Contemporary Incidence and Prevalence of Rheumatic Fever and Rheumatic Heart Disease in Australia Using Linked Data: The Case for Policy Change

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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Acute Rheumatic Fever and Rheumatic Heart Disease in Indigenous Populations

Pediatric Clinics of North America ◽

10.1016/j.pcl.2009.09.011 ◽

2009 ◽

Vol 56 (6) ◽

pp. 1401-1419 ◽

Cited By ~ 27

Author(s):

Andrew C. Steer ◽

Jonathan R. Carapetis

Keyword(s):

Heart Disease ◽

Rheumatic Fever ◽

Rheumatic Heart Disease ◽

Acute Rheumatic Fever ◽

Indigenous Populations ◽

Rheumatic Heart

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African leaders take action on RHD: The 4th All-Africa Workshop on Acute Rheumatic Fever and Rheumatic Heart Disease & African Union RHD Communiqué

Global Cardiology Science and Practice ◽

10.21542/gcsp.2016.12 ◽

2016 ◽

Vol 2016 (2) ◽

Author(s):

Shanti Nulu ◽

Robert C Neely ◽

Zeina Tawakol ◽

Magdi Yacoub

Keyword(s):

Heart Disease ◽

Rheumatic Fever ◽

Rheumatic Heart Disease ◽

Acute Rheumatic Fever ◽

Addis Ababa ◽

World Health ◽

African Union ◽

African Countries ◽

The World ◽

Rheumatic Heart

The 4th All-Africa Workshop on Acute Rheumatic Fever and Rheumatic Heart Disease (RHD) was held in Addis Ababa from March 4-6, 2016, hosted by the Pan-African Society of Cardiology (PASCAR) and the African Union Commission (AUC). This was a conference of expert cardiologists and cardiac surgeons who are leading RHD efforts, and included delegates from 22 African countries (Figure 1). There were also representatives from major international stakeholders, such as the World Health Organization (WHO), the World Heart Federation (WHF), as well as the philanthropic arms of the Novartis and Medtronic, both of which have active programs targeting RHD.

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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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Pioneering Methods Developed to Investigate the Burden of Acute Rheumatic Fever and Rheumatic Heart Disease Using Multiple Linked Data Sources

International Journal for Population Data Science ◽

10.23889/ijpds.v5i5.1632 ◽

2020 ◽

Vol 5 (5) ◽

Author(s):

Rebecca Seth ◽

Daniela Bond-Smith ◽

Judith Katzenellenbogan

Keyword(s):

Heart Disease ◽

Rheumatic Fever ◽

Rheumatic Heart Disease ◽

Linked Data ◽

Hospital Admissions ◽

Data Sources ◽

Health Concern ◽

Prediction Algorithm ◽

Hospital Data ◽

Rheumatic Heart

IntroductionAcute Rheumatic Fever (ARF) and Rheumatic Heart Disease (RHD) remain a major public health concern in Australia. Government action requires reliable burden estimates, however data from single or unlinked sources are only partial and likely to be skewed, exacerbated by systemic problems with ICD-10 codes for RHD. Linked data provide an opportunity to address these shortcomings. Objectives and ApproachObjectives: to develop a methodology using harmonised linked data across five Australian jurisdictions to determine the burden of ARF and RHD <55 years, in particular robust case definitions for calculating incidence and prevalence. For identifying RHD in hospital-only patients, validated case and non-cases from non-hospital sources were used with linked inpatient hospital admissions to develop a RHD prediction model. Additional data sources (register and surgery databases) were used to identify cases for reporting RHD prevalence. A unique ARF episode was defined as an ARF record >90 days from the previous one across both register and hospital data. For first-ever episodes we applied a lookback to mid-2001 for both ARF and RHD. For Western Australia, we evaluated the effect of look-back period on prevalence pooling. ResultsFor total ARF incidence over 3 years (2015-2017), there was 1425 episodes compared to 1027 episodes for first-ever ARF. There was an annual average of 5241 cases of RHD identified using our new methods (0-54yrs) – substantially higher than 2634 and 4255 RHD cases reported by Global Burden of Disease Study and Australian Institute of Welfare estimates respectively for 2017. Increased lookback had no effect on first-ever ARF but increased RHD prevalence >25 years. Conclusion / ImplicationsBy using multiple sources and cross-jurisdictional data we were able to provide contemporary and robust estimates for the burden of ARF and RHD in Australia. The prediction algorithm we developed can also be used in other countries, where only hospital data is available, to quantify RHD burden.

