National Strategic Action Plan for Childhood Heart Disease

Objectives

The National Strategic Action Plan for Childhood Heart Disease 2019 seeks to reduce the impact of childhood heart disease and enable people with congenital and acquired heart disease to live longer, healthier and more productive lives through effective, lifelong management. It promotes a nationally coordinated, holistic, person-centred and family-centred system spanning diagnosis, treatment, follow-up, transition to adult services and end-of-life care.[1][2][3]The plan recognises effects on people living with heart disease, families and carers, health and education services, employment and the wider economy.[1][4]

• Deliver action through three strategic priorities: management, care and support; supportive communities; and research.[2][5]
• Advance seven focus areas: standards of care, infrastructure, awareness and education, neurodevelopmental and mental healthcare, priority populations, research priorities, and surveillance.[2][5]
• Establish national standards of care and clinical practice guidelines covering the complete care pathway, including prevention, diagnosis, treatment, home-based care, transition and end-of-life care.[3]
• Ensure continuity of specialised care from birth through adolescence and adulthood, supported by adequate workforce capacity, facilities, services, technology and equipment.[6][7]
• Improve physical, mental, neurodevelopmental and psychosocial outcomes, quality of life, earlier intervention and support for parents, carers and siblings.[7][8][9]
• Reduce inequities affecting Aboriginal and Torres Strait Islander people, people in regional, rural and remote areas, and adolescents and young adults transitioning from paediatric to adult care.[2][7][10][11]
• Strengthen awareness, health literacy, evidence-based information, peer support and inclusive communities in order to reduce discrimination and improve support throughout the life course.[12][13][14]
• Generate evidence on genetic and environmental causes, prenatal and postnatal influences, treatment, exercise, mental health, neurodevelopment, disease burden and economic impacts.[15][16][17][18]
• Establish comprehensive surveillance and registry-based evidence to support whole-of-life care, service planning, clinical improvement and assessment of Action Plan impacts.[19][20][18]

Implementation

Implementation combines national standards and guidelines, coordinated specialist services, community support, workforce and infrastructure development, research partnerships, and surveillance.[21][22]The plan was developed through consultation involving clinicians, researchers, people living with childhood heart disease, parents and carers, policymakers and community members, and its development was led by HeartKids Ltd with Australian Government Department of Health funding.[1][2]Delivery is intended to align with the National Strategic Framework for Chronic Conditions, the Rheumatic Fever Strategy, Aboriginal and Torres Strait Islander health commitments, clinical quality registry strategy, workforce development and the Rural Health Outreach Fund.[23]

• Establish a congenital heart disease taskforce of clinicians, researchers, consumers and policymakers, including Australian, state and territory government representatives, to oversee national standards, guideline priorities, workforce and infrastructure planning, and Action Plan progress.[24][3]
• Use standards to define service organisation, models of care, pathways across primary, secondary and tertiary services and community settings, workforce and resource requirements, communication, training, certification, reporting and patient satisfaction and clinical outcome measures.[3]
• Adopt a hub-and-spoke model in which centralised adult congenital heart centres manage moderate to severe disease and regional centres provide care for milder disease.[7]
• Strengthen multidisciplinary teams and specialist services, particularly adult congenital heart disease services, and assess workforce and infrastructure gaps against national standards to determine investment priorities.[6][25]
• Fund and deploy a minimum of 6.5 full-time equivalent cardiac coordinators, 4.5 full-time equivalent cardiac sonographers, 12 full-time equivalent transition nurses and eight portable echocardiography machines.[11][15]
• Expand specialist outreach, portable echocardiography, telehealth, digital health and My Health Record-enabled information sharing to improve access for regional, rural and remote communities.[11][25]
• Develop culturally safe services with Aboriginal and Torres Strait Islander people, including their involvement in planning, design, implementation and evaluation, alongside locally appropriate information and workforce capability.[13][10]
• Provide individualised transition support, pilot evidence-based transition models and work with primary care and emergency departments to identify young adults lost to follow-up.[10][15]
• Fund telephone, face-to-face and digital information services, including expansion of the 1800 HeartKids service; develop a web-based education portal; and establish hospital- and community-based peer support teams.[13]
• Develop national mental healthcare and neurodevelopmental standards, pilot long-term developmental care pathways and support ongoing screening, surveillance, assessment and early intervention.[9]
• Build partnerships among people with congenital heart disease and families, governments, health and education sectors, advocacy organisations, researchers, industry and service providers, with shared responsibility according to partners’ roles and capacity.[5]
• Accelerate the Congenital Heart Alliance of Australia and New Zealand National Congenital Heart Disease Registry, harmonise condition-specific registries, establish a national neonatal cohort and conduct an annual national survey.[17][20][26]
• Monitor implementation through registry and survey data, stakeholder focus groups, economic burden reporting and an annual report card developed by HeartKids, the taskforce and key stakeholders.[18][26]

