Applying a clinical service re design methodology to establish a statewide model of care to support the developmental needs of children with congenital heart disease following early open heart surgery

Abstract

Background: Each year 100 Queensland infants with congenital heart disease (CHD) require open-heart surgery before 12 months of age, increasing their risk of poor neurodevelopmental outcomes. Developmental surveillance is recommended for infants following neonatal open-heart surgery to mitigate risk through early intervention. The Queensland Paediatric Cardiac Service (QPCS) Neurodevelopmental Follow-up Program offers robust developmental screening limited to specific high-risk cohorts and centralised to the quaternary hospital, posing challenges within a large geographical state. This project aims to establish a holistic, statewide approach to optimising developmental outcomes of Queensland children with CHD. Methods: A collaborative partnership was established between QPCS and the Queensland Child and Youth Clinical Network to maximise statewide engagement and project outcomes. Funding was provided by the Healthcare Improvement Unit. Partnership with Innovation Change and Redesign Excellence program (iCARE) enabled application of a robust, clinical service re-design methodology, including collaboration with three hospital and health services (HHSs), and executive endorsement. Stakeholder consultation, including consumer engagement, throughout the planning and diagnostic phases established the platform from which solution and implementation phases could launch. Results: Over 60% of infants who undergo open-heart surgery in the first 12 months of life live outside the Brisbane metropolitan area, with few linked into local supports and services. Consultation with consumers and services providing developmental supports identified barriers to optimising the developmental outcomes of this cohort. Key themes identified during the diagnostic phase include; improving communication processes, empowering parents, information and resource sharing, capability building within services, and the need for centralised data collection. Conclusions: Application of this methodology has enabled rigorous planning and effective stakeholder engagement across partner sites, ensuring contextualised project outcomes that meet the needs of families within each HHS. It is anticipated that this methodology will support application of project outcomes across other Queensland HHSs, and to the broader CHD population.L6200774872018-01-09 <br />