Acute rheumatic fever and rheumatic heart disease in Australia

Rheumatic heart disease in Queensland, Western Australia, South Australia and the Northern Territory

As New South Wales uses different inclusion criteria, it is not comparable to the other 4 jurisdictions and so results for New South Wales are shown separately at the end of this chapter.

Rheumatic heart disease is more common in First Nations people

At 31 December 2024, 7,510 people were recorded as having RHD on registers in Queensland, Western Australia, South Australia, and the Northern Territory (Supplementary table 4.1b). Of these:

• 78% (5,867) were First Nations people
• most non-Indigenous Australians were not from a high-risk country of origin (Supplementary table 4.4)
• about 28% (2,071) were under 25 years old (Supplementary table 4.1b)
• 66% were female (Figure 4.1; Supplementary table 4.1b)
• the Northern Territory (almost 1,100 patients per 100,000 population) and Remote and very remote areas (over 1,100 patients per 100,000 population) had the highest prevalence rates (figures 4.2 and 4.3; Supplementary tables 4.2 and 4.3)
• there was a higher prevalence rate among young and middle-aged groups, with the highest prevalence observed in the 15–24 age group (109 cases per 100,000 population). (Supplementary table 4.1b).

The prevalence of RHD increased for First Nations people and all Australians over time (Figure 4.4; Supplementary tables 4.5a and 4.5b). 

Rheumatic heart disease priority status at most recent assessment

A person's priority status (Table 4.1) determines the recommended care plan to meet their medical and personal needs. This status may change over time as their condition and needs change. Priority definitions changed from the 2012 guidelines to the 2020 guidelines. Some people now require ongoing management that was not previously recommended. Both definitions are explained in Table 4.1. The time of application of these changes may vary between jurisdictions.

Priority 1 is assigned to people at greatest risk of disease recurrence/exacerbation and requires the most frequent follow up. Priority 4 is assigned to people with the lowest risk disease and involves the least frequent follow up.

Note: Priority definitions have changed in the new guidelines released in 2025, but these data were collected using the 2020 definitions. Source: Adapted from The Australian guideline for prevention, diagnosis and management of acute rheumatic fever and rheumatic heart disease 2020.

At the end of 2024, of the 5,867 First Nations people diagnosed with RHD and living in Queensland, Western Australia, South Australia or the Northern Territory, 4,465 (76%) had a priority status recorded at their most recent evaluation. Of these, 24% (1,087 people) were priority 1, 23% (1,010) were priority 2, 42% (1,875) were priority 3, and 11% (492) were priority 4 (Supplementary table 4.6).

Newly diagnosed rheumatic heart disease

In this report, a ‘new’ RHD diagnosis (incidence) is defined as one that was newly diagnosed in the relevant year. In most cases, it is not possible to identify a year of onset for RHD as the condition may be asymptomatic initially. The analysis is based on year of diagnosis.

In Queensland, Western Australia, South Australia and the Northern Territory:

• there were 410 reports of new RHD diagnoses in 2024
• about 73% (299 cases) of new RHD diagnoses were among First Nations people (Supplementary table 4.9)
• one-third of new RHD was diagnosed in children under 15 (118 or 40% of First Nations cases and 135 or 33% of cases in all Australians) (Figures 4.5a and 4.5b; Supplementary tables 4.7a and 4.7b)
• around two-thirds of new cases were diagnosed in females (188 or 63% of First Nations cases and 265 or 65% of cases in all Australians) (Supplementary tables 4.7a and 4.7b)
• the Northern Territory had the highest diagnosis rate among First Nations people and all Australians (180 diagnoses per 100,000 population and 56 diagnoses per 100,000 population, respectively) (Figure 4.6; Supplementary tables 4.8)
• for all Australians, diagnosis rates increased significantly between 2016 and 2018 from 3.7 to 5.5 diagnoses per 100,000 population and then decreased significantly to 3.9 diagnoses per 100,000 population in 2024 (Figure 4.7; Supplementary table 4.10b)
• for First Nations people, the rate fluctuated between a low of 50.9 diagnoses per 100,000 population in 2016 and a high of 80.1 diagnoses per 100,000 population in 2018. The rate has been declining for the past few years, and decreased significantly from 76.8 diagnosis per 100,000 population in 2020 to 54.1 diagnoses per 100,000 population in 2024 (Figure 4.7; Supplementary table 4.10a). 

