Excess Deaths Associated with Rheumatic Heart Disease, Australia, 2013-2017.

During 2013-2017, the mortality rate ratio for rheumatic heart disease among Indigenous versus non-Indigenous persons in Australia was 15.9, reflecting health inequity. Using excess mortality methods, we found that deaths associated with rheumatic heart disease among Indigenous Australians were probably substantially undercounted, affecting accuracy of calculations based solely on Australian Bureau of Statistics data.

The evidence that rheumatic heart disease control programs in Australia are making an impact.

OBJECTIVE: Rheumatic heart disease (RHD) comprises heart-valve damage caused by acute rheumatic fever (ARF). The Australian Government Rheumatic Fever Strategy funds RHD Control Programs to support detection and management of ARF and RHD. We assessed epidemiological changes during the years of RHD Control Program operation. METHODS: Linked RHD register, hospital and death data from four Australian jurisdictions were used to measure ARF/RHD outcomes between 2010 and 2017, including: 2-year progression to severe RHD/death; ARF recurrence; secondary prophylaxis delivery and earlier disease detection. RESULTS: Delivery of secondary prophylaxis improved from 53% median proportion of days covered (95%CI: 46-61%, 2010) to 70% (95%CI: 71-68%, 2017). Secondary prophylaxis adherence protected against progression to severe RHD/death (hazard ratio 0.2, 95% CI 0.1-0.8). Other measures of program effectiveness (ARF recurrences, progression to severe RHD/death) remained stable. ARF case numbers and concurrent ARF/RHD diagnoses increased. CONCLUSIONS: RHD Control Programs have contributed to major success in the management of ARF/RHD through increased delivery of secondary prevention yet ARF case numbers, not impacted by secondary prophylaxis and sensitive to increased awareness/surveillance, increased. IMPLICATIONS FOR PUBLIC HEALTH: RHD Control Programs have a major role in delivering cost-effective RHD prevention. Sustained investment is needed but with greatly strengthened primordial and primary prevention.

Rheumatic heart disease mortality in Indigenous and non-Indigenous Australians between 2010 and 2017.

OBJECTIVES: To generate contemporary age-specific mortality rates for Indigenous and non-Indigenous Australians aged <65 years who died from rheumatic heart disease (RHD) between 2013 and 2017, and to ascertain the underlying causes of death (COD) of a prevalent RHD cohort aged <65 years who died during the same period. METHODS: For this retrospective, cross-sectional epidemiological study, Australian RHD deaths for 2013-2017 were investigated by first, mortality rates generated using Australian Bureau of Statistics death registrations where RHD was a coded COD, and second COD analyses of death records for a prevalent RHD cohort identified from RHD register and hospitalisations. All analyses were undertaken by Indigenous status and age group (0-24, 25-44, 45-64 years). RESULTS: Age-specific RHD mortality rates per 100 000 were 0.32, 2.63 and 7.41 among Indigenous 0-24, 25-44 and 45-64 year olds, respectively, and the age-standardised mortality ratio (Indigenous vs non-Indigenous 0-64 year olds) was 14.0. Within the prevalent cohort who died (n=726), RHD was the underlying COD in 15.0% of all deaths, increasing to 24.6% when RHD was included as associated COD. However, other cardiovascular and non-cardiovascular conditions were the underlying COD in 34% and 43% respectively. CONCLUSION: Premature mortality in people with RHD aged <65 years has approximately halved in Australia since 1997-2005, most notably among younger Indigenous people. Mortality rates based solely on underlying COD potentially underestimates true RHD mortality burden. Further strategies are required to reduce the high Indigenous to non-Indigenous mortality rate disparity, in addition to optimising major comorbidities that contribute to non-RHD mortality.

Abbreviated Echocardiographic Screening for Rheumatic Heart Disease by Nonexperts with and without Offsite Expert Review: A Diagnostic Accuracy Study.

