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Pediatric Surgery International

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01-03-2019 | Original Article

Health-related quality of life, educational and family outcomes in survivors of congenital diaphragmatic hernia

Authors: Katie A. Fritz, Ayman Y. Khmour, Krista Kitzerow, Thomas T. Sato, Mir A. Basir

Published in: Pediatric Surgery International | Issue 3/2019

Abstract

Purpose

Congenital diaphragmatic hernia (CDH) survivors experience increased risk of medical and neurodevelopmental challenges. This study describes the health-related quality of life (HRQOL), special education utilization and the family impact among neonatal CDH survivors.

Methods

A single-center prospective cohort of CDH survivors born between 1995 and 2006 was followed. Parents completed the PedsQL HRQOL index and a Family Impact survey to assess the need for medical equipment, home health services, and special education and quantify the burden placed on the family by their child’s medical needs.

Results

Parents of 32 survivors participated at a mean survivor age of 8 ± 4 years. Many survivors utilized medical equipment (62%), home health services (18%) and special education (28%). CDH survivor HRQOL (79 ± 17) did not differ significantly from that of healthy children (83 ± 15, p = 0.12). HRQOL was diminished among survivors who required special education (67 ± 8 vs 82 ± 3; p = 0.04) and those reporting increased Family Impact score (p = 0.001).

Conclusion

Many CDH survivors continue to require home medical equipment and home health services at school age. Most survivors have normal parent-reported HRQOL; however, the need for special education and higher family impact of neonatal CDH correlates with decreased HRQOL.

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Title: Health-related quality of life, educational and family outcomes in survivors of congenital diaphragmatic hernia
Authors: Katie A. Fritz
Ayman Y. Khmour
Krista Kitzerow
Thomas T. Sato
Mir A. Basir
Publication date: 01-03-2019
Publisher: Springer Berlin Heidelberg
Published in: Pediatric Surgery International / Issue 3/2019
Print ISSN: 0179-0358
Electronic ISSN: 1437-9813
DOI: https://doi.org/10.1007/s00383-018-4414-2

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Health-related quality of life, educational and family outcomes in survivors of congenital diaphragmatic hernia

Abstract

Purpose

Methods

Results

Conclusion

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