Neurodevelopmental follow-up care pathways and processes for children with congenital heart disease in Australia

Abstract

Background International consensus exists for neurodevelopmental follow-up care of children with congenital heart disease (CHD) to support timely intervention for developmental delays. Yet, documentation of how this care is implemented in Australia is lacking. This study aimed to identify, categorise, and understand care pathways and services supporting neurodevelopmental follow-up of Australian children with CHD. Methods A qualitative study, using semi-structured virtual interviews with healthcare professionals across Australia involved in neurodevelopmental care of children with CHD (n = 52) was conducted. Data was analysed using a rapid qualitative approach including structured templates, data reduction, and inductive-deductive analysis of matrices to synthesise data. Results Most neurodevelopmental follow-up was delivered as pathways through existing healthcare services rather than centre-based cardiac programmes. Service availability and accessibility varied across the country. Community-based primary care services, paediatric clinics, child development services, neonatal follow-up programmes, and allied health providers were commonly accessed pathway components. However, participants reported a lack of formal structures to coordinate care pathways. Conclusions The study identifies how cardiac neurodevelopmental follow-up in Australia can be embedded into existing services and adapted to meet local needs and contexts. Future approaches will benefit from integrating, leveraging, and growing existing services, although adoption of new models may be needed. Impact This study found neurodevelopmental follow-up care for children with CHD in Australia to be delivered as pathways through existing services rather than the centre-based cardiac follow-up programmes common in North America. Our study describes alternate options, including providers in community settings, that can be used for follow-up care delivery and how these can adapted to local context. Future approaches will benefit from integrating, leveraging, and growing existing services, although adoption of new models may be needed. Greater systematic coordination of care pathways is still required to optimise service delivery, inform planning, and support implementation of national standards of care.