Silva Cláudia M, Barros Luísa, Simões Fátima
a Department of Psychology and Education , University of Beira Interior , Covilhã , Portugal.
b Faculty of Psychology , University of Lisbon , Lisbon , Portugal.
Psychol Health Med. 2015;20(8):940-54. doi: 10.1080/13548506.2014.969745. Epub 2014 Oct 14.
This study aimed to describe the quality of life of a group of Portuguese children with asthma, to explore the association between health-related quality of life (HRQL), asthma severity, child's characteristics and parental psychopathology. Additionally, the concordance between the children's HRQL self-report and the parents' HRQL proxy was assessed. Fifty children with asthma (7-13 years) and their primary caregiver participated in the study by filling out the DISABKIDS-37 and other self-report questionnaires. Results for the DISABKIDS-37 supported a good internal consistency and associations between the facets and the global score, in the two versions of the questionnaire. Children and their caregivers scored the child's HRQL positively. Parents of children with an asthma diagnosis for a longer period reported better HRQL. The distribution of the HRQL scores in the child's version showed differences across categories of subjective severity rated by children and across categories of asthma control assessed by the physician. The group with uncontrolled asthma obtained lower HRQL scores than the other groups. There was a lack of convergence between self-report and parent's report of HRQL, with the exception of the physical limitation facet. Asthma severity assessed by the child and parental psychopathology explained 28% of the variance in the children's self-rated HRQL. Findings reinforce that children and caregivers' reports are complementary to each other and support the recommendation to use both information sources.
本研究旨在描述一组患有哮喘的葡萄牙儿童的生活质量，探讨健康相关生活质量（HRQL）、哮喘严重程度、儿童特征与父母精神病理学之间的关联。此外，还评估了儿童HRQL自评与父母HRQL代理报告之间的一致性。50名患有哮喘的儿童（7 - 13岁）及其主要照顾者通过填写《残疾儿童-37》及其他自评问卷参与了本研究。《残疾儿童-37》的结果支持了该问卷两个版本中各方面与总体得分之间良好的内部一致性及关联性。儿童及其照顾者对儿童的HRQL评价均为积极。哮喘诊断时间较长的儿童的父母报告的HRQL更好。儿童版本中HRQL得分的分布在儿童主观评定的严重程度类别以及医生评估的哮喘控制类别之间存在差异。哮喘未得到控制的组的HRQL得分低于其他组。除身体限制方面外，HRQL的自评与父母报告之间缺乏一致性。儿童评定的哮喘严重程度和父母精神病理学解释了儿童自评HRQL中28%的变异。研究结果强化了儿童和照顾者的报告相互补充的观点，并支持使用这两种信息来源的建议。
