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

  • Katie A. Fritz
  • Ayman Y. Khmour
  • Krista Kitzerow
  • Thomas T. Sato
  • Mir A. Basir
Original Article
  • 17 Downloads

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.

Keywords

Birth defect Quality of life Special education Family impact 

Notes

Funding

Department of Pediatrics, Medical College of Wisconsin.

Compliance with ethical standards

Conflict of interest

All authors have no conflict of interest relevant to this article to disclose.

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Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  • Katie A. Fritz
    • 1
  • Ayman Y. Khmour
    • 2
  • Krista Kitzerow
    • 3
  • Thomas T. Sato
    • 3
  • Mir A. Basir
    • 1
  1. 1.Suite CCC-410, Department of PediatricsMedical College of WisconsinMilwaukeeUSA
  2. 2.Department of PediatricsChildren’s Mercy HospitalKansas CityUSA
  3. 3.Department of SurgeryMedical College of WisconsinMilwaukeeUSA

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