first known or recurrent cases of acute rheumatic fever were identified in QLD, WA, SA and the NT combined, 95% (1,963) of which were in Aboriginal and Torres Strait Islander people, during 2014–2018
people had a diagnosis of rheumatic heart disease (RHD) recorded on registers in Qld, WA, SA and the NT as at December 2018, of whom 87% (4,325) were Indigenous Australians
Indigenous Australians were hospitalised for ARF or RHD at 6 times the rate for non‑Indigenous Australians (77 and 13 per 100,000 respectively) between July 2015 and June 2017
Why is it important?
Australia has one of the highest recorded rates of acute rheumatic fever (ARF) and rheumatic heart disease (RHD) in the world. ARF most commonly occurs during childhood, adolescence, and young adulthood. ARF is an inflammatory illness caused by an autoimmune reaction to a throat or skin Group A Streptococcus (GAS) bacterial infection, such as that following impetigo and scabies. These skin infections are likely to have a direct or indirect role in the development of ARF and RHD (RHDAustralia (ARF/RHD writing group) 2020). Scabies is a skin condition caused by infestation of microscopic mites which results in an itchy rash, and the scratching of affected areas may result in a GAS bacterial infection of the skin (impetigo) (Romani et al. 2017). Scabies is common in many remote communities (Northern Territory Government 2020).
ARF symptoms can include arthritis, fever, swelling of the heart and heart valves, and rash (Ralph 2020). RHD is permanent damage to the valves of the heart caused by one or repeated episodes of ARF. One episode of ARF increases the risk of repeated episodes, which can increase the risk of RHD. Following diagnosis of ARF, patients require long-term treatment and follow-up, including long-term intramuscular antibiotic prophylaxis to avoid further infections that could damage the heart (RHDAustralia (ARF/RHD writing group) 2020) (AIHW 2013). Heart surgery can be required to repair heart valve damage resulting from RHD.
ARF and RHD are associated with social and environmental factors such as poverty, overcrowded housing and poor functioning of ‘health hardware’ such as facilities for washing people, clothes and bedding (Ali et al. 2018). They are now rare diseases in populations with good living conditions and timely access to effective medical care (DoH 2017; He et al. 2016). However, ARF and RHD are far more likely to occur among Aboriginal and Torres Strait Islander people living in remote communities where there are higher rates of overcrowded or poorly functioning housing. While socioeconomic disadvantage and barriers to accessing health care persist, reducing the occurrence of ARF and RHD will remain a challenge.
Under the Rheumatic Fever Strategy (RFS), the Australian Government provides funding to support RHD control programs and data collection in Queensland, Western Australia, South Australia and the Northern Territory. This measure presents information from the National Rheumatic Heart Disease data collection, collated from the ARF and RHD registers in these four jurisdictions. An RHD control program and register operates in New South Wales, but is not covered under the RFS and is not part of the National RHD data collection, and the data it produces are not comparable to the collection.
Burden of disease
RHD accounted for 5.1% of the cardiovascular disease burden for Indigenous Australians in 2011 (84% of this burden attributed to RHD was fatal). Indigenous females experienced the majority of the disease burden due to RHD (61%) compared with Indigenous males (39%). The rate of disability-adjusted life years (DALY) for RHD for Indigenous Australians was 6.6 times the rate for non-Indigenous Australians. This represented the largest relative difference between the two populations for cardiovascular diseases (AIHW 2016).
Acute rheumatic fever
Over the period 2014–2018, there were 2,076 new (first known episode) or recurrent cases of ARF in Queensland, Western Australia, South Australia and the Northern Territory combined. Of these cases, 95% (1,963) were for Indigenous Australians and the remaining 113 cases were for Other Australians (Other Australians includes non‑Indigenous Australians and those whose Indigenous status is unknown) (Table D1.06.1).