BACKGROUND: Early detection of rheumatic heart disease (RHD) through echocardiographic screening can facilitate early access to effective treatment, which reduces the risk for progression. Accurate, feasible approaches to echocardiographic screening that can be incorporated into routine health services are needed. The authors hypothesized that offsite expert review could improve the diagnostic accuracy of nonexpert-obtained echocardiographic images. METHODS: This prospective cross-sectional study was performed to evaluate the diagnostic accuracy of health worker-conducted single parasternal long-axis view with a sweep of the heart using hand-carried ultrasound for the detection of RHD in high-risk populations in Timor-Leste and Australia. In the primary analysis, the presence of any mitral or aortic regurgitation met the criteria for a positive screening result. Sensitivity and specificity were calculated for a screen-and-refer approach based on nonexpert practitioner assessment (approach 1) and for an approach using offsite expert review of nonexpert practitioner-obtained images to decide onward referral (approach 2). Each participant had a reference test performed by an expert echocardiographer on the same day as the index test. Diagnosis of RHD was determined by a panel of three experts, using 2012 World Heart Federation criteria. RESULTS: The prevalence of borderline or definite RHD among 3,329 participants was 4.0% (95% CI, 3.4%-4.7%). The sensitivity of approach 1 for borderline or definite RHD was 86.5% (95% CI, 79.5%-91.8%), and the specificity was 61.4% (95% CI, 59.7%-63.1%). Approach 2 achieved similar sensitivity (88.4%; 95% CI, 81.5%-93.3%) and improved specificity (77.1%; 95% CI, 75.6%-78.6%). CONCLUSION: Nonexpert practitioner-obtained single parasternal long-axis view with a sweep of the heart images, reviewed by an offsite expert, can detect borderline and definite RHD on screening with reasonable sensitivity and specificity. Brief training of nonexpert practitioners with ongoing support could be used as an effective strategy for scaling up echocardiographic screening for RHD in high-risk settings.

Improving primary care for Aboriginal and Torres Strait Islander people with rheumatic heart disease: What can I do?

BACKGROUND: Acute rheumatic fever (ARF) and rheumatic heart disease (RHD) disproportionately affect Aboriginal and Torres Strait Islander people in Australia, with devastating impacts on morbidity, mortality and community wellbeing. Research suggests that general practitioners and primary care staff perceive insurmountable barriers to improving clinical outcomes, including the need for systemic change outside their scope of practice. OBJECTIVE: The aim of this article is to identify constructive, micro-level strategies that primary healthcare clinicians can consider, adopt and sustainably use to improve care for people with ARF and RHD in their routine clinical practice. DISCUSSION: Through skilled clinical care, reflection and culturally safe practices, individual primary healthcare clinicians have substantial capacity to improve care experiences and outcomes for Aboriginal and Torres Strait Islander people and communities affected by ARF and RHD.

Evaluation of a Community-Led Program for Primordial and Primary Prevention of Rheumatic Fever in Remote Northern Australia.

Environmental factors including household crowding and inadequate washing facilities underpin recurrent streptococcal infections in childhood that cause acute rheumatic fever (ARF) and subsequent rheumatic heart disease (RHD). No community-based 'primordial'-level interventions to reduce streptococcal infection and ARF rates have been reported from Australia previously. We conducted a study at three Australian Aboriginal communities aiming to reduce infections including skin sores and sore throats, usually caused by Group A Streptococci, and ARF. Data were collected for primary care diagnoses consistent with likely or potential streptococcal infection, relating to ARF or RHD or related to environmental living conditions. Rates of these diagnoses during a one-year Baseline Phase were compared with a three-year Activity Phase. Participants were children or adults receiving penicillin prophylaxis for ARF. Aboriginal community members were trained and employed to share knowledge about ARF prevention, support reporting and repairs of faulty health-hardware including showers and provide healthcare navigation for families focusing on skin sores, sore throat and ARF. We hypothesized that infection-related diagnoses would increase through greater recognition, then decrease. We enrolled 29 participants and their families. Overall infection-related diagnosis rates increased from Baseline (mean rate per-person-year 1.69 [95% CI 1.10-2.28]) to Year One (2.12 [95% CI 1.17-3.07]) then decreased (Year Three: 0.72 [95% CI 0.29-1.15]) but this was not statistically significant (p = 0.064). Annual numbers of first-known ARF decreased, but numbers were small: there were six cases of first-known ARF during Baseline, then five, 1, 0 over the next three years respectively. There was a relationship between household occupancy and numbers (p = 0.018), but not rates (p = 0.447) of infections. This first Australian ARF primordial prevention study provides a feasible model with encouraging findings.

Providing guideline-recommended preventive cardiovascular care to Aboriginal and Torres Strait Islander women: exploring gender differences with a medical record review in primary health care.

