National Strategic Action Plan for Childhood Heart Disease

Objectives

The National Strategic Action Plan for Childhood Heart Disease 2019, Beyond the Heart: Transforming Care, seeks to reduce the impact of congenital and acquired childhood heart disease in Australia and enable affected people to live longer, healthier and more productive lives through effective management across the life course. It promotes lifelong, holistic, person-centred and family-centred care, recognising that many people require complex specialist support from diagnosis through adulthood.[1][2][3][4]

• Establish national standards of care and clinical practice guidelines covering prevention, diagnosis, treatment, in-home care and end-of-life care, with consistent pathways across Australia.[5][6]
• Organise action around three priorities: management, care and support; supportive communities; and research, delivered through seven focus areas covering standards of care, infrastructure, awareness and education, neurodevelopmental and mental healthcare, priority populations, research priorities and surveillance.[2][7]
• Improve continuity of specialised care from birth to adulthood, particularly at transition from paediatric to adult cardiac services, and address fragmented care, gaps in adult congenital heart disease services and workforce shortages.[5][8][9]
• Integrate neurodevelopmental and mental healthcare into core congenital heart disease care, with early intervention, continuing surveillance and support for patients, parents, carers and siblings.[10][11]
• Reduce inequities affecting Aboriginal and Torres Strait Islander people, adolescents and young adults, and people in rural, regional and remote communities through culturally safe, accessible and flexible services.[4][12][13]
• Strengthen awareness, reliable information, peer and community support, self-management and informed decision-making for people with congenital heart disease, families and carers.[4][14][15]
• Build research and surveillance evidence on causes, epidemiology, lifelong clinical and psychosocial outcomes, treatment, exercise, service access and the direct and indirect economic burden of congenital heart disease.[9][16][17]

Implementation

Implementation is intended as a nationally coordinated, partnership-based programme led by HeartKids Ltd, developed with Australian Government Department of Health funding and informed by clinicians, researchers, people living with childhood heart disease, parents, carers, policymakers and community members. It aligns with the National Strategic Framework for Chronic Conditions and related national priorities, while placing affected people and families at the centre of shared responsibility across governments, health services, education, researchers, industry, insurers and community organisations.[18][2][19][7]

• Establish a congenital heart disease taskforce comprising clinicians, researchers, consumers and policy-makers, including Australian, state and territory government representatives, to oversee standards, guideline priorities, workforce and infrastructure planning, and Action Plan implementation.[5][6]
• Define multidisciplinary service models, care pathways across primary, secondary, tertiary and community settings, workforce requirements, equipment needs, training expectations, communication resources and reporting requirements.[6][20][21]
• Develop a national infrastructure plan, expand specialist centres and workforce capacity, strengthen primary care, use telehealth and digital health systems, and improve information sharing through tools including My Health Record.[8][22][23]
• Use a hub-and-spoke model for adult congenital heart disease services, with comprehensive central centres for moderate to severe disease and regional centres for milder disease; the plan identifies five designated comprehensive centres and estimates a need for at least 12.5.[8]
• Provide accessible information and support through telephone, face-to-face and digital channels, including the 1800 HeartKids service, web-based education, peer-support teams, youth initiatives, community campaigns and guidance for schools, workplaces and other non-health settings.[15][24]
• Develop standards and pilot pathways for mental health and neurodevelopmental care, including family-centred services close to home and a long-term developmental care pathway based on the Queensland Paediatric Cardiac Service model.[11]
• Fund and deploy jurisdictional cardiac coordinators, cardiac sonographers, portable echocardiography equipment and transition nurses; expand specialist outreach and use telehealth or telemedicine where appropriate.[13][9]
• Support Aboriginal and Torres Strait Islander people to lead and partner in the planning, design, evaluation and implementation of locally responsive services, and provide coordinated transition support for young people and their families.[12]
• Implement the Congenital Heart Alliance of Australia and New Zealand registry, harmonise condition-specific registries, establish a lifelong national cohort, and use surveys, stakeholder focus groups and economic analysis to inform research, service planning and evaluation.[25][26][17][27]
• Monitor performance through standards containing patient-satisfaction, clinical-outcome and information-reporting measures, supported by registry and survey data, annual report cards and economic impact reports in years one, three and five after release. Detailed quantitative targets and reporting responsibilities beyond taskforce oversight are not specified.[6][17][27]

