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Health-related quality of life in children born with congenital diaphragmatic hernia
Karolinska Institutet / Karolinska University Hospital, Astrid Lindgren Children’s Hospital.
Karolinska Institutet / Karolinska University Hospital, Astrid Lindgren Children’s Hospital.
The Swedish Red Cross University College, Department of Health Sciences.ORCID iD: 0000-0002-0221-8631
Karolinska Institutet / Karolinska University Hospital, Astrid Lindgren Children’s Hospital.
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2018 (English)In: Pediatric surgery international (Print), ISSN 0179-0358, E-ISSN 1437-9813, Vol. 34, no 4, p. 05-414Article in journal (Refereed) Published
Abstract [en]

PURPOSE: The aim of this study was to examine health-related quality of life (HRQoL) in children born with congenital diaphragmatic hernia (CDH).

METHODS: Between 1993 and 2003, a total of 102 children born with CDH were treated at Astrid Lindgren Children's hospital in Stockholm. In 2012, long-term survivors (n = 77) were asked to participate in the present study, which resulted in a 46% (n = 35) response rate. The KIDSCREEN-52 questionnaire was used for measuring HRQoL and a detailed review of medical records was performed.

RESULTS: The study participants did not differ from the non-participants in terms of prenatal diagnosis, gender, side of lesion, method of surgical repair, time to intubation, need for ECMO support, or way of discharge from the hospital. Children born with CDH considered themselves to have a good HRQoL, as good as healthy Swedish children. There were only a few significant HRQoL differences within the group of children with CDH, although several median scores in ECMO-treated patients were somewhat lower. Correlations between child and parent scores on HRQoL were low.

CONCLUSIONS: Health-related quality of life in children born with CDH is good overall, however, a correlation between the severity of the malformation and HRQoL cannot be excluded.

Place, publisher, year, edition, pages
2018. Vol. 34, no 4, p. 05-414
Keywords [en]
Congenital diaphragmatic hernia, Extracorporeal membrane oxygenation., Health-related quality of life, Long-term follow-up
National Category
Nursing
Identifiers
URN: urn:nbn:se:rkh:diva-2559DOI: 10.1007/s00383-018-4237-1PubMedID: 29453581OAI: oai:DiVA.org:rkh-2559DiVA, id: diva2:1184904
Note

This study was supported by Grants from the Frimurare Barnhuset Foundation, The Clas Groschinsky Memorial Fund, and HRH Crown Princess Lovisa’s Foundation.

Available from: 2018-02-22 Created: 2018-02-22 Last updated: 2018-03-29Bibliographically approved

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