The National Rheumatic Heart Disease Data Collection includes information about diagnoses of rheumatic heart disease (RHD) recorded in Queensland, Western Australia, South Australia, Northern Territory and New South Wales (reported separately). The total number of RHD diagnoses recorded is dependent on each state and territory’s reporting practices, both historically and presently. The commencement year of each register varies, and RHD has become notifiable at different times in each jurisdiction (refer to Table 1).
A person can only have one diagnosis of RHD, though they may be registered in more than one jurisdiction as they can receive care in different places. For the purpose of the national data collection, each diagnosis was assigned to only one jurisdiction, based on their location for primary health care at the time the data were submitted.
Rheumatic heart disease (RHD) occurs when the heart valves are damaged during episodes of acute rheumatic fever (ARF). The risk of progression from ARF to RHD (damage of heart valves) is very high in the first year after the first ARF episode, and decreases thereafter. Researchers in Northern Territory found that the cumulative incidence of progression to RHD was 27% at 1 year, 44% at 5 years, and 52% at 10 years (He et. al. 2016).
As at 31 December 2019, there were 5,385 (prevalence rate of 56 per 100,000 population) people living with RHD recorded on registers recorded in Queensland, Western Australia, South Australia and the Northern Territory. Of these:
- 81% were Indigenous Australians (4,337 diagnoses, 955 per 100,000 population)
- 29% were aged under 25 (1,558 diagnoses)—with 3 aged under 5
- 66% were female (3,561 diagnoses)
- Northern Territory had the highest prevalence (2,308 diagnoses, 938 per 100,000).
Of those RHD diagnoses with severity status recorded for their most recent evaluation, 41% had mild disease (2,206 diagnoses), while 33% had severe disease (1,532).
Older people were more likely to have severe RHD, with 42% aged 45 or over having severe disease (777 diagnoses), compared to 15% of those aged 5–14 (65 diagnoses).