The rate of ARF for Indigenous Australians was higher than the rate for Other Australians (89 per 100,000 compared with 0.3 per 100,000) for the four jurisdictions combined. Rates of ARF for Indigenous Australians were highest in the Northern Territory (292 per 100,000, or 1,085 cases), followed by Western Australia (70 per 100,000, or 354 cases), South Australia (43 per 100,000, or 90 cases) and lowest in Queensland (39 per 100,000, or 434 cases) (Table D1.06.1, Figure 1.06.1).
Figure 1.06.1: Acute rheumatic fever incidence in Indigenous Australians, by jurisdiction, Queensland, Western Australia, South Australia and the Northern Territory, 2014–2018
Based on 2014–2018 data from the four jurisdictions combined, ARF occurred mainly among Indigenous children, adolescents and young adults aged under 25. Around half (49%) of cases occurred in Indigenous children aged 5–14, and 24% were for those aged 15–24. The distribution of cases by age was similar for each of the four jurisdictions (Table D1.06.5, Figure 1.06.2).
Figure 1.06.2: Distribution of acute rheumatic fever diagnoses among Indigenous Australians, by age, Queensland, Western Australia, South Australia and the Northern Territory combined, 2014–2018
From 2010 to 2018, rates of ARF among Indigenous Australians increased from 83 per 100,000 to 106 per 100,000 for the three jurisdictions combined with data available for the period (Queensland, Western Australia and the Northern Territory). For the Northern Territory, the rate of ARF among Indigenous Australians tripled from 111 per 100,000 to 353 per 100,000 over the period. For Western Australia, rates of ARF among Indigenous Australians decreased, from 153 per 100,000 to 75 per 100,000 over the period (Table D1.06.6).
As at 31 December 2018, there had been 4,993 diagnoses of RHD reported in Queensland, Western Australia, South Australia and the Northern Territory combined. Of these cases, 4,325 (87%) were for Indigenous Australians and the remaining 668 cases were for Other Australians (Table D1.06.11).
The proportion of diagnoses of RHD for Indigenous females was twice the proportion for Indigenous males in the three jurisdictions with data available by sex (68% for South Australia, 66% for the Northern Territory and 65% for Queensland) (Table D1.06.7, Table D1.06.9, Table D1.06.10).
The prevalence rate for RHD among Indigenous Australians was 948 per 100,000, higher than the rate for Other Australians (7.3 per 100,000), for the four jurisdictions with data (Table D1.06.11). The rate for Indigenous Australians was highest for the Northern Territory—2,568 per 100,000 (1,967 cases), followed by 829 per 100,000 for Western Australia (869 cases), 572 per 100,000 for Queensland (1,322 cases) and lowest for South Australia at 379 per 100,000 (167 cases) (Tables D1.06.7, Table D1.06.8, Table D1.06.9, Table D1.06.10, Figure 1.06.3).
All jurisdictions with RHD registers have different notification and data collection practices and therefore the numbers, data quality and completeness in the RHD registers are variable. In addition, RHD became notifiable at different times in each jurisdiction: 2019 in the Northern Territory, 2018 in Queensland, 2016 in South Australia and 2015 in Western Australia. It is likely that data prior to RHD becoming notifiable underestimates the true disease burden (AIHW 2020).
Figure 1.06.3: Rheumatic heart disease prevalence in Indigenous Australians, by jurisdiction, Queensland, Western Australia, South Australia and the Northern Territory, as at 31 December 2018
When comparing the rates of RHD between populations, the prevalence rate for Indigenous Australians was higher than the rate for Other Australians in all four jurisdictions: 318 times the rate for Other Australians in Western Australia, 279 times in South Australia, 58 times in Queensland and 40 times in the Northern Territory (Table D1.06.7, Table D1.06.8, Table D1.06.9, Table D1.06.10).
There were 1,586 new RHD diagnoses in 2014–2018 and of those, 83% (1,314) were for Indigenous Australians (AIHW 2020). Over time, new registrations of RHD for Indigenous Australians in the four jurisdictions combined decreased slightly between 2012 and 2016, then increased from 51 to 73 per 100,000 between 2016 and 2018. Over the period of 2012 to 2018, the rate for new RHD diagnoses was consistently highest in the Northern Territory (Table D1.06.15, Figure 1.06.4).