BACKGROUND: For Aboriginal and Torres Strait Islander women, the premature burden of cardiovascular disease is affecting their capacity to fulfil roles in society, and promote the health and wellbeing of future generations. In Australia, there is limited understanding of the difference in primary preventive cardiovascular care experienced by women, despite knowledge of sex and gender differentials in health profile and receipt of guideline-based acute care. This paper sought to explore the health profile and receipt of assessment and management of cardiovascular risk for Aboriginal and Torres Strait Islander women accessing preventive primary health care, and investigate gender differentials. METHOD: Records of 1200 current clients, 50% women, aged 18-74years from three Aboriginal Health Services in central and South Australia for the period 7/2018-6/2020 were reviewed. RESULTS: Twelve percent had documented cardiovascular disease. Compared with men, women with no recorded cardiovascular disease had a greater likelihood of being overweight or obese, a waist circumference indicative of risk, diabetes, and depression. Women were less likely to report being physically active. CONCLUSIONS: The research concluded that gaps exist in the provision and recording of guideline-recommended primary preventive care regardless of sex. These are stark, given the evident burden.

"The world is so white": improving cultural safety in healthcare systems for Australian Indigenous people with rheumatic heart disease.

OBJECTIVE: To examine the views of senior health system knowledge holders, including Aboriginal experts, regarding the spaces where elimination strategies for rheumatic heart disease take place: Aboriginal and Torres Strait Islander ways of knowing, being and doing; and biomedical healthcare models. We aimed to support the implementation of the RHD Endgame Strategy by providing some of the 'how'. METHODS: In-depth interviews were undertaken with 23 participants. The design of the interview questions and analysis of the data used strengths-based approaches as directed by Aboriginal researchers. RESULTS: Given the dominance of the biomedical worldview, and the complex trajectory of RHD, there is significant tension in the intersection of worldviews. Tensions that limit productive dialogue are juxtaposed with suggestions on how to reduce tension through reflexivity, power shifting and endorsing Aboriginal leadership and governance. Evidence supported cultural safety for RHD care, prevention and elimination as the key action. CONCLUSIONS: Recommendations include addressing power imbalances between dominant and minority populations throughout the health system; reform that both supports and is supported by Non-Indigenous and Aboriginal and Torres Strait Islander leadership. IMPLICATIONS FOR PUBLIC HEALTH: Increased understanding of and support for Indigenous leadership and cultural safety will enable implementation of the new RHD strategy.

A systematic review on assessment and management of preventive cardiovascular care in primary health for Aboriginal and Torres Strait Islander women and men.

In promoting positive cardiovascular health for Aboriginal and Torres Strait Islander peoples, there is a need to ensure provision of high-quality risk assessment and management in primary healthcare settings. There is some evidence of gender gaps for Australian women in the provision of cardiovascular risk assessment and management; however, there is little understanding of whether these gaps are also present for Aboriginal and Torres Strait Islander women. A mixed-method systematic review was utilised to synthesise existing evidence on the provision of assessment and management against guideline-recommended care for Aboriginal and Torres Strait Islander women, and determine whether gender disparities in provision of care exist for this population. Sixteen studies that report gender-specific data indicate there are significant gaps in the provision of assessment and management for Aboriginal and Torres Strait Islander women and men alike. There is no evidence of incorporation of social and emotional wellbeing into cardiovascular care and limited studies outlining the assessment and management of behaviours and factors that may be protective of cardiovascular health. Furthermore, little is known about the provision of care in mainstream primary health services for Aboriginal and Torres Strait Islander peoples.

Aboriginal and Torres Strait Islander health checks: sociodemographic characteristics and cardiovascular risk factors.

