Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 - W26, 20246, Hamburg, Germany.
Department of Pediatric Surgery, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Drottning Silvias Barn O Ungdomsjukh, Rondvägen 10, 41685, Göteborg, Sweden.
Orphanet J Rare Dis. 2021 Mar 6;16(1):120. doi: 10.1186/s13023-021-01748-x.
The aim was to compare parent and child-reported health-related quality of life (HRQOL) of children born with esophageal atresia (EA) and determine factors that affect the level of parent-child agreement.
We included 63 parent-child dyads of children born with EA aged 8-18 from Germany and Sweden. The generic PedsQL 4.0™ questionnaire and the condition-specific EA QOL questionnaire were used to assess children's HRQOL from parents' and children's perspectives. The PedsQL™ Family Impact Module was used to assess parental HRQOL and Family Functioning.
On an individual level, intra-class correlation coefficients indicated strong levels of parent-child agreement (.61-.97). At the group level, the analyses showed no significant differences between the responses of parents and children. When a disagreement occurred, parents were more likely to rate generic HRQOL lower than the children (19-35%) and condition-specific HRQOL higher than the children (17-33%). Findings of the binary logistic regression analyzes showed that the child's age, gender, and country (Germany vs. Sweden) were significant predictors of parent-child agreement in condition-specific HRQOL. We did not identify any significant variables that explain agreement for the generic HRQOL.
The parent-child agreement is mostly good, suggesting that parent-reports are a reliable source of information. However, discrepancies may occur and can be explained by the child's age, gender, and country (Sweden vs. Germany). Both perspectives are essential sources for treating EA patients and should not be considered right or wrong. Instead, this information broadens the perspective on pediatric EA patients.
本研究旨在比较患有食管闭锁（EA）患儿的家长报告和患儿报告的健康相关生活质量（HRQOL），并确定影响亲子一致性的因素。
我们纳入了来自德国和瑞典的 63 对 EA 患儿及其家长。采用通用 PedsQL 4.0™ 问卷和特定于 EA 的 EA QOL 问卷从家长和患儿角度评估儿童的 HRQOL。采用 PedsQL™家庭影响模块评估父母的 HRQOL 和家庭功能。
在个体水平上，组内相关系数表明亲子一致性水平较高（.61-.97）。在群体水平上，分析显示父母和子女的反应无显著差异。当出现不一致时，父母更有可能比子女报告更低的一般 HRQOL（19-35%）和更高的特定于 EA 的 HRQOL（17-33%）。二元逻辑回归分析的结果表明，患儿的年龄、性别和国家（德国与瑞典）是特定于 EA 的 HRQOL 亲子一致性的显著预测因素。我们没有发现任何可以解释一般 HRQOL 一致性的显著变量。
亲子一致性总体较好，这表明父母报告是可靠的信息来源。然而，可能会出现差异，并且可以通过患儿的年龄、性别和国家（瑞典与德国）来解释。这两个视角都是治疗 EA 患者的重要信息来源，不应被视为正确或错误。相反，这些信息拓宽了对儿科 EA 患者的认识。
