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Development and pilot-testing of a condition-specific instrument to assess the quality-of-life in children and adolescents born with esophageal atresia.

Journal article
Authors Michaela Dellenmark-Blom
Kate Abrahamsson
J H Quitmann
R Sommer
S Witt
J Dingemann
S Flieder
Linus Jönsson
V Gatzinsky
M Bullinger
B M Ure
C Dingemann
John Chaplin
Published in Diseases of the esophagus : official journal of the International Society for Diseases of the Esophagus
Volume 30
Issue 7
Pages 1-9
ISSN 1442-2050
Publication year 2017
Published at
Pages 1-9
Language en
Links dx.doi.org/10.1093/dote/dox017
www.ncbi.nlm.nih.gov/entrez/query.f...
Subject categories Pediatrics

Abstract

The survival rate of children with esophageal atresia has today reached 95%. However, children are at risk of chronic morbidity related to esophageal and respiratory dysfunction, and associated anomalies. This study describes the pilot testing of a condition-specific health-related quality-of-life instrument for children with esophageal atresia in Sweden and Germany, using a patient-derived development approach consistent with international guidelines. Following a literature review, standardized focus groups were conducted with 30 Swedish families of children with esophageal atresia aged 2-17 years. The results were used for item generation of two age-specific pilot questionnaire versions. These were then translated from Swedish into German with considerations of linguistic and semantical perspectives. The 30-item pilot questionnaire for children aged 2-7 years was completed by 34 families (parent report), and the 50-item pilot questionnaire for children aged 8-17 years was completed by 52 families (51 child report, 52 parent report), with an overall response rate of 96% in the total sample. Based on predefined psychometric criteria, poorly performing items were removed, resulting in an 18-item version with three domains (Eating, Physical health and treatment, Social isolation and stress,) for children aged 2-7 years and a 26-item version with four domains (Eating, Social relationships, Body perception, and Health and well-being) for children aged 8-17 years. Both versions demonstrated good internal consistency reliability and acceptable convergent and known-groups validity for the total scores. The study identified specific health-related quality-of-life domains for pediatric patients with esophageal atresia, highlighting issues that are important for follow-up care. After field testing in a larger patient sample, this instrument can be used to enhance the evaluation of pediatric surgical care.

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