Congenital Heart Disease Long-term Improvement in Functional hEalth (CHD LIFE): A partnership programme to improve the long-term functional health of children with congenital heart disease in Queensland.

Abstract

Children who undergo open-heart surgery in the first year of life for congenital heart disease (CHD) are at high-risk for impaired development across multiple domains. International recommendations include systematic periodic developmental surveillance into adolescence and the establishment of long-term follow-up programmes. This article describes the establishment and evolution of the Queensland Paediatric Cardiac Service neurodevelopmental follow-up programme - CHD LIFE (Long-term Improvement in Functional hEalth). Contextualising best practice recommendations to ensure a family-centred and sustainable approach to understand and support the long-term functional health needs of high-risk children with CHD as standard care was needed. We describe the transition from a centralised pilot Programme to the implementation of an integrated statewide approach aimed at delivering consistent high-level standards of care and a platform to evaluate therapeutic interventions.

Journal

Journal ID (iso-abbrev): J Paediatr Child Health

Title: Journal of paediatrics and child health

Publisher: Wiley

ISSN (Electronic): 1440-1754

ISSN (Print): 1034-4810

Publication date (Electronic): July 2020

Volume: 56

Issue: 7

Affiliations

[1 ] Queensland Children's Hospital, Children's Health Queensland, Brisbane, Queensland, Australia.

[2 ] Faculty of Medicine, University of Queensland, Brisbane, Queensland, Australia.

[3 ] Clinical Excellence Division, Queensland Health, Brisbane, Queensland, Australia.

Article

DOI: 10.1111/jpc.14935

PubMed ID: 32627252

SO-VID: 33c45f54-fff4-4b50-ac1d-a461e7dec822