Rheumatic Heart Disease Fact Sheet
Rheumatic Heart Disease (RHD) is a disease of poverty caused by Acute Rheumatic Fever (ARF). Rheumatic Fever is an illness that predominantly affects children, with the highest rates occurring in the 5-14 year age group. Rheumatic fever causes RHD and is the most common cause of cardiac mortality in children and adults aged less than 40 years this often disabling disease can cause mortality. RHD is the most common cause of childhood cardiovascular death and illness in the developing world. A minimum of 15 million people worldwide have the disease, resulting in 300,000 deaths each year.
The cause is a Streptococcal A infection.
RHD is difficult to detect in its early stages, however all children and adults who are suspected of having ARF should have an ultrasound of the heart, known as ‘echocardiography’. This test greatly enhances the chances of an accurate diagnosis.
Accurate diagnosis continues to be a problematic for health clinicians, where over-diagnosis results in unnecessary treatment over a long time, while underdiagnosis leads to further attacks of ARF, cardiac damage and premature death. Diagnosis remains a clinical decision, as there is no specific laboratory test.
The risk is increased with socioeconomic disadvantage such as overcrowding in housing, poor nutrition, poor household sanitation and wastewater management. RHD is preventable by improving living conditions and introducing effective measures of prevention and control. Often RHD is called the classic disease of social injustice.
These primary infrastructure related programs can be addressed in parallel with the medical education, intervention, prevention, support and research programs.
In Australia, this preventable disease has all but been eliminated in the non-Indigenous Australian population; however it persists within many rural and remote Aboriginal and Torres Strait Islander communities.
The symptoms and medical response:
RHD is the heart valve damage caused by acute rheumatic fever (ARF). ARF is caused by a particular streptococcal infection, usually the throat infection called ‘Strep Throat’. ARF develops in a small percentage of children 2-3 weeks following a Strep Throat. Common symptoms include fever and painful joints and these will often resolve by themselves until another bout. Other symptoms include uncontrollable jerky movements of the arms, legs and tongue (known as chorea, pronounced k-or-ea) and problems with the skin. If an episode of ARF is not correctly diagnosed and preventive treatment provided the patient can suffer significant heart damage. 1
Prevention programs may include regular screening of school children to detect the disease early, and to determine its prevalence. Other programs include establishing registers to track patients, and implementing education and health programs amongst health staff, patients and families, and the wider community to ensure ARF and RHD are correctly diagnosed and managed. Primary prevention can be achieved by addressing the underlying social and environmental determinants outlined above and the early treatment of Strep Throat. Secondary prevention typically involves the administration of penicillin injections every 3-4 weeks.
As RHD is not prevalent in wealthy countries, it is often overlooked by the medical fraternity, training institutions, and congresses. As penicillin is the mainstay of its prevention, there is no commercial interest to drive research for further attention to this disease. 1
1: World Heart Foundation 2009
The Australian Hotspots:
In 2002, the Northern Territory had the highest incidence of acute rheumatic fever (ARF) and RHD reported in the world. 2 RHD prevalence occurred with 13–17 cases per 1000 Aboriginal people of all ages, compared with less than two cases per 1000 non-Indigenous people living in the same region.*
Indigenous people are up to eight times more likely than non-Indigenous Australians to be hospitalised for ARF and RHD, and nearly 20 times as likely to die. Forty-five per cent of Indigenous people receiving heart valve surgery for RHD are aged less than 25 years, compared with only 4% of non-Indigenous Australians.3
2. Malcolm McDonald NT Disease Control Bulletin Vol.10, No.2, June 2003
3 Jonathan R Carapetis, Alex Brown, Nigel J Wilson and Keith N Edwards Med J Aust 2007; 186 (11): 581-586.
As is the case in developing countries, the champions of RHD in Australia need to collaborate and become engaged to control RHD. This coordinated approach requires commitment with professional organisations, health agencies, research providers, relevant Non-Government organisations (such as HeartKids), media, improved infrastructure in communities and community grassroots involvement.
What can be done?
- Improve water and sanitation infrastructure within communities including upgraded water and operational sewerage systems, and landfill management
- Functional water services, sanitation and waste disposal within Aboriginal houses
- Establish and maintain health clinics within communities.