Figure 1.06.4: Incidence of rheumatic heart disease notifications among Indigenous Australians, Queensland, Western Australia, South Australia and the Northern Territory, 2012 to 2018
Secondary prophylaxis treatment is the recommended regimen to prevent recurrences of ARF and progression of RHD. Receiving at least 80% of the scheduled doses is widely used as an indicator of adherence which is likely to protect against ARF recurrences (AIHW 2020). Adherence to secondary prophylaxis varied between jurisdictions in the 12 months to 31 December 2018. At least 80% of the required doses were received by:
- 63% (70) of Indigenous patients in South Australia,
- 53% (848) of Indigenous patients in the Northern Territory,
- 30% (291) of Indigenous patients in Queensland,
- 29% (152) of Indigenous patients in Western Australia (Table D1.06.16).
Between July 2015 and June 2017, 1,286 Indigenous Australians were hospitalised for ARF or RHD and the rate was 6.1 times that for non-Indigenous Australians (77 compared with 13 per 100,000 population, respectively). Hospitalisation rates for ARF or RHD for Indigenous Australians were lower in Non-remote areas (31 per 100,000), and higher in Remote areas (272 per 100,000).
Hospitalisation rates for ARF and RHD also varied by jurisdiction. Of the jurisdictions with published data, rates were lowest in New South Wales (14 per 100,000) and highest in the Northern Territory (404 per 100,000) (excludes Victoria, Tasmania and the Australian Capital Territory as the data was not published due to privacy or reliability reasons) (Table D1.06.17).
Hospitalisations for ARF or RHD were highest for Indigenous Australians aged 10–14 (166 per 100,000, or 288 hospitalisations). For non‑Indigenous Australians, rates of hospitalisation for ARF or RHD generally increased with age and were highest for those aged 65 and over (63 per 100,000) (Figure 1.06.2). Indigenous females were hospitalised for ARF or RHD at higher rates than Indigenous males (94 and 67 per 100,000, respectively) (Table D1.06.20, Figure 1.06.5).
Figure 1.06.5: Hospitalisations with a principal diagnosis of acute rheumatic fever or chronic rheumatic heart disease, by Indigenous status and age, Australia, July 2015 to June 2017
After adjusting for differences in the age structure between the two populations, Indigenous Australians were 58 times as likely as non-Indigenous Australians to be hospitalised for ARF (35 and 0.6 per 100,000, respectively) (Table D1.06.21). The hospitalisation rate for RHD was 3.6 times as high for Indigenous Australians as non-Indigenous Australians (43 compared with 12 per 100,000 population) (Table D1.06.22).
What do research and evaluations tell us?
A 2011 review of the worldwide incidence of ARF found it to be decreasing in all World Health Organization regions except the Americas and the Western Pacific (which includes Australia) (Seckeler & Hoke 2011). The review found that the reported prevalence of RHD was increasing in all Regions except Europe, and attributed this increase to improved diagnosis of RHD and increased survival due to advances in medical and surgical treatments. ARF and RHD rates in Australia have been shown to be higher than those in other developed countries, and among the highest in the world (AIHW 2013). Indigenous minority populations living in high-income countries continue to be affected by ARF and RHD (RHDAustralia (ARF/RHD writing group) 2020). Indigenous Australians, New Zealand Māoris and Pacific Islanders experience an inequitable burden of RHD.
The importance of primordial and primary prevention strategies to control and prevent ARF and RHD is underlined by multiple recent research studies. A 2018 systematic review concluded that environmental and social factors such as household crowding and low socioeconomic status were associated with increased risk of GAS infection, ARF and RHD (Coffey et al. 2018). May and others (2016) recommended preventive measures such as monitoring GAS diseases, the development of a GAS vaccine, long-acting penicillins, and noted the importance of improvements in social determinants for Indigenous Australians, along with better access to health care and improved housing (May et al. 2016).
