Data quality statement

The National Rheumatic Heart Disease data collection, held by the AIHW, contains data on diagnoses of ARF and RHD in Australia. It is a collation of data from ARF/RHD clinical registers held by certain states and territories in which ARF and/or RHD are notifiable diseases. In 2019, ARF was notifiable to state health departments in five Australian jurisdictions (Qld, WA, SA, NT and NSW), while RHD was notifiable in four (NSW, WA and SA—became notifiable in Qld on the 01/09/2018). In NSW, RHD cases are only notifiable in people aged less than 35 years. Diagnoses of notifiable diseases are required by law to be reported to state and territory health authorities, to enable ongoing monitoring and support public health responses. 

This is the third annual report from the National RHD data collection. It presents information on ARF and RHD in Australia drawn from the established jurisdictional registers. Data in the collection are updated over time as the jurisdictional programs undertake data cleaning and quality improvement activity, so numbers in this report may not match those in previous reports. In addition, rates presented in this report have been calculated using the revised Aboriginal and Torres Strait Islander population estimates based on the 2016 Census (ABS 2019), and should not be compared with those in previously published reports.

In Queensland, Western Australia, South Australia and the Northern Territory, the ARF/RHD control programs are funded by the Australian Government Department of Health. A state-funded ARF/RHD register has commenced in New South Wales in 2016, with notifications starting in late 2015, but data are not available for the full period (2015–2019) included in this report. Data about ARF and RHD diagnoses are not currently collected by jurisdictional health departments in the Australian Capital Territory, Victoria or Tasmania.

The current NT RHD register has been collecting data since 1997. The SA RHD register commenced in 2012, the Qld RHD register commenced in 2009, as did the WA register. The Qld register incorporates information from 1999 onwards, when ARF became notifiable. For NT, the register incorporates information from a prior collection. All states have different notification and data collection practices and therefore the numbers, data quality and completion in the RHD registers are variable. In particular, in SA, only RHD cases aged less than 50 are recorded on the register, except when they are from a high-risk population group. For some jurisdictions, consent must be sought from a patient before they are included in the Register. Generally, notification and register data are maintained in separate systems and are not linked.

The registers include demographic and clinical information about people with ARF and/or RHD. Records are made of the first known ARF episode and recurrent episodes and diagnoses are classified as definite, probable or possible diagnoses. Data are collected about diagnoses’ preventive treatment and episode type, level of confirmation, level of severity and when clinical monitoring activities or surgery are performed.

While the registers have comprehensive data, gaps remain in the availability, quality and collection. Some key performance indicators on echocardiograms, ethnicity, detection methods, wait times for surgery and deaths due to surgery could not be reported due to poor data quality or variation in collection across state and territories. Risk factor information about people in the registers are not currently collected in any register. These data would assist in monitoring ARF and RHD epidemiology and program evaluation.