Abstract
INTRODUCTION: Preventable rheumatic heart disease (RHD) deaths continue to occur in Australia, with Aboriginal people disproportionately affected. Despite research into structural drivers and the lived experience of people with RHD, and national guidelines focusing on RHD prevention and treatment, recent coronial inquests have highlighted that systemic failures are ongoing. Few studies describe RHD service delivery and/or mortality within the Western Australian (WA) context. OBJECTIVE: This study aimed to integrate quantitative information regarding RHD-related deaths in WA between 2012 and 2021 with qualitative interview data to identify system-level opportunities for the prevention of RHD-related mortality in the WA health care setting. DESIGN: Using quantitative data from the WA RHD register, a descriptive analysis of the clinical and demographic characteristics of RHD patients aged < 65 years was conducted, stratified by vital status. Thematic qualitative analysis of RHD stakeholder interviews was conducted in parallel, capturing systemic factors perceived to prevent or contribute to RHD-related mortality in WA. FINDINGS: Limited health service contacts were documented for the 60 registered-recorded deaths among people with RHD. Interviewees emphasised that access to appropriate care was vital to prevent mortality. Passionate healthcare providers connect patients with care by fostering trusting relationships, but logistical, socio-cultural and care quality barriers continue to hamper connections. CONCLUSION: Systemic change is needed in WA to support motivated providers and ensure that efforts to reduce RHD mortality do not rely on individual initiatives. This study contributes evidence for the need to improve RHD program design by prioritising patient-provider connections, empowering, and resourcing providers to effectively engage with RHD patients.