Establishing a statewide approach to support the developmental needs of children with congenital heart disease following early open heart surgery

Infants with congenital heart disease (CHD) requiring open-heart surgery before 12 months are known to have an increased risk of poor neurodevelopmental outcomes. The Queensland Paediatric Cardiac Service (QPCS) has partnered with the Queensland Child and Youth Clinical Network (QCYCN) to establish a contemporary, integrated, statewide approach to meeting the developmental needs of these children. Timeline: two year project scheduled for completion December 2017. Aim: To establish a sustainable practice framework that meets the developmental support needs of CHD children and their families in partnership with services across the state and across the continuum of care. Target population: Children with CHD who had open-heart surgery as infants and who reside in Brisbane, Ipswich, or Cairns regions Highlights: The QPCS-QCYCN partnership maximised statewide engagement and project outcomes. Partnership with the Innovation Change and Redesign Excellence (iCARE) program enabled application of a robust clinical service re-design methodology. Engagement with consumers and stakeholders enabled contextualised solutions. Sustainability: Supported by executive endorsement, stakeholder engagement and localised solution planning. There is anticipated transferability to other clinical cohorts. Conclusion: A collaborative partnership and application of a clinical service re-design methodology has enabled rigorous planning and effective stakeholder and consumer engagement across partner sites. Key service re-design themes identified include; improve the co-ordination of care, integrate care along the continuum, activate caregivers, build local capability, and support service evaluation and improvement.