Parent-child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia: a Swedish-German cross-sectional study

30 March 2021

Stefanie Witt 1Michaela Dellenmark-Blom 2Susanne Kuckuck 3Jens Dingemann 4Kate Abrahamsson 2 5Carmen Dingemann 4John Eric Chaplin 5Benno Ure 4Monika Bullinger 3Vladimir Gatzinsky 2Linus Jönsson 2Julia Hannah Quitmann 3

1Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 – W26, 20246, Hamburg, Germany. s.witt@uke.de.

2Department of Pediatric Surgery, Queen Silvia Children’s Hospital, Sahlgrenska University Hospital, Drottning Silvias Barn O Ungdomsjukh, Rondvägen 10, 41685, Göteborg, Sweden.

3Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistraße 52 – W26, 20246, Hamburg, Germany.

4Department of Pediatric Surgery, Hannover Medical School and Auf der Bult Children’s Hospital, Carl-Neuberg-Straße 1, 30625, Hannover, Germany.

5Institute of Clinical Sciences, Department of Pediatrics, Gothenburg University, The Queen Silvia Children’s Hospital, 41686, Gothenburg, Sweden.

 

Abstract

Background: 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.

Methods: 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.

Results: 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.

Conclusion: 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.

Keywords: Congenital malformation; Esophageal atresia; Health-related quality of life; Parent–child agreement; Rare disease.

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