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      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.

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          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.

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          Author and article information

          Journal
          J Paediatr Child Health
          Journal of paediatrics and child health
          Wiley
          1440-1754
          1034-4810
          July 2020
          : 56
          : 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
          10.1111/jpc.14935
          32627252
          33c45f54-fff4-4b50-ac1d-a461e7dec822

          paediatric Cardiology,neurodevelopment,functional Health,community

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