A Retrospective Linked Data Analysis of Acute Rheumatic Fever and Rheumatic Heart Disease Diagnoses in Children Aged Under Five Years in Australia, 2001–2017

ABSTRACT Objective To describe the clinical and demographic profile of Australian children first diagnosed with acute rheumatic fever (ARF) or rheumatic heart disease (RHD) before the age of 5 years, with comparison to children aged 5–14 years. Methods Linked emergency department, hospitalisation, RHD register and death records from the End RHD in Australia: Study of Epidemiology were used to identify first ARF/RHD diagnosis occurring in < 15‐year‐olds. Demographic/clinical profiles and pre‐diagnosis healthcare interactions were analysed with stratification into 5‐year age groups. Design Retrospective cross‐sectional linked administrative data analysis. Setting Northern Territory, South Australia, Queensland and Western Australia. Participants Children aged < 15 years at first hospitalisation or notification for ARF or RHD, 2001–2017. Main Outcome Measures Disease stage and severity at diagnosis, register notification status, clinical history prior to ARF or RHD diagnosis. Results Of 2382 children diagnosed with ARF/RHD aged < 15 years, 180 (7.6%) were aged under 5 years. Among under 5‐year‐olds with ARF or RHD, 30.6% had not been notified to RHD registers. A total 49 under 5‐year‐olds were diagnosed with RHD; with 22 (44.9%) classified as having mild disease, 16 (32.7%) moderate and 6 (12.2%) severe. High hospitalisation rates for injury in the first year of life were observed for the < 5‐year‐old cohort with ARF/RHD. Conclusions We present the first comprehensive Australian evidence that ARF and RHD diagnoses are occurring in Australian children aged under 5 years. Greater awareness among clinicians is needed regarding ARF/RHD as a potential diagnosis in this young, high risk age group.