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Neurodevelopmental follow-up care pathways and processes for children with congenital heart disease in Australia
Bridget Abell1, David Rodwell2,3, Karen J Eagleson4,5
1Australian Centre for Health Services Innovation and Centre for Healthcare Transformation, School of Public Health and Social Work, Faculty of Health, Queensland University of Technology, Brisbane, QLD, Australia. bridget.abell@qut.edu.au.
Insights
Neurodevelopmental follow-up for Australian children with congenital heart disease (CHD) primarily uses existing health services. Care coordination needs improvement for optimal outcomes and national standard implementation.
Area of Science:
- Pediatric Cardiology
- Developmental Pediatrics
- Health Services Research
Background:
- International guidelines recommend neurodevelopmental follow-up for children with congenital heart disease (CHD) to enable early intervention for developmental delays.
- Implementation of these follow-up care pathways in Australia is not well-documented.
- This study investigated the current landscape of services and care pathways for neurodevelopmental follow-up of Australian children with CHD.
Purpose of the Study:
- To identify and categorize the care pathways and services utilized for neurodevelopmental follow-up of Australian children with CHD.
- To understand how these services are accessed and coordinated.
- To inform future strategies for optimizing neurodevelopmental care for this population.
Main Methods:
- A qualitative study design was employed.
- Semi-structured virtual interviews were conducted with 52 healthcare professionals across Australia involved in the neurodevelopmental care of children with CHD.
- Data analysis utilized a rapid qualitative approach, including structured templates, data reduction, and inductive-deductive analysis of matrices.
Main Results:
- Neurodevelopmental follow-up predominantly occurs through existing healthcare services, not solely through specialized cardiac programs.
- Service availability and accessibility demonstrate significant variation across Australia.
- Commonly accessed components include community-based primary care, pediatric clinics, child development services, neonatal follow-up, and allied health providers.
- A notable finding was the reported lack of formal structures for coordinating these care pathways.
Conclusions:
- Cardiac neurodevelopmental follow-up in Australia is effectively embedded within existing service structures and can be adapted to local contexts.
- Leveraging and expanding current services is crucial, though new models may be necessary.
- Enhanced systematic coordination of care pathways is essential for optimizing service delivery, strategic planning, and implementing national standards.
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.
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