OBJECTIVE: To quantify Aboriginal and Torres Strait Islander health check claims in Australian adults in relation to sociodemographic and health characteristics, including prior cardiovascular disease (CVD) and CVD risk factors. METHODS: The study involved analysis of baseline data (2006-2009) from the Sax Institute's 45 and Up Study, involving 1753 Aboriginal and Torres Strait Islander adults in New South Wales, Australia, linked to Medicare Benefits Schedule (MBS) hospital and death data (to December 2015). The outcome was a claim for receiving a Medicare-funded Health Assessment for Aboriginal and Torres Strait Islander People (MBS item 715) in the 2 years before December 2015. Logistic regression was used to estimate odds ratios (ORs) for receiving a health check in relation to sociodemographic and health characteristics. RESULTS: One-third (32%) of participants received at least one Medicare-funded health check in the 2-year period. The probability of receiving a health check was higher for women than men (adjusted OR 1.47; 95% CI 1.18, 1.84), for those with lowest education than for those with highest education (OR 1.58; CI 1.11, 2.24), for those in a regional area (OR 1.56; CI 1.22, 2.01) or remote area (OR 2.38; CI 1.8, 3.16) than for those in major cities, for those with prior CVD than for those without (OR 1.80; CI 1.42, 2.27), for those with CVD risk factors than for those without (adjusted OR between 1.28 and 2.28, depending on risk factor), for those with poor self-rated health than for those with excellent self-rated health (OR 3.15; CI 1.76, 6.65) and for those with more than 10 visits to a general practitioner (GP) per year than for those with 0-2 visits (OR 33.62; CI 13.45, 84.02). Additional adjustment for number of GP visits or self-rated health substantially attenuated ORs for prior CVD and most CVD risk factors. When mutually adjusted, use of GP services and poorer self-rated health remained strongly associated with receiving a health check. CONCLUSIONS: Aboriginal and Torres Strait Islander people with the greatest healthcare need and at highest risk of CVD were more likely to receive a health check; however, a significant proportion of those who were eligible had not received this preventive care intervention. Findings indicate that there is greater potential for the use of health checks (MBS item 715) in improving identification and management of Aboriginal and Torres Strait Islander people at high risk of CVD, potentially preventing future CVD events.

Improving primary prevention of acute rheumatic fever in Australia: consensus primary care priorities identified through an eDelphi process.

OBJECTIVES: To establish the priorities of primary care providers to improve assessment and treatment of skin sores and sore throats among Aboriginal and Torres Strait Islander people at risk of acute rheumatic fever (ARF) and rheumatic heart disease (RHD). DESIGN: Modified eDelphi survey, informed by an expert focus group and literature review. SETTING: Primary care services in any one of the five Australian states or territories with a high burden of ARF. PARTICIPANTS: People working in any primary care role within the last 5 years in jurisdiction with a high burden of ARF. RESULTS: Nine people participated in the scoping expert focus group which informed identification of an access framework for subsequent literature review. Fifteen broad concepts, comprising 29 strategies and 63 different actions, were identified on this review. These concepts were presented to participants in a two-round eDelphi survey. Twenty-six participants from five jurisdictions participated, 16/26 (62%) completed both survey rounds. Seven strategies were endorsed as high priorities. Most were demand-side strategies with a focus on engaging communities and individuals in accessible, comprehensive, culturally appropriate primary healthcare. Eight strategies were not endorsed as high priority, all of which were supply-side approaches. Qualitative responses highlighted the importance of a comprehensive primary healthcare approach as standard of care rather than disease-specific strategies related to management of skin sores and sore throat. CONCLUSION: Primary care staff priorities should inform Australia's commitments to reduce the burden of RHD. In particular, strategies to support comprehensive Aboriginal and Torres Strait Islander primary care services rather than an exclusive focus on discrete, disease-specific initiatives are needed.

Improving the well-being for young people living with rheumatic heart disease: A peer support pilot program through Danila Dilba Health Service.

ISSUE ADDRESSED: Aboriginal and Torres Strait Islander peoples in Australia have an inequitable burden of acute rheumatic fever (ARF) and rheumatic heart disease (RHD), concentrated among young people and necessitating ongoing medical care during adolescence. There is an unmet need for improved well-being and support for these young people to complement current biomedical management. METHODS: This pilot program initiative aimed to determine the suitability and appropriate format of an ongoing peer support program to address the needs of young people living with RHD in urban Darwin. RESULTS: Five participants took part in three sessions. Findings demonstrated the peer-support setting was conducive to offering support and enabled participants to share their experiences of living with RHD with facilitators and each other. Satisfaction rates for each session, including both educational components and support activities, were high. CONCLUSIONS: Learnings from the pilot program can inform the following elements of an ongoing peer-support program: characteristics of co-facilitators and external presenters; program format and session outlines; possible session locations; and resourcing. SO WHAT?: Peer support programs for chronic conditions have demonstrated a wide range of benefits including high levels of satisfaction by participants, improved social and emotional well-being and reductions in patient care time required by health professionals. This pilot program demonstrates the same benefits could result for young people living with RHD.

