Silva N, Crespo C, Carona C, Bullinger M, Canavarro M C
Faculty of Psychology and Education Sciences, University of Coimbra, Coimbra, Portugal.
Child Care Health Dev. 2015 Jan;41(1):112-21. doi: 10.1111/cch.12147. Epub 2014 May 5.
Children's health-related quality of life (HrQoL) and psychological problems are important outcomes to consider in clinical decision making in paediatric asthma. However, children's and parents' reports often differ. The present study aimed to examine the levels of agreement/disagreement between children's and parents' reports of HrQoL and psychological problems and to identify socio-demographic, clinical and family variables associated with the extent and direction of (dis)agreement.
The sample comprised 279 dyads of Portuguese children with asthma who were between 8 and 18 years of age (M = 12.13; SD = 2.56) and one of their parents. The participants completed self- and proxy-reported questionnaires on paediatric generic HrQoL (KIDSCREEN-10), chronic-generic HrQoL (DISABKIDS-37) and psychological problems (Strengths and Difficulties Questionnaire). Children's and parents' perceptions of family relationships were measured with the Family Environment Scale and the caregiving burden was assessed using the Revised Burden Measure.
The child-parent agreement on reported HrQoL and psychological problems was poor to moderate (intraclass correlation coefficients between 0.32 and 0.47). The rates of child-parent discrepancies ranged between 52.7% (psychological problems) and 68.8% (generic HrQoL), with 50.5% and 31.5% of the parents reporting worse generic and chronic-generic HrQoL, respectively, and 33.3% reporting more psychological problems than their children. The extent and direction of disagreement were better explained by family factors than by socio-demographic and clinical variables: a greater caregiving burden was associated with increased discrepancies in both directions and children's and parents' perceptions of less positive family relationships were associated with discrepancies in different directions.
Routine assessment of paediatric HrQoL and psychological problems in healthcare and research contexts should include self- and parent-reported data as complementary sources of information, and also consider the family context. The additional cost of conducting a more in-depth assessment of paediatric adaptation outcomes can be offset through more efficient allocation of health resources.
儿童健康相关生活质量（HrQoL）和心理问题是儿科哮喘临床决策中需要考虑的重要结果。然而，儿童和父母的报告往往存在差异。本研究旨在探讨儿童和父母关于HrQoL和心理问题报告的一致/不一致程度，并确定与（不）一致的程度和方向相关的社会人口学、临床和家庭变量。
样本包括279对葡萄牙哮喘儿童及其父母中的一方，儿童年龄在8至18岁之间（M = 12.13；SD = 2.56）。参与者完成了关于儿科通用HrQoL（儿童生活质量量表-10）、慢性通用HrQoL（残疾儿童量表-37）和心理问题（长处与困难问卷）的自我报告和代理报告问卷。使用家庭环境量表测量儿童和父母对家庭关系的看法，并使用修订后的负担量表评估照顾负担。
儿童与父母在报告的HrQoL和心理问题上的一致性较差至中等（组内相关系数在0.32至0.47之间）。儿童与父母的差异率在52.7%（心理问题）至68.8%（通用HrQoL）之间，分别有50.5%和31.5%的父母报告其孩子的通用和慢性通用HrQoL更差，33.3%的父母报告其孩子的心理问题比实际情况更多。与社会人口学和临床变量相比，家庭因素能更好地解释不一致的程度和方向：更大的照顾负担与两个方向上差异的增加相关，而儿童和父母对不那么积极的家庭关系的看法与不同方向上的差异相关。
在医疗保健和研究背景下，对儿科HrQoL和心理问题的常规评估应包括自我报告和父母报告的数据作为补充信息来源，同时也应考虑家庭背景。通过更有效地分配卫生资源，可以抵消对儿科适应结果进行更深入评估的额外成本。
