RHD control program and register in NSW

Data analysed for this report were provided directly to AIHW from the New South Wales (NSW) Rheumatic Heart Disease (RHD) register. This register is funded by NSW Health. ARF and RHD became notifiable in NSW in October 2015, and the register was established in May 2016, and captures patients notified with ARF and RHD where the individual provides consent to be incorporated into the register. Whilst RHD is only notifiable in persons under the age of 35 years, people older than 35 years may be included on the Register if is it is felt worthwhile by their health practitioner.

Due to the short duration of the NSW register’s existence, data on ARF and RHD notifications have been provided for 1 October 2015 to 31 December 2018. During this period the NSW register recorded 61 diagnoses of ARF and 52 diagnoses of RHD.

The data presented below are for the 3 full calendar years 2016–2018 only. Data for secondary prophylaxis were provided for 2018. The data for NSW are not comparable to the data provided by Qld, WA, SA and the NT, in the previous sections. 

ARF in NSW

In 2016–2018, there were 52 reported ARF diagnoses in NSW. Of these, 19 (37%) ARF diagnoses were reported among Aboriginal and Torres Strait Islander people, 16 (31%) diagnoses were in Pacific Islander people and 7 (13%) diagnoses were in people from other high risk groups. ARF rates were greater in males than females, and in 0–14 year olds compared to other age groups. Less than 10% of episodes were reported as recurrent ARF.

RHD in NSW

There are 52 known residents of NSW living with RHD who consented to be listed on the register as at December 2018,43 of these cases were diagnosed between 2016 and 2018. Of these newly diagnosed cases, 10 (23%) identified as Indigenous Australians, 17 (40%) identified as Pacific Islander people, and 4 (9%) were from other high risk groups. More than half (24) of cases were females and just over half (22) were aged 15–34 years.

Secondary prophylaxis in NSW

In NSW, secondary prophylaxis adherence has been calculated for all patients on the NSW register who were prescribed BPG during 2018. Adherence was calculated as a proportion of the scheduled 13 doses for patients on a 28-day BPG regime, and 17 doses for patients on a 21-day regime. Patients who commenced part-way through the year have been included with an adjusted expected number of doses. Patients who should have been on BPG but did not receive a dose in 2018 are also included in the data. 

There were 34 people in NSW prescribed secondary prophylaxis during 2018. Of these, 1 received 100% or more of their prescribed doses and a further 8 received 80–99% of their prescribed doses. Of all people prescribed secondary prophylaxis in 2018, 17 were Indigenous Australians.