- Improve information and educational resources on reducing the incidence of ARF/ RHD.
2. Building health system capacity:
- Systematic screening and diagnosis of children in schools and communities
- Further development of database of known and suspected ARF/ RHD patients
- Patient follow-up to ensure adherence to treatment
- Training of health workers to diagnose ARF and RHD
- Standardisation of care by health professionals and workers.
3. Increasing Research:
- Accelerating clinical trials for vaccines
- Improving secondary treatment with new approaches towards new antibiotics and administration of antibiotics
- Pathogenic assessment on genetic susceptibility and organism determinants
- Development and evaluation of low cost echocardiographic screening and diagnosis
- Monitoring the quality of penicillin supplies.
4. Improving access to medical and surgical services:
- Reinforcing local and regional health facilities for initial treatment
- Improving the accessibility of medical and surgical care available for serious RHD cases
- Focusing on developing low cost and sustainable medical care and social support (e.g. accommodation, translation services, counseling, social services, and transport).
What is the Australian Government doing?
$2.5 million in funds has been provided towards RHD Australia to provide cost effective measures to help combat Rheumatic Heart Disease and Acute Rheumatic Fever.
A national database is being developed to support a register and control program that will initially start in the NT, WA and Queensland, and will provide training of health staff to improve diagnosis, and help patients, access regular antibiotics to prevent recurrence. Information is being developed to provide practical, simple measures for patients and to make the public more aware of the disease.
What is Heart Kids Australia doing?
HeartKids Australia has been involved preventing RHD through greater awareness, advocacy research and support.
The following provides a list of HKA initiatives:
1. Development of the report “Childhood Heart Disease in Australia” by Sandra Leggat 2011. This report recommended:
- Enhancing services for children, adolescents and adults such as screening services, access to allied health services and support for parents.
- Development of a register to track clinical outcomes and provide valid data for planning of future service needs
- Development of designated care hubs with the required level of qualified staff and appropriate facilities
- Development of functional performance indicators for heart disease outcomes
- Targeted health care initiatives and action plans for rheumatic heart disease including support for infants and children with CHD.
- More equitable coverage of travel and accommodation costs for families required to travel to the designated CHD specialist centre
- Expansion of HeartKids family support services for regional areas and develop appropriate national support structure for families with CHD
- HeartKids works with Aboriginal and Torres Strait Island communities to advise the Commonwealth Government on how to provide family and health care support to Heartkids and families in these communities
- HeartKids works with hospitals, specialist clinicians, the National Health & Medical Research Council and the National Institute of Clinical studies to develop, test, publish and disseminate relevant information,
2. Research and applied funding:
- Marc Remond, James Cook University, Cairns: ‘Sharing Success-improving secondary prophylaxis for rheumatic fever in Indigenous Australian children’ through the Heart Kids inaugural research “Grants-in-Aid” program (March 2012).
- Project gECHO through a partnership with Kiwanis International Australian District Incorporated Charity. Project gECHO provided much needed funds for the detection and treatment of Indigenous people with RHD. This funding included $50,000 for a database and $40,000 to the Menzies School of Health, and the Australian and New Zealand Congenital Heart Disease Research Centre in 2008, and an additional $5,000 in 2010.
3. Regional HeartKids support groups. HeartKids has an Australia- wide network of regional support groups that can provide informed support and resources to assist families and children affected by CHD. This regional representation provides local support for patients and families, social activities, and fundraising activities. Some groups are collaborating with research, medical and Indigenous organisations to build and provide information for patients, families and health care workers in remote areas.
4. State based HeartKids organisations are providing information packs and travel assistance to regional and sometimes remote communities, when requested. Indigenous people in remote communities also require ‘easy to understand’ information about the importance of follow-up treatment and the support available in capital city and regional hospitals.
5. HeartKids provides support through its Family Support Coordinators located in each paediatric hospital throughout Australia. This support includes food vouchers, clothing (particularly those coming from warmer climates) and accommodation. Family Support Coordinators are often present at Paediatric Cardiology Clinic Days in major regional Hospitals.
6. Information provision through the HeartKids Australia website, newsletters, Facebook and information provided through the Family Support Coordinators.