Monitoring & Evaluation

The Action Plan proposes a national monitoring, evaluation and surveillance architecture to assess implementation, care quality, outcomes and the lifelong burden of congenital heart disease (CHD). It combines national standards, registries, surveys, research cohorts, stakeholder input and economic analysis, although many operational details, including quantified targets and reporting responsibilities, remain unspecified.[6][16][17][27]

• Include patient-satisfaction measures, clinical-outcome measures and information-reporting requirements within national CHD standards of care.[6]
• Maintain standards through ongoing surveillance, review and periodic updating, with the CHD taskforce monitoring and evaluating Action Plan progress and implementation.[6]
• Benchmark service and workforce performance against standards to support more consistent, sustainable and higher-quality care, including outcomes relating to quality of life, physical health, mental health, wellbeing and neurodevelopment.[5]
• Monitor neurodevelopment across the life course through surveillance, screening, assessment and evaluation, particularly for children undergoing cardiac surgery before 12 months of age, transplant recipients and survivors of extracorporeal life support.[11]
• Assess progress against intended outcomes including improved mental health, cognitive outcomes and quality of life, reduced loss to follow-up during transition to adult services, and reduced disparities affecting Aboriginal and Torres Strait Islander people and people living outside metropolitan areas.[10][12][8]
• Develop and implement a national registry through the Congenital Heart Alliance of Australia and New Zealand to capture babies born with CHD, follow their care journeys, track variation in conditions, treatment and outcomes, identify people at risk of loss to follow-up, and support service-capacity planning and clinical-trial recruitment.[26][17][28]
• Establish a national prospective cohort of neonates diagnosed with CHD and follow participants indefinitely, linking prenatal and postnatal characteristics with medical, social, psychological and economic outcomes to inform best practice.[25]
• Collect patient- and family-reported outcomes through integrated digital platforms to inform shared clinical decision-making.[22]
• Evaluate genetic testing and counselling, including the clinical and psychological value of accredited sequencing and whether whole genome sequencing complements current care pathways and enables risk definition and individualised care.[29]
• Measure research impact with consumers involved in setting priorities and assessing benefits for people with CHD and the wider CHD community.[16]
• Use the registry, an annual national CHD survey, stakeholder focus groups, economic-burden reports and external data sources to evaluate Action Plan effects over time.[17][27]
• Publish an annual report card and prepare economic impact reports in years one, three and five after the Action Plan’s release.[17][27]

The material identifies surveillance as a dedicated focus area and recognises a national data gap, but it does not specify a complete set of numerical indicators, baselines, targets, evaluation methods, reporting frequency or formal accountability arrangements beyond taskforce oversight, standards review and performance benchmarking.[7][5][6]

Costing & Financing

The Action Plan identifies substantial resource needs across specialist care, workforce capacity, outreach, digital systems, research and family support. Childhood heart disease is described as imposing direct and indirect costs on patients and families, the healthcare system, education, workforce participation and the broader economy; however, the supplied material provides no overall budget, monetary allocation, financing target or quantified funding gap.[4][30][31][28]

• Resource the CHD taskforce and address gaps between defined standards and current practice through models of care, clinical guidelines, workforce planning and infrastructure planning.[6]
• Invest in multidisciplinary staff, specialist centres, facilities, services, equipment, family-support infrastructure, training and certification, particularly for adult CHD services and regional, rural, remote and Aboriginal and Torres Strait Islander communities.[32][8][22]
• Expand digital health, telehealth, information-sharing systems and platforms for patient- and family-reported outcomes.[22][12]
• Fund community and peer support, telephone and web-based information services, youth projects, culturally appropriate resources, awareness campaigns and professional support.[15][24]
• Provide coordinator, sonographer and transition-nurse roles, portable echocardiography equipment, specialist outreach and travel and accommodation assistance to reduce access barriers and out-of-pocket costs.[13][9]
• Continue investment in the national registry, annual national CHD survey, economic-burden study and research addressing genetic risk, mental health, neurodevelopment, treatment outcomes and cost-effectiveness of early interventions.[25][27][28]
• Use Rural Health Outreach Fund and Bonded Programs investments to help direct medically trained professionals towards regional, rural and remote areas, while recognising the continuing need for additional specialist-trained staff.[32]

The source notes that CHD services are severely under-resourced, including dedicated facilities, family support and adult-centre capacity, and that patients and families can face substantial travel and accommodation costs.[8]It also calls for a consensus model of CHD’s direct and indirect economic burden, updated every two years, and for a framework assessing the cost-effectiveness of early neurodevelopmental and mental-health interventions.[25][27]Development of the Action Plan was funded by the Australian Government Department of Health, but no amount is provided.[18][27]