Severity of rheumatic heart disease is recorded at the time of diagnosis

Severity is collected at the time of diagnosis and can be categorised as severe, moderate, mild, or borderline, as determined by a specialist. Table 4.2 lists the definitions of each status. In reports published prior to 2023, severity and priority were combined to reflect the patient’s status and that was called severity. As such, previous reports do not have comparable data related to severity. Borderline RHD data were not available from some registers and the further availability of this category is to be determined by the new Australian RHD clinical guidelines.

AR = Aortic regurgitation

LA = left atrium

LV = left ventricle

MS = mitral stenosis

MR = mitral regurgitation

MV = mitral valve

Source: Adapted from Table 10.2 in The Australian guideline for prevention, diagnosis and management of acute rheumatic fever and rheumatic heart disease

In 2024, of the 299 First Nations people with severity recorded at a new RHD diagnosis in Qld, WA, SA or NT:

• 41% (122 people) had mild RHD
• 30% (89 people) had moderate RHD
• 19% (56 people) had severe RHD (Supplementary table 4.11).

No previous documented acute rheumatic fever

Rheumatic heart disease (RHD) occurs only in someone who has had acute rheumatic fever (ARF). Timely and accurate diagnosis of ARF is critical to reducing the risk of RHD as it will allow sufficient time for secondary prophylaxis to be effective. This also relies on timely diagnosis and treatment of Strep A infections.

Among the 299 First Nations people with a new RHD diagnosis in 2024, 79.3% (237 people) did not have a previous ARF episode recorded on the registers or were diagnosed with RHD within 90 days of their first recorded ARF episode (Supplementary table 4.12). This shows that in many cases, RHD might have been prevented by secondary prophylaxis, if ARF had been diagnosed and secondary prophylaxis commenced. 

ARF might not be recorded on a register for various reasons, such as:

• being diagnosed before the relevant register began
• being diagnosed prior to the condition being notifiable
• the person being diagnosed in a jurisdiction that does not have a register
• the episode was never diagnosed.

Surgery among First Nations people with rheumatic heart disease in Queensland, Western Australia, South Australia and the Northern Territory

RHD leads to structural damage to the heart valves – most commonly the mitral valve. The aortic and tricuspid valves, and, rarely, the pulmonary valve, can also be affected. Surgery may be needed to replace or repair valves. Surgery may include prolonged hospitalisation, isolation from family, and ongoing regular monitoring. A person may have surgical events more than once on damaged valves and may have multiple procedures in one surgical event – that is, multiple valves repaired or replaced in a single surgery.

These figures reflect only those surgeries that were recorded in the registers and may not include all RHD-related surgery undertaken. However, comparison with data from the National Hospital Morbidity Database suggests that most RHD surgeries among First Nations people in Queensland, Western Australia, South Australia, and the Northern Territory are recorded on the registers (AIHW unpublished analysis). New South Wales was not included in this analysis.

In 2024, 146 people recorded on one of the registries in Queensland, Western Australia, South Australia, or the Northern Territory had surgery. Of those, 111 people were First Nations people who underwent 115 surgical events (Supplementary table 4.13). Of these First Nations people:

• 68% were female (Supplementary table 4.13)
• on average, people had their first surgery 4 years after RHD diagnosis (Supplementary table 4.14).

In 2024, of the 115 surgical events for First Nations people:

• those aged 45 and over had the most surgical events (40), followed by those aged 25–34 (28)
• 12 surgical events for RHD took place in children aged under 15 years (Figure 4.8; Supplementary table 4.13)