Long-term outcomes and quality of life in congenital diaphragmatic hernia survivors treated with extracorporeal life support: A cross-sectional survey
File version
Author(s)
Alphonso, N
Ren, C
Jardine, L
Johnson, KE
Venugopal, P
McBride, CA
Griffith University Author(s)
Primary Supervisor
Other Supervisors
Editor(s)
Date
Size
File type(s)
Location
License
Abstract
Aim Few reports have shown Quality-of-Life long-term outcomes in children with congenital diaphragmatic hernia (CDH) who received extracorporeal membrane oxygenation (ECMO) support. We reviewed the short- and long-term outcomes in CDH patients that were supported with ECMO during their neonatal treatment.
Methods Telephone interviews of parents of CDH children were performed. The Functional Status Scale (FSS) and the Paediatric Quality of Life Inventory (PedQL, Version 4.0) were completed with the parents. All children with a CDH and supported with ECMO from 2010 to 2023 were included in the study.
Results Twenty children were identified, with two having two ECMO runs. Birth weight was 3.2 kg (median). ECMO support lasted for (median) 13.6 days (range 3.8 to 39). Twelve patients were alive at the time of the survey. The age (median) at time of the interview was 6.3 years (range 1 to 12). The FSS score showed no impairment (FSS score 6) in any domain in eight patients. Two patients had a score of 7, and two patients had a score of 8 and 9, respectively. The PedQL showed a median score 84.5, with a physical health summary score of 92.5 and a psychosocial health summary score of 78.7. The cardiac specific PedQL inventory score was 77.
Conclusions ECMO support for CDH patients is associated with functional and Quality of Life outcomes that are similar to that in other PICU discharge populations. Denying ECMO support to CDH patients on the basis of predicted poor long-term outcomes does not appear to be justified.
Journal Title
Journal of Paediatrics and Child Health
Conference Title
Book Title
Edition
Volume
Issue
Thesis Type
Degree Program
School
Publisher link
Patent number
Funder(s)
Grant identifier(s)
Rights Statement
Rights Statement
Item Access Status
Note
This publication has been entered in Griffith Research Online as an advance online version.
Access the data
Related item(s)
Subject
Paediatrics
Persistent link to this record
Citation
Mattke, AC; Alphonso, N; Ren, C; Jardine, L; Johnson, KE; Venugopal, P; McBride, CA, Long-term outcomes and quality of life in congenital diaphragmatic hernia survivors treated with extracorporeal life support: A cross-sectional survey, Journal of Paediatrics and Child Health, 2024