Verlagslink DOI: 10.1186/s13023-021-01748-x
Titel: Parent-child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia : a Swedish-German cross-sectional study
Sprache: Englisch
Autorenschaft: Witt, Stefanie 
Dellenmark-Blom, Michaela 
Kuckuck, Susanne 
Dingemann, Jens 
Abrahamsson, Kate 
Dingemann, Carmen 
Chaplin, John Eric 
Ure, Benno 
Bullinger, Monika 
Gatzinsky, Vladimir 
Jönsson, Linus 
Quitmann, Julia Hannah  
Schlagwörter: Congenital malformation; Esophageal atresia; Health-relatedquality of life; Parent-child agreement; Rare disease
Erscheinungsdatum: 6-Mär-2021
Verlag: BioMed Central
Zeitschrift oder Schriftenreihe: Orphanet journal of rare diseases 
Zeitschriftenband: 16
Zusammenfassung: 
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.
URI: https://hdl.handle.net/20.500.12738/17209
ISSN: 1750-1172
Begutachtungsstatus: Diese Version hat ein Peer-Review-Verfahren durchlaufen (Peer Review)
Einrichtung: Universitätsklinikum Hamburg-Eppendorf 
Dokumenttyp: Zeitschriftenbeitrag
Hinweise zur Quelle: article number: 120 (2021)
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