The roll out of methods for the timely and appropriate treatment of GAS infections is a key step in eliminating ARF in Australia. Through conducting screening for GAS infections in school children in the remote Kimberley region, the importance of molecular point-of-care testing—which provides immediate and accurate results—was demonstrated (Pickering et al. 2020). The timely diagnosis of ‘Strep Throat’ allowed for rapid treatment and reduced spread of GAS infections, and reduced chance of an ARF episode. This is in contrast to traditional, laboratory-based diagnosis methods that take several days, which delays the delivery of health care in remote settings (Telethon Kids Institute 2020). Further, rapid treatment of skin infections which are endemic in remote tropical Australia would also contribute to reducing the high rates of ARF and RHD (May et al. 2016).
Secondary prevention and treatment of ARF/RHD are essential for people already living with ARF and/or RHD. This care is provided through the implementation of disease registers and control programs, education of patients and their families, treatment with penicillin prophylaxis, regular clinical review and access to specialists and hospital care (Chamberlain-Salaun J 2016).
People diagnosed with ARF should commence secondary prophylaxis as soon as possible after diagnosis. This can be challenging for many reasons. It was found that 76% of people diagnosed with RHD in the Northern Territory between 2014 and 2018 had no previous diagnosis of ARF (Hardie et al. 2020). The authors highlighted the need for enhanced cross-sectoral efforts in risk factor prevention and primary prevention, since the majority of people with RHD in the Northern Territory could not have received antibiotic prophylaxis to prevent progression to RHD.
A study in the Northern Territory found high rates of progression to RHD following the first year after ARF diagnosis, particularly among Indigenous Australians in Remote areas, and those with comorbidities (He et al. 2016). The recently updated clinical guidelines recommend that anyone suspected to have ARF should be admitted to a hospital within 24-72 hours for echocardiography and specialist review (RHDAustralia (ARF/RHD writing group) 2020). However this Northern Territory study showed that only 56.5% of patients were admitted to hospital for the treatment of ARF or RHD within 14 days of the onset of their first ARF episode. Early hospitalisation also facilitates exclusion of differential diagnosis, confirmation of the ARF diagnosis, beginning of penicillin and other ARF treatments, and education for the patient and their family about ARF/RHD. Although treatment for these ARF patients may have been initiated in primary care, these findings suggest delays might have contributed to the early onset or progression of heart valve damage. While secondary prophylaxis with penicillin is important for reducing ARF recurrence and the consequent worsening of heart valve damage, the high proportion of patients with RHD at or shortly after their first diagnosed ARF episode demonstrates the limitations of secondary prevention and the importance of primordial and primary preventive strategies. Development of complications is also more likely in the first year after diagnosis. This study also found residual disparities in Indigenous RHD survival after accounting for comorbidities (such as renal failure and alcohol use).
Patients on prophylaxis treatment need to receive 40% of scheduled doses of penicillin to benefit from being on treatment. A 2018 study found that for every 10% increase in adherence above this 40% benchmark, the odds of an ARF recurrence decreased by 17% (de Dassel et al. 2018). These results provide a rationale for a focus on ensuring clients receive at least 40% of their prescribed doses, with 80% or more of doses as an adherence target.
There are limited data about ways to improve adherence, and the findings are often highly specific to the study population (Rémond et al. 2016). Australian attempts to improve adherence have had limited success. The only randomized control trial was conducted between 2013 and 2016, and involved communities in the Northern Territory, where clinics received multicomponent intervention supporting activities to improve penicillin delivery (Ralph et al. 2018). The quality improvement and chronic care models intended to improve delivery of penicillin prophylaxis did not improve penicillin adherence. While use of incentives and removal of disincentives to receive penicillin injections were implemented, their impact on adherence was low because clients often lacked understanding of the value of the injections (Mitchell et al. 2018; Read et al. 2018). Impaired communication between health care providers and clients arose from differences in culture and language, and was compounded by high staff turnover (Read et al. 2018). The importance of multidisciplinary teams and patient-centred and culturally-appropriate care for maximising adherence has been recommended in recently updated clinical guidelines (RHDAustralia (ARF/RHD writing group) 2020).
