Disparity in Mortality From Rheumatic Heart Disease in Indigenous Australians

Background In 2018, the World Health Organization prioritized control of acute rheumatic fever (ARF) and rheumatic heart disease (RHD), including disease surveillance. We developed strategies for estimating contemporary ARF/RHD incidence and prevalence in Australia (2015–2017) by age group, sex, and region for Indigenous and non‐Indigenous Australians based on innovative, direct methods. Methods and Results This population‐based study used linked administrative data from 5 Australian jurisdictions. A cohort of ARF (age <45 years) and RHD cases (<55 years) were sourced from jurisdictional ARF/RHD registers, surgical registries, and inpatient data. We developed robust methods for epidemiologic case ascertainment for ARF/RHD. We calculated age‐specific and age‐standardized incidence and prevalence. Age‐standardized rate and prevalence ratios compared disease burden between demographic subgroups. Of 1425 ARF episodes, 72.1% were first‐ever, 88.8% in Indigenous people and 78.6% were aged <25 years. The age‐standardized ARF first‐ever rates were 71.9 and 0.60/100 000 for Indigenous and non‐Indigenous populations, respectively (age‐standardized rate ratio=124.1; 95% CI, 105.2–146.3). The 2017 Global Burden of Disease RHD prevalent counts for Australia (<55 years) underestimate the burden (1518 versus 6156 Australia‐wide extrapolated from our study). The Indigenous age‐standardized RHD prevalence (666.3/100 000) was 61.4 times higher (95% CI, 59.3–63.5) than non‐Indigenous (10.9/100 000). Female RHD prevalence was double that in males. Regions in northern Australia had the highest rates. Conclusions This study provides the most accurate estimates to date of Australian ARF and RHD rates. The high Indigenous burden necessitates urgent government action. Findings suggest RHD may be underestimated in many high‐resource settings. The linked data methods outlined here have potential for global applicability.

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Current Outcomes of Valvular Surgery for Indigenous Australians With Rheumatic Heart Disease: A Single-centre Experience

Heart Lung and Circulation ◽

10.1016/j.hlc.2018.06.829 ◽

2018 ◽

Vol 27 ◽

pp. S410

Author(s):

M. Yong ◽

S. Smith ◽

S. O’Dempsey ◽

R. Grant ◽

P. Wiemers ◽

...

Keyword(s):

Heart Disease ◽

Rheumatic Heart Disease ◽

Indigenous Australians ◽

Single Centre ◽

Valvular Surgery ◽

Single Centre Experience ◽

Rheumatic Heart

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Modelling rheumatic heart disease progression in australia using disease register data linked to administrative records

European Journal of Preventive Cardiology ◽

10.1093/eurjpc/zwab061.109 ◽

2021 ◽

Vol 28 (Supplement_1) ◽

Author(s):

I Stacey ◽

J Hung ◽

K Murray ◽

R Seth ◽

D Bond-Smith ◽

...

Keyword(s):

