National Strategic Action Plan for Childhood Heart Disease
About the Action Plan:
The National Strategic Action Plan for Childhood Heart Disease 2019 - Beyond the Heart: Transforming Care (the Action Plan) aims to reduce the impact of childhood heart disease (CHD) in Australia and achieve the goal that people with CHD live longer, healthier and more productive lives through effective management of CHD across the life course.
CHD, which includes congenital heart disease and acquired heart disease, places a significant burden on the estimated 65,000 children and adults living with CHD (‘heart kids’) and their family members and carers.[i] The disease significantly impacts Australia’s healthcare system, educational institutions, the workforce and the broader economy. CHD is one of the leading causes of death and hospitalisation of infants.[ii] [iii] [iv] CHD is a chronic condition that, for many patients, requires complex, specialised care across the life course.[v]
CHD survival rates have improved dramatically due to medical advances. Most people with CHD now survive into adulthood, and currently adults living with CHD outnumber children with the disease.[vi] [vii] [viii] [ix] The longer survivorship of people with CHD means we must now look beyond childhood and consider whole-of-life care and the cost to patients, the health system, workforce and national economy.
Despite prevalence and its significant impact on individuals, families, the health system and society, there is a lack of awareness of CHD in the community and among health professionals. There is also a lack of evidenced-based information and support for individuals with CHD.
Some sub-populations of Australians with CHD are disproportionately impacted by the disease, specifically: Aboriginal and Torres Strait Islander people; adolescents and young adults aged 15-24 years who are transitioning from paediatric to adult cardiac health services; and people living in remote, or rural and regional locations.
This Action Plan is the first nationally-coordinated effort to tackle CHD. It has been developed through close collaboration and consultation with clinicians, researchers, ‘heart kids’, parents and carers of ‘heart kids’, policymakers and members of the community. The Action Plan provides direction and guidance to transform care so that it is lifelong, holistic, person-centred and family-centred.
The Action Plan presents a comprehensive overview of the Australian CHD landscape, identifying needs, emerging challenges, opportunities for the CHD community and a Framework for Action. Implementation of the Action Plan will deliver:
- the first ever Australian standards of care for CHD, including world first neurodevelopmental and mental health standards;
- more specialist CHD health professionals and specialist CHD centres to provide access to CHD-relevant health and allied health services and support for all Australians impacted by CHD irrespective of where they live;
- increased awareness of CHD and its unique challenges and improved access to information, support and resources for all people impacted by CHD;
- research evidence that will inform earlier interventions and improved therapies to reduce the burden of CHD on all those affected; and
- monitoring and surveillance of the implementation of the Action Plan to ensure benefit for those impacted by CHD and the wider community.
The Framework for Action (Appendix 1) shows the link between the three priorities, seven focus areas, 29 recommended actions and desired outcomes of the Action Plan.
The priorities and focus areas are:
- Management, care and support
- Focus Area 1: Standards of Care
- Focus Area 2: Infrastructure
- Supportive Communities
- Focus Area 3: Awareness and Education
- Focus Area 4: Neurodevelopmental and Mental Healthcare
- Focus Area 5: Priority Populations
- Focus Area 6: Research Priorities
- Focus Area 7: Surveillance
[i] CELERMAJER, D., STRANGE, G., CORDINA, R., SELBIE, L., SHOLLER, G., WINLAW, D., ALPHONSO, N., JUSTO, R., NICHOLAE, M., KASPARIAN, N., WEINTRAUB, R. G., CHEUNG, M., GRIGG, L. E., BRIZARD, C. P., WHEATON, G., DISNEY, P., STEWART, S., BULLOCK, A., RAMSAY, J., GENTLES, T. & D’UDEKEM, Y. (2016). "Congenital Heart Disease Requires a Lifetime Continuum of Care: A call for a Regional Registry." Heart, Lung and Circulation 25(8): 750-754.
[ii] AUSTRALIAN INSTITUTE OF HEALTH AND WELFARE (2017). "Heart, stroke & vascular diseases." Retrieved June 2018, from https://www.aihw.gov.au/reports-data/health-conditions-disability-deaths/heart-stroke-vascular-diseases/overview.
[iii] AUSTRALIAN INSTITUTE OF HEALTH AND WELFARE (2018). "Deaths in Australia." Retrieved June 2018, from https://www.aihw.gov.au/reports/life-expectancy-death/deaths-in-australia/contents/life-expectancy.
[iv] DAVIES, S., HOFER, A. & REEVE, C. (2014). "Mortality attributable to rheumatic heart disease in the Kimberley: a data linkage approach." Internal Medicine Journal 44: 1074-1080.
[v] CELERMAJER, D., STRANGE, G., CORDINA, R., SELBIE, L., SHOLLER, G., WINLAW, D., ALPHONSO, N., JUSTO, R., NICHOLAE, M., KASPARIAN, N., WEINTRAUB, R. G., CHEUNG, M., GRIGG, L. E., BRIZARD, C. P., WHEATON, G., DISNEY, P., STEWART, S., BULLOCK, A., RAMSAY, J., GENTLES, T. & D’UDEKEM, Y. (2016). "Congenital Heart Disease Requires a Lifetime Continuum of Care: A call for a Regional Registry." Heart, Lung and Circulation 25(8): 750-754.
[vi] KHAIRY, P., IONESCU-ITTU, R., MACKIE, A. S., ABRAHAMOWICZ, M., PILOTE, L. & MARELLI, A. (2010). "Changing mortality in congenital heart disease." Journal of the American College of Cardiology 56: 1149-1157.
[vii] LEGGAT, S. (2011). The 2011 Childhood Heart Disease in Australia White Paper. Childhood heart disease in Australia: Current Practices and Future Needs. A report for HeartKids and Paediatric and Congenital Council of the Cardiac Society of Australia and New Zealand. Pennant HIlls, NSW, Australia, HeartKids Australia.
[viii] LE GLOAN, L., MERCIER, L., DORE, A., MARCOTTE, F., IBRAHIM, R., MONGEON, F., ASGAR, A., MIRO, J., POIRIER, N. & KHAIRY, P. (2011). "Recent advances in adult congenital heart disease." Circulation 75: 2287-2295.
[ix] WINLAW, D. (2007). "Congenital heart disease in the 21st century." Critical Care and Resuscitation 9: 270-274.