ArticleOrphanet journal of rare diseases2021
Parent-child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia: a Swedish-German cross-sectional study.
Article in Orphanet journal of rare diseases, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
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Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The International Network on Oesophageal Atresia (INoEA) consensus guidelines on the transition of patients with oesophageal atresia-tracheoesophageal fistula.Nature reviews. Gastroenterology & hepatology · 2023Guideline
- Psychosocial burden in pediatric familial mediterranean fever: A study of quality of life, sleep habits, maternal mental health, and clinical correlates.BMC psychology · 2026Article
- Health-related quality of life in 205 children with arthrogryposis multiplex congenita.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Coping and quality of life of parents of children with achondroplasia-a narrative review.Frontiers in medicine · 2025Review
- Disease-specific quality of life as part of the long-term follow-up for children born with esophageal atresia in an academic unit in South Africa-a pilot study.Diseases of the esophagus : official journal of the International Society for Diseases of the Esophagus · 2024Article
- A Narrative Review of Patient-Reported Outcome Measures and Their Application in Recent Pediatric Surgical Research: Advancing Knowledge and Offering New Perspectives to the Field.European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie · 2024Review
- Health-related quality of life among adolescents with type 1 diabetes since the second wave of the COVID-19 pandemic in Germany.Family medicine and community health · 2023Article
- Health-related quality of life and patient-reported outcome measurements in patients with cystinosis.JIMD reports · 2023Article
- Health-related quality of life in children after surgical repair of esophageal atresia: a cross-sectional study in China.Frontiers in pediatrics · 2023Article
- Health-related quality of life in children with Hirschsprung disease and children with functional constipation: Parent-child variability.Journal of pediatric surgery · 2022Review
- Postoperative morbidity and health-related quality of life in children with delayed reconstruction of esophageal atresia: a nationwide Swedish study.Orphanet journal of rare diseases · 2022Article
- Factors of family impact in a Swedish-German cohort of children born with esophageal atresia.Orphanet journal of rare diseases · 2022Article
- Health-related quality of life in Italian children and adolescents with congenital heart diseases.BMC cardiovascular disorders · 2022Article
- Parent-Child Assessment of Strengths and Difficulties of German Children and Adolescents Born With Esophageal Atresia.Frontiers in pediatrics · 2021Article
Corrections and comments
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Authors and funding
12 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe 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.
methodsWe 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.
resultsOn 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.
conclusionThe 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.
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