Long-term outcomes and quality of life in congenital diaphragmatic hernia survivors treated with extracorporeal life support: A cross-sectional survey.

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.