。作为一种限制性饮食，它限制了日常生活，并且可能会影响与健康相关的生活质量（HRQoL）。我们的目标是评估采用GFD的乳糜泻患者的HRQoL、患者与照顾者之间的一致性，并将本地结果与国际数据进行比较。
对8至18岁且采用GFD超过6个月的患者（37对）进行评估。应用了“荷兰乳糜泻问卷”（CDDUX），该问卷通过两份问卷（一份应用于儿童，另一份应用于照顾者/父母）评估三个方面：i）患有CD，ii）与他人交流，以及iii）饮食。使用克朗巴赫系数评估信度、维度和内部一致性。
超过50%的患者和照顾者在“患有CD”和“GFD”子量表上报告“良好/非常好”；“交流”方面显示“差/非常差”的比例很高。尽管患者和照顾者所感知的HRQoL（总体和子量表）没有显著差异，但在分析照顾者的答案时存在差异，照顾者给男孩（p = 0.022）和维持非严格GFD的患者（p = 0.049）的评分更高。患者与照顾者之间的一致性为39.2%。
所评估的乳糜泻儿童的HRQoL令人满意，是拉丁美洲报告的最佳结果之一。“患有CD”和对“GFD”的需求对HRQoL的影响小于与他人关于该疾病的“交流”。所发现的心皮一致性表明照顾者的认知不一定反映患者的认知。