It has been suggested that the introduction of specialist ARF/RHD nurse practitioners in Australia could help to improve service delivery and patient outcomes (RHD Australia 2015).
Diagnosis of all cases of ARF and RHD continues to be a challenge for the control and prevention strategies in place in Australia. Under diagnosis of RHD is well recognised. A recent study in Maningrida (in the Northern Territory) of echocardiographic screening among young Indigenous Australians aged 5–20 years, found there was a large burden of undiagnosed RHD in this group (Francis et al. 2020). While acknowledging that echocardiographic screening in remote communities can sometimes not be cost-effective, the authors recommended its use be considered in some remote communities where passive case finding for ARF and RHD might be inadequate. The study had a high participation rate (72%) which was attributed to its focus on education and health promotion in local languages, extensive community engagement and local leadership (Carapetis & Brown 2020).
Variable ascertainment of diagnosed cases in RHD Registers may reduce the usefulness of the RHD control program (McDonald et al. 2005), and skew the study of ARF and RHD, limiting the ability for the effect of interventions to be monitored and for trends to be detected. Linked administrative data was used to compare case ascertainment in ARF/RHD register records and hospital records from the Northern Territory, South Australia, Queensland and Western Australia (Agenson et al. 2020). Of the 5,824 records for Indigenous patients identified, 31% were present in the hospital data but absent from the registers data, and 26% were present in the registers data but absent from the hospitals data. There are differences between characteristics of cases in Registers compared to hospitals. The cases captured in the Register, as a proportion of all identified cases, are younger, more often Indigenous and more often reside in Northern Australia. It is likely that a focus on active case finding among high risk population groups from the RHD programs has resulted in the Registers capturing information about cases where prevention strategies will be most effective. Careful consideration of how elimination efforts will be affected by incomplete ascertainment of older, non-Indigenous and metropolitan based cases by RHD Registers is required, with commensurate actions associated with calls to strengthen Registers.
The role of Registers in the Australian context was affirmed in the 2017 Evaluation of the RFS (DoH 2017), conducted between October 2016 and December 2016. Streamlined governance and data systems were recommended as integral in assisting agency collaboration to deliver environmental prevention programs, which are fundamental to successful interventions (Link & Phelan 1995). It also found there was increased awareness in areas where ARF and RHD are prevalent, an increased number of people on the registers and prescribed prophylactic injections, and improvements in adherence to secondary prophylaxis, especially in the Northern Territory and South Australia, which assists in preventing disease progression (DoH 2017).
ARF and RHD are preventable diseases of disadvantage. Rates of ARF and RHD among Indigenous Australians are among the highest in the world and large disparities exist between Indigenous and other Australians (AIHW 2013). Interventions for preventing ARF and RHD should focus on improving housing, socioeconomic circumstances and health care. Provision of culturally appropriate education for communities on the causes of ARF and RHD and the health implications is needed. Early detection and management for individuals living with ARF and RHD are important for preventing recurrences, ensuring adherence to treatment, and preventing the impact of RHD.
RHD registers are a central element of secondary disease prevention programs to prevent recurrence of ARF and reduce the occurrence or severity of RHD through informing control programs, case detection and treatment compliance activities. The Australian RHD Registers contribute to improved case detection, and are the most effective way of improving compliance to treatment and supporting clinical follow-up of people with RHD. An indicator system to monitor secondary prophylaxis rates has been effectively utilised in the Northern Territory.
Interpretation of the differing trends in incidence of ARF and RHD across the jurisdictions requires caution. The data contained in the Registers is reliant on the completion of notifications of ARF and RHD diagnoses by health professionals. Improved case ascertainment in the Registers and improved accuracy of disease estimates would result in greater understanding of the epidemiology of ARF and RHD. Register data may be volatile between years, research has shown the potential for a large burden of undiagnosed cases, and comparisons across jurisdictions must be taken with caution when there are different notification and Registration practices. When they are functioning with complete and timely data, registers would have a role in monitoring the impact of interventions at each preventative stage.