Heart Failure ◽

Heart Disease ◽

Disease Progression ◽

Rheumatic Heart Disease ◽

Surgical Intervention ◽

Cardiovascular Complications ◽

Sensitivity Analyses ◽

Indigenous Australians ◽

Complication Rates ◽

Rheumatic Heart

Abstract Funding Acknowledgements Type of funding sources: Public grant(s) – National budget only. Main funding source(s): Australian Government National Health and Medical Research Council OnBehalf ERASE project Background Rheumatic Heart Disease (RHD) is a major contributor to morbidity and mortality globally, and is endemic among Indigenous Australians. The RHD Endgame strategy was recently launched, outlining comprehensive methods for eliminating RHD in Australia by 2031. However, there is currently limited information on national rates of RHD and progression to severe or complicated RHD. Purpose This study provides current estimates of RHD progression prior to RHD Endgame Strategy implementation. We estimate the probability and predictors of progressing from RHD diagnosis to cardiovascular complications, death, or need for surgical intervention in the Australian population from expanded data sources, addressing methodological shortcomings in existing evidence by using cross-jurisdictional administrative datasets and a competing risks approach. Methods This retrospective cohort study used linked RHD register, hospital and death data from five Australian jurisdictions (>70% Australians). Progression from RHD diagnosis to all-cause mortality, non-fatal cardiovascular complications (heart failure, stroke, endocarditis, atrial fibrillation), or need for surgical intervention were estimated for people aged <35years diagnosed with first-ever RHD between 2010 and 2018. A minimum 8.5-year look-back excluded prevalent cases; maximum follow-up was 8 years. Proportional cause-specific hazard regression modelling investigated independent predictors of outcomes, with death treated as a competing risk. Sensitivity analyses compared results between all-sources and register-only cohorts. Results We identified 1714 first-ever RHD cases aged <35years in the all-sources cohort (84% Indigenous, 11% migrant, 63% women, 40% age 5-14years, 85% non-metropolitan). Six months after diagnosis, 8.1% (95%CI:6.9-9.5%) had experienced heart failure, other cardiovascular complications or surgical intervention and 23.6% (95%CI:20.2-27.5%) progressed to these outcomes within 8 years. The register-only cohort experienced less disease progression with estimated composite event rates of 5.6% (95%CI:4.7-6.6%) and 18.4% (95%CI:16.6-20.5%) at 6 month and 8 years respectively. Death rate in the all-sources cohort was 0.5% at 6 months and 3.2% at 8 years. Older age, Metropolitan residence, and history of acute rheumatic fever, but not sex or Indigenous status, were independent predictors of major cardiovascular outcomes. Conclusions This study provides the most definitive and contemporary estimates of RHD disease progression in young Australians. Despite Australia"s excellent healthcare system infrastructure, RHD complication rates remain high. Improvements in healthcare systems for diagnosis, monitoring, and management of RHD cases will need to be implemented in both Metropolitan and remote settings as Australia implements its Endgame strategy against RHD. However, primordial and primary prevention provides the best potential to reduce the burden of RHD in Australia and beyond.

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1219Translating epidemiological findings to end rheumatic heart disease in Australia: the ERASE project

International Journal of Epidemiology ◽

10.1093/ije/dyab168.336 ◽

2021 ◽

Vol 50 (Supplement_1) ◽

Author(s):

Assoc Judith Katzenellenbogen ◽

Ingrid Stacey ◽

Vicki Wade ◽

Emma Haynes ◽

Dawn Bessarab

Keyword(s):

Heart Disease ◽

Health Literacy ◽

Rheumatic Heart Disease ◽

Linked Data ◽

Indigenous Australians ◽

Methods Development ◽

Culturally Informed ◽

The Impact ◽

Training Practice ◽

Rheumatic Heart

Abstract Focus of Presentation Rheumatic fever (RF) and rheumatic heart disease (RHD) are endemic among Indigenous Australians. End RHD in Australia: Study of Epidemiology (ERASE) aimed to characterize contemporary RF/RHD epidemiology. Using multi-jurisdictional linked data from several administrative sources, we undertook sub-studies covering diverse epidemiological questions, requiring substantial methods development. Mixed methods further identified barriers/facilitators to inform system redesign. Our multi-disciplinary collaboration supported diverse initiatives to contribute to policy at government, service and community/stakeholder levels. We show how findings from ERASE were applied/translated to address the impact of RF/RHD in Australia. Findings Academic: >15 papers and commentaries/editorials provided the backbone to translational outputs and methods sharing. PhD students have ongoing projects using ERASE datasets. Advocacy: ERASE epidemiological and economic information supported the Endgame Strategy (roadmap for eliminating RHD in Australia by 2031) presented to government. Health professionals: ERASE data contributed to Australian RF/RHD guidelines. Slides of results/interpretation are publically-available on the RHDAustralia website. Student lectures integrate biomedical and culturally-informed perspectives. Indigenous stakeholder engagement: involves (1)presentations to peak Indigenous-controlled organisations (2)co-designed resources (booklets/slides) for capacity-building of RHDAustralia’s national Champions4Change network (3)research workshops to promote two-way learning and health literacy/numeracy. Challenges remain regarding strengths-based approaches when reporting high disparities. Conclusions/Implications Strong translational commitment and national multi-disciplinary networks of Indigenous and non-Indigenous collaborators ensured ERASE generated multiple outputs that continue to inform training, practice, policy and community health literacy. Key messages Build translation and broad collaboration into study from the start.

