The more severe condition of HLV is associated with poorer HRQOL in some domains and has greater impact on parental HRQOL and family functioning.

The Fontan circulation describes the circulatory state resulting from an operation in congenital heart disease where systemic venous return is directed to the lungs without an intervening active pumping chamber. As survival increases, so too does recognition of the potential health challenges. This document aims to allow clinicians, people with a Fontan circulation, and their families to benefit from consensus agreement about management of the person with a Fontan circulation. The document was crafted with input from a multidisciplinary group of health care providers as well as individuals with a Fontan circulation and families. It is hoped that the shared common vision of long-term wellbeing will continue to drive improvements in care and quality of life in this patient population and eventually translate into improved survival.

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.