Improving and maintaining high levels of secondary prophylaxis with regular penicillin injections is vital to preventing ARF recurrences and the development of RHD. However, despite ongoing efforts by patients and their families, primary health care providers and the control programs, rates of delivery of secondary prophylaxis in some settings remain inadequate. Improved engagement between health care services and Indigenous patients, and strategies to support adherence that are culturally appropriate and age appropriate are needed (Ralph et al. 2018). The use of social media, incentives, peer-support groups, innovative staff education and retention measures, and community support personnel employed to help people navigate the health care system, need to be developed and expanded. Targeted interventions, outreach programs, the use of local Indigenous Health Workers, education and health promotion in local languages, extensive community engagement and local leadership should be utilised in both primary and secondary prevention initiatives. Local approaches could also assist with addressing the personal factors that are potentially associated with poor compliance, such as pain caused by injections and injection refusal (AIHW 2019; Parnaby & Carapetis 2010).
ARF and RHD are uncommon diseases in most places in Australia, so many health professionals have poor awareness and knowledge about them, and the ongoing vigilance required, particularly regarding the long-term needs of patients. Health professionals commencing work in remote areas should undergo training to engender greater knowledge and awareness of ARF and RHD, and patients’ needs. Increasing awareness of ARF and RHD among health professionals, patients and their families and communities, is one of the aims for the Rheumatic Fever Strategy.
There are limitations to the impact secondary prevention can have when pursuing elimination of ARF and RHD in Australia. Primordial and primary prevention strategies which focus on upstream determinants of health (Cannon et al. 2019) remain vital and should be developed further and strengthened. For example, poor housing conditions such as overcrowding and poor functioning of ‘health hardware’ are conducive to the transmission and recurrence of infectious diseases such as scabies. For more on overcrowding see measure 2.01 Housing, and for more on ‘health hardware’ and the healthy living practices that enable households to manage infectious disease and environmental health risks see measure 2.02 Access to functional housing with utilities. Improved access to appropriate treatment for GAS infections such as throat and skin infections are also likely to reduce the rate of ARF (May et al. 2016).
The National Health and Medical Research Council (NHMRC) funds the End Rheumatic Heart Disease Centre of Research Excellence (END RHD CRE). The END RHD CRE has released The RHD Endgame Strategy: The blueprint to eliminate rheumatic heart disease in Australia by 2031. The END RHD CRE is a coalition of health and research organisations led by the Aboriginal Community Controlled Health Services sector. The strategy sets out the priorities needed to eliminate RHD including: for communities to develop their own culturally appropriate programs; primary prevention through healthy housing; establish a comprehensive skin and throat program for high-risk communities; and improving the health and wellbeing of those living with ARF and RHD (Wyber R et al. 2020). Community‐led action around addressing the social and environmental determinants of health is occurring under new research projects funded by the RFS (Wyatt 2018; Cannon et al. 2019).
The Australian Government is currently working with the states and territories to develop policy Roadmaps for RHD, ear and hearing health, eye health, and renal health. The Roadmaps will be high level frameworks to be used to guide policy, prioritisation, and planning decisions over the coming years.
The policy context is at Policies and strategies.
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- Rémond MG, Coyle ME, Mills JE & Maguire GP 2016. Approaches to improving adherence to secondary prophylaxis for rheumatic fever and rheumatic heart disease. Cardiology in Review 24:94‑8.
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- Romani L, Whitfeld MJ, Koroivueta J, Kama M, Wand H, Tikoduadua L et al. 2017. The epidemiology of scabies and impetigo in relation to demographic and residential characteristics: baseline findings from the skin health intervention Fiji trial. The American journal of tropical medicine and hygiene 97:845-50.
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Wyatt K 2018. Local Action Funded to Eliminate Rheumatic Heart Disease. The Hon Ken Wyatt AM, MP, Minister for Indigenous Health, Minister for Senior Australians and Aged Care.
- Wyber R, Noonan K, Halkon C, Enkel S, Ralph A, Bowen A et al. 2020. The RHD Endgame Strategy: The blueprint to eliminate rheumatic heart disease in Australia by 2031. Perth.