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Tackling rheumatic heart disease in Indigenous Australians

The Lancet ◽

10.1016/s0140-6736(16)31024-8 ◽

2016 ◽

Vol 388 (10040) ◽

pp. e1

Author(s):

Sophie Cousins

Keyword(s):

Heart Disease ◽

Rheumatic Heart Disease ◽

Indigenous Australians ◽

Rheumatic Heart

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The temporospatial epidemiology of rheumatic heart disease in Far North Queensland, tropical Australia 1997–2017; impact of socioeconomic status on disease burden, severity and access to care

PLoS Neglected Tropical Diseases ◽

10.1371/journal.pntd.0008990 ◽

2021 ◽

Vol 15 (1) ◽

pp. e0008990

Author(s):

Katherine Kang ◽

Ken W. T. Chau ◽

Erin Howell ◽

Mellise Anderson ◽

Simon Smith ◽

...

Keyword(s):

Heart Disease ◽

Rheumatic Heart Disease ◽

Indigenous Population ◽

Inverse Correlation ◽

Secondary Prophylaxis ◽

Socioeconomic Disadvantage ◽

Indigenous Australians ◽

Far North ◽

Younger Age ◽

Rheumatic Heart

Background The incidence of rheumatic heart disease (RHD) among Indigenous Australians remains one of the highest in the world. Many studies have highlighted the relationship between the social determinants of health and RHD, but few have used registry data to link socioeconomic disadvantage to the delivery of patient care and long-term outcomes. Methods A retrospective study of individuals living with RHD in Far North Queensland (FNQ), Australia between 1997 and 2017. Patients were identified using the Queensland state RHD register. The Socio-Economic Indexes for Areas (SEIFA) Score–a measure of socioeconomic disadvantage–was correlated with RHD prevalence, disease severity and measures of RHD care. Results Of the 686 individuals, 622 (90.7%) were Indigenous Australians. RHD incidence increased in the region from 4.7/100,000/year in 1997 to 49.4/100,000/year in 2017 (p<0.001). In 2017, the prevalence of RHD was 12/1000 in the Indigenous population and 2/1000 in the non-Indigenous population (p<0.001). There was an inverse correlation between an area’s SEIFA score and its RHD prevalence (rho = -0.77, p = 0.005). 249 (36.2%) individuals in the cohort had 593 RHD-related hospitalisations; the number of RHD-related hospitalisations increased during the study period (p<0.001). In 2017, 293 (42.7%) patients met criteria for secondary prophylaxis, but only 73 (24.9%) had good adherence. Overall, 119/686 (17.3%) required valve surgery; the number of individuals having surgery increased over the study period (p = 0.02). During the study 39/686 (5.7%) died. Non-Indigenous patients were more likely to die than Indigenous patients (9/64 (14%) versus 30/622 (5%), p = 0.002), but Indigenous patients died at a younger age (median (IQR): 52 (35–67) versus 73 (62–77) p = 0.013). RHD-related deaths occurred at a younger age in Indigenous individuals than non-Indigenous individuals (median (IQR) age: 29 (12–58) versus 77 (64–78), p = 0.007). Conclusions The incidence of RHD, RHD-related hospitalisations and RHD-related surgery continues to rise in FNQ. Whilst this is partly explained by increased disease recognition and improved delivery of care, the burden of RHD remains unacceptably high and is disproportionately borne by the socioeconomically disadvantaged Indigenous population.

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