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Epidemiology and global burden of rheumatic heart disease

ESC CardioMed ◽

10.1093/med/9780198784906.003.0065 ◽

2018 ◽

pp. 314-322

Author(s):

Dianne Sika-Paotonu ◽

Andrea Beaton ◽

Jonathan Carapetis

Keyword(s):

Heart Disease ◽

Rheumatic Fever ◽

Rheumatic Heart Disease ◽

Acute Rheumatic Fever ◽

Indigenous Populations ◽

Autoimmune Response ◽

Global Burden ◽

Streptococcal Infections ◽

Group A ◽

Rheumatic Heart

Acute rheumatic fever is caused by the body’s autoimmune response to a group A streptococcal infection, classically pharyngitis. Rheumatic heart disease refers to the long-term cardiac damage caused by either a single severe episode or multiple recurrent episodes of acute rheumatic fever. It is rheumatic heart disease that remains a significant worldwide cause of morbidity and mortality, particularly in resource-poor settings. Improved living conditions and widespread treatment of superficial group A streptococcal infections have meant acute rheumatic fever/rheumatic heart disease are now rare in developed countries although some Indigenous populations living in wealthy nations are adversely affected. Acute rheumatic fever largely affects children between the ages of 5–14 years with risk factors for acute rheumatic fever/rheumatic heart disease including age, sex, environmental influences that increase exposure to group A streptococcal infections, and host susceptibility. Since rheumatic heart disease results from cumulative damage, the peak prevalence of clinically symptomatic rheumatic heart disease occurs between the ages of 20–40 years. Conservative estimates indicate between 275,000 and 345,000 deaths occur each year from rheumatic heart disease with global burden of disease figures in 2013 calculating at least 32.9 million prevalent rheumatic heart disease cases. In 2015, rheumatic heart disease was ranked as the 43rd leading cause of years of life lost and is attributed to an annual 1.8 million years lived with disability and 9 million lost disability-adjusted life years. More than 75% of the world’s children are currently living in countries where rheumatic heart disease remains endemic. Effective rheumatic heart disease prevention, control, and management warrants prioritization if World Health Organization global targets to reduce premature deaths from cardiovascular diseases by 25% by 2025 are to be achieved.

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Rheumatic heart disease: prevalence and preventive measures in the Indian subcontinentKeywords: rheumatic heart disease; rheumatic fever

Heart ◽

10.1136/hrt.86.2.127 ◽

2001 ◽

Vol 86 (2) ◽

pp. 127-127

Author(s):

S PADMAVATI

Keyword(s):

Heart Disease ◽

Rheumatic Fever ◽

Rheumatic Heart Disease ◽

Preventive Measures ◽

Disease Prevalence ◽

Rheumatic Heart

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The American Heart Association’s Call to Action for Reducing the Global Burden of Rheumatic Heart Disease: A Policy Statement From the American Heart Association

Circulation ◽

10.1161/cir.0000000000000922 ◽

2020 ◽

Vol 142 (20) ◽

Cited By ~ 1

Author(s):

Andrea Beaton ◽

Flavia B. Kamalembo ◽

James Dale ◽

Joseph H. Kado ◽

Ganesan Karthikeyan ◽

...

Keyword(s):

Heart Disease ◽

Rheumatic Heart Disease ◽

American Heart Association ◽

American Heart ◽

Heart Association ◽

World Health ◽

Policy Statement ◽

World Health Assembly Resolution ◽

Worker Education ◽

Rheumatic Heart

Rheumatic heart disease (RHD) affects ≈40 million people and claims nearly 300 000 lives each year. The historic passing of a World Health Assembly resolution on RHD in 2018 now mandates a coordinated global response. The American Heart Association is committed to serving as a global champion and leader in RHD care and prevention. Here, we pledge support in 5 key areas: (1) professional healthcare worker education and training, (2) technical support for the implementation of evidence-based strategies for rheumatic fever/RHD prevention, (3) access to essential medications and technologies, (4) research, and (5) advocacy to increase global awareness, resources, and capacity for RHD control. In bolstering the efforts of the American Heart Association to combat RHD, we hope to inspire others to collaborate, communicate, and contribute.

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