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 2017, ARF was notifiable to state health departments in five Australian jurisdictions (Qld, WA, SA, NT and New South Wales), while RHD was notifiable in three (NSW, WA and SA). 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. 

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 (NSW) in 2015, but data are not available for this report. Data about ARF and RHD diagnoses are not 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, RHD cases are recorded on the Register are aged less than 50, 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, 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 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.