New South Wales: ARF and RHD facts

Introduction

In New South Wales, acute rheumatic fever (ARF) and rheumatic heart disease (RHD) are not common but are important public health issues as they cause serious illness and are preventable diseases. ARF and RHD disproportionately affect Aboriginal and Torres Strait Islander people, migrant communities, certain ethnic groups such as Māori or Pacific Islander people, and mainly impact children and young adults in NSW (NSW Health, 2018).

Although an RHD control program and register operates in New South Wales, this program is not currently covered under the Rheumatic Fever Strategy. The NSW register was established by the NSW Government in 2016, with ARF and RHD becoming notifiable in NSW in 2015. In NSW, RHD is notifiable only in persons aged under 35. This age group was targeted for prevention of worsening cardiac disease with secondary prophylaxis. As such, NSW data for RHD are not representative of the true burden of RHD in NSW (NSW RHD Program, unpublished).

For New South Wales, patients prescribed or administered secondary prophylaxis are only on the register if they have consented to being included.

Overview

At 31 December 2020, there were 163 people living with a diagnosis of ARF and/or RHD in New South Wales, representing 1.8% of the total 9,158 people recorded across all 5 jurisdictional registers. Of these 163 people in New South Wales, 65 people (40%) had only ARF recorded on the register, 64 people (39%) had only RHD recorded and 34 people (21%) had both ARF and RHD recorded (Supplementary Overview Table 1).

Unlike the other states and territories, New South Wales does not capture regional data and should be considered as a whole.

Acute rheumatic fever

In 2016–2020 in New South Wales:

• 80 diagnoses of ARF were recorded in 75 people (0.2 per 100,000 population over the 5 years combined) (Supplementary ARF tables 1 and 2)
• no clear trend over time was apparent, with the annual diagnosis rate varying from 0.2 to 0.3 per 100,000 population (Figure 3.1) (Supplementary ARF Table 2)

• most people diagnosed with ARF are non-Indigenous. Out of the 44 ARF diagnoses among non-Indigenous people, 21 were among Pacific Islander people (Supplementary ARF Table 3)
• the most common age at diagnosis was 5–14, with 42 diagnoses (0.9 per 100,000 population). Males accounted for 43 diagnoses (54%) (Figure 3.2) (Supplementary ARF Table 4a)

• 32 ARF episodes were diagnosed among Aboriginal and Torres Strait Islander people, a rate of 2.3 per 100,000 population (Supplementary ARF Table 2)

• for Indigenous Australians, no clear trend over time was apparent, with the annual diagnosis rate varying from 1.1 to 3.3 per 100,000 population (Figure 3.3) (Supplementary ARF Table 2)

• the highest rate of diagnosis for Indigenous Australians was among those aged 5–14, accounting for 50% of all diagnoses (5.2 per 100,000 population, or 16 diagnoses). Females and males each accounted for 50% of diagnoses (16 diagnoses) (Figure 3.4) (Supplementary ARF Table 4b)

• there were 16 recurrent ARF episodes recorded among all Australians (Supplementary ARF Table 7). 

Rheumatic heart disease

In New South Wales, only RHD diagnoses in people under 35 are notifiable.

Prevalence

At 31 December 2020, 98 people living with RHD were recorded on the New South Wales register (Supplementary RHD Table 1).

Incidence

In 2016–2020 in New South Wales:

• there were 58 reports of new RHD diagnoses (0.3 per 100,000 population). There was no clear trend in annual diagnosis rates, which varied from 0.1 to 0.5 per 100,000 population (Figure 4.1) (Supplementary RHD Table 4)

• there were more diagnoses of RHD in non-Indigenous Australians (42 diagnoses, 72%) than Indigenous Australians (15 diagnoses, 26%). Pacific Islander people made up 28% of all new RHD diagnoses (Supplementary RHD Table 3a)
• 15 new RHD diagnoses among Indigenous Australians were reported to the jurisdictional register (1.6 per 100,000 population) (Supplementary RHD tables 3a)
• the rate of diagnosis for Indigenous Australians aged 15−34 was 1.5 times that of those aged under 15 (Figure 4.2) (Supplementary RHD Table 3b).

Indigenous Australians with no documented previous ARF episode

RHD occurs only in someone who has had ARF, but some people with RHD have no recorded previous ARF episode on state and territory registers. ARF might not be notified to 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 in a jurisdiction that does not have a register; or the episode never being diagnosed.

Among Indigenous Australians in New South Wales with a new RHD diagnosis in 2016–2020, 13 (87%) did not have a previous ARF episode recorded on the registers, noting that any ARF diagnoses prior to 2015 are not included on the register. There were too few cases to identify patterns with sex, age, or year (Supplementary RHD Table 5).

Heart surgery for RHD

In 2016–2020 in New South Wales, 12 people underwent 16 RHD surgical events. Due to small numbers, further analysis by Indigenous status could not be published (Supplementary RHD Table 6).

Secondary prophylaxis

Delivery of secondary prophylaxis

In 2020, 30 Indigenous Australians were prescribed a treatment regimen to prevent recurrences of ARF, and progression to RHD, involving regular intramuscular injections of BPG every 21 or 28 days and consented to inclusion on the register (Supplementary Secondary Prophylaxis Table 1). 30% (9 people) received at least 1 dose recorded in the register (Supplementary Secondary Prophylaxis Table 2).

ARF recurrence rate among people on BPG

In 2020, among 30 Indigenous Australians who were prescribed BPG, there were fewer than 5 reported ARF recurrences.