Monitoring & Evaluation

The Action Plan proposes a national monitoring architecture centred on standards of care, surveillance, registries, surveys, patient-reported outcomes and periodic reporting to assess implementation, service quality, health outcomes and the wider burden of congenital heart disease (CHD).[24][19][18][26]

• Establish the CHD taskforce to monitor and evaluate Action Plan progress and implementation, while overseeing development of national CHD standards of care.[3][24]
• Use service and workforce standards to benchmark performance, promote consistently high-quality and sustainable care, and identify infrastructure and workforce gaps against national standards.[24][25]
• Include patient satisfaction and clinical outcome measures in information-reporting requirements for standards of care.[3]
• Review and update standards periodically, supported by ongoing surveillance, to maintain their relevance, currency and connection with related standards.[3]
• Monitor neurodevelopmental outcomes through developmental surveillance, screening and assessment at recommended ages, recognising that impairments may emerge over time.[9]
• Use national mental healthcare and neurodevelopmental care standards to assess service quality, early intervention, diagnosis, management and long-term outcomes.[9]
• Evaluate culturally appropriate and locally responsive services with Aboriginal and Torres Strait Islander people, including efforts to reduce disparities and loss to follow-up.[10]
• Capture patient- and family-reported outcomes through integrated digital platforms to inform shared clinical decision-making and care.[25]
• Evaluate specialist outreach services and fund identified gaps, including services for remote Aboriginal communities, to address geographical barriers to care.[11]
• Develop an ongoing monitoring and surveillance model that uses evidence to inform clinical standards, hospital and health planning, workforce planning and patient outcomes.[19]
• Establish a national cohort of neonates with CHD for indefinite follow-up and researcher access to linked medical, social, psychological and economic data.[17]
• Accelerate the Congenital Heart Alliance of Australia and New Zealand National Congenital Heart Disease Registry, harmonise condition-specific registries and use registry data to track care, treatment and outcomes across the life course.[20]
• Use registry information to measure disease burden, assess needs, identify people at risk of loss to follow-up, support systems planning and evaluate interventions.[20]
• Fund an annual national CHD survey and use registry data, surveys, stakeholder focus groups, economic reports and external data sources to assess Action Plan impacts.[18][26]
• Measure changes in the economic and productivity burden in years one, three and five after report release, and update the economic-burden report every two years.[18][26]
• Produce an annual Action Plan report card under an evaluation framework developed by HeartKids, the CHD taskforce and key stakeholders.[26]

Detailed quantitative indicators, targets, reporting templates, formal reporting schedules, independent evaluation arrangements and accountability sanctions are not specified, beyond the proposed standards, registry and survey arrangements, evaluation framework and annual report card.[3][9][26]

Costing & Financing

The Action Plan identifies substantial resource pressures and calls for investment in specialised CHD workforce, infrastructure, outreach, transition support, digital systems, community services, research and surveillance, but it provides no total implementation budget or monetary funding gap.[6][7][11][26]

• Address under-resourced CHD infrastructure, shortages of specialist-trained professionals, and gaps in facilities, services and equipment, particularly for adult CHD care, regional, rural and remote communities, and Aboriginal and Torres Strait Islander people.[6]
• Invest in dedicated facilities, family support, telehealth, digital health, information-sharing systems, multidisciplinary teams and forward infrastructure planning for emerging treatments such as personalised medicine.[7][25]
• Fund fellowships, workforce education and training, cardiac coordinators, cardiac sonographers, portable echocardiography equipment, specialist outreach and transition nurses.[27][11][15]
• Provide a minimum workforce of 6.5 full-time equivalent cardiac coordinators, 4.5 full-time equivalent cardiac sonographers and 12 full-time equivalent transition nurses, alongside eight portable echocardiography machines.[11][15]
• Increase travel and accommodation assistance to reduce families’ out-of-pocket costs, recognising that patients and families face major travel and accommodation expenses and that inadequate family facilities and service capacity can contribute to surgery cancellations.[7][15]
• Fund telephone, face-to-face and digital information services, peer-support teams, youth projects, camps, awareness campaigns and culturally appropriate resources.[13][14]
• Maintain investment in the CHD registry, annual national CHD survey and economic-burden reporting to support surveillance and evaluation.[26]
• Assess direct and indirect CHD costs, including healthcare expenditure and productivity losses, and collect economic information on the experience and impact of CHD for individuals, families, services and the wider economy.[17][26][28]

Development of the Action Plan received Australian Government Department of Health funding, reported as 2018 in one section and 2019 in another.[26][1]Existing investments through the Rural Health Outreach Fund and Bonded Programs are noted, but their amounts are not specified.[6]No budget, funding allocation, financing envelope, quantified funding gap, cost estimate, resource-mobilisation target or economic assumption is specified.[11][15][26]