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.
Karen J EaglesonMiranda CampbellBronagh McAlindenHelen HeusslerSusan PagelKerri-Lyn WebbChristian StockerNelson AlphonsoRobert N JustoPublished in: Journal of paediatrics and child health (2020)
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.
Keyphrases
- healthcare
- congenital heart disease
- public health
- mental health
- young adults
- health information
- study protocol
- minimally invasive
- quality improvement
- palliative care
- primary care
- randomized controlled trial
- emergency department
- clinical practice
- health promotion
- human health
- risk assessment
- social media
- left ventricular
- acute coronary syndrome
- single cell
- coronary artery bypass