哮喘联盟

   摘要
   本项目旨在描述葡萄牙哮喘儿童群体的生活质量，研究健康相关生活质量（HRQL）、哮喘严重程度、儿童的特征以及家长的精神病理学之间的相关性。此外，我们将儿童对健康相关生活质量的自身报告及家长代理的报告结果进行一致性评估。参加本试验的50个儿童哮喘患者（7～13岁）以及他们的主要照顾者均填写DISABKIDS-37以及其它自我陈述问卷。DISABKIDS-37问卷结果表明，两种版本问卷结果的各方面得分及总体得分间存在较好的内部一致性和关联性。儿童哮喘患者及他们的主要照顾者都积极地进行健康相关的生活质量评估。若儿童哮喘患者较早被诊断为哮喘，则他们的家长对健康相关的生活质量的评分较高。哮喘儿童对自身健康相关的生活质量的评分结果表明，若其主观对疾病严重程度的划分不同或医生对哮喘控制情况的评估结果不同，那其生活质量的评分结果也不同。哮喘病情未得到很好控制的哮喘儿童的生活质量低于其他组。除了体育运动限制方面的评分，哮喘儿童的自身评估及其家长对健康相关的生活质量评估一致性不高。该差异28%是由于哮喘儿童对自身疾病严重程度的评估与家长的认定不同导致的。本项目的研究结果表明，哮喘儿童对生活质量的自身评估应与其主要看护者的评分结果互补，我们推荐对两者的信息进行结合分析。

                         
 

（苏楠 审校）
Psychol Health Med. 2014 Oct 14:1-15. [Epub ahead of print]

 

Health-related quality of life in paediatric asthma: Children's and parents' perspectives.
 

Silva CM1, Barros L, Simões F.
 

Abstract
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.
 

Psychol Health Med. 2014 Oct 14:1-15. [Epub ahead of print]