Are hospitalised acute rheumatic fever and rheumatic heart disease cases notified to the Western Australian Register in the Pilbara region? A retrospective review, 2016–2023

BACKGROUND: Acute rheumatic fever (ARF) and rheumatic heart disease (RHD) are prevalent among First Nations peoples in Australia. In Western Australia (WA), notification of ARF and RHD to the WA RHD register is mandatory and supports follow-up care. However, previous studies from rural WA have reported incomplete notification, suggesting gaps in surveillance and hospital-registry linkage. AIMS: To identify hospital admissions coded as ARF and/or RHD to northern WA's Pilbara region hospitals and validate their notification status to the WA RHD register. METHODS: A retrospective review of admission records from 1 January 2016 to 31 August 2023 was conducted across Pilbara region hospitals. Admission records coded to ARF and RHD in the study period were obtained and underwent clinical validation. The main outcome measure was the number of confirmed ARF and RHD cases notified to the WA RHD register. This was determined by cross-checking their notification status with the WA RHD register. Cases not previously recorded on the register were subsequently notified. RESULTS: Of the 171 records coded to ARF and RHD, 55 ARF and 32 RHD cases were confirmed. Three previously unnotified ARF/RHD cases were identified and notified to the WA RHD register, enabling appropriate follow-up care. CONCLUSIONS: A significantly higher proportion of ARF/RHD cases hospitalised in the Pilbara region were notified to the WA RHD register, compared to published data from other regions in rural WA. Record review improved case ascertainment and notification, underscoring the importance of strengthening hospital-to-registry links for surveillance accuracy, patient follow-up and continuity of care.