Risk of severe illness from COVID-19 among Aboriginal and Torres Strait Islander adults: the construct of 'vulnerable populations' obscures the root causes of health inequities.

OBJECTIVE: To quantify the prevalence of known health-related risk factors for severe COVID-19 illness among Aboriginal and Torres Strait Islander adults, and their relationship with social determinants. METHODS: Weighted cross-sectional analysis of the 2018-19 National Aboriginal and Torres Strait Islander Health Survey; Odds Ratios for cumulative risk count category (0, 1, or ≥2 health-related risk factors) by social factors calculated using ordered logistic regression. RESULTS: Of the adult population, 42.9%(95%CI:40.6,45.2) had none of the examined health-related risk factors; 38.9%(36.6,41.1) had 1, and 18.2%(16.7,19.7) had ≥2. Adults experiencing relative advantage across social indicators had significantly lower cumulative risk counts, with 30-70% lower odds of being in a higher risk category. CONCLUSIONS: Aboriginal and Torres Strait Islander peoples must continue to be recognised as a priority population in all stages of pandemic preparedness and response as they have disproportionate exposure to social factors associated with risk of severe COVID-19 illness. Indigeneity itself is not a 'risk' factor and must be viewed in the wider context of inequities that impact health Implications for public health: Multi-sectoral responses are required to improve health during and after the COVID-19 pandemic that: enable self-determination; improve incomes, safety, food security and culturally-safe healthcare; and address discrimination and trauma.

Formative evaluation of a community-based approach to reduce the incidence of Strep A infections and acute rheumatic fever.

OBJECTIVES: To explore the acceptability of a novel, outreached-based approach to improve primary and primordial prevention of Strep A skin sores, sore throats and acute rheumatic fever in remote Aboriginal communities. METHODS: A comprehensive prevention program delivered by trained Aboriginal Community Workers was evaluated using approximately fortnightly household surveys about health and housing and clinical records. RESULTS: Twenty-seven primary participants from three remote Aboriginal communities in the Northern Territory consented, providing 37.8 years of retrospective baseline data and 18.5 years of prospective data during the study period. Household members were considered to be secondary participants. Five Aboriginal Community Workers were trained and employed, delivering a range of supports to households affected by acute rheumatic fever including environmental health support and education. Clinical record audit and household self-report of Strep A infections were compared. No association between clinical- and self-report was identified. CONCLUSIONS: Ongoing participation suggests this outreach-based prevention program was acceptable and associated with improved reporting of household maintenance issues and awareness of prevention opportunities for Strep A infections. Implications for public health: Biomedical, clinic-based approaches to the management of Strep A infections in remote communities can be usefully augmented by outreach-based supports delivered by Aboriginal Community Workers responding to community needs.

Rheumatic heart disease in Indigenous young peoples.

Indigenous children and young peoples live with an inequitable burden of acute rheumatic fever and rheumatic heart disease. In this Review, we focus on the epidemiological burden and lived experience of these conditions for Indigenous young peoples in Australia, New Zealand, and Canada. We outline the direct and indirect drivers of rheumatic heart disease risk and their mitigation. Specifically, we identify the opportunities and limitations of predominantly biomedical approaches to the primary, secondary, and tertiary prevention of disease among Indigenous peoples. We explain why these biomedical approaches must be coupled with decolonising approaches to address the underlying cause of disease. Initiatives underway to reduce acute rheumatic fever and rheumatic heart disease in Australia, New Zealand, and Canada are reviewed to identify how an Indigenous rights-based approach could contribute to elimination of rheumatic heart disease and global disease control goals.

Rheumatic Heart Disease in Pregnancy: New Strategies for an Old Disease?

RHD in pregnancy (RHD-P) is associated with an increased burden of maternal and perinatal morbidity and mortality. A sequellae of rheumatic fever resulting in heart valve damage if untreated, RHD is twice as common in women. In providing an historical overview, this commentary provides context for prevention and treatment in the 21 st century. Four underlying themes inform much of the literature on RHD-P: its association with inequities; often-complex care requirements; demands for integrated care models, and a life-course approach. While there have been some gains particularly in awareness, strengthened policies and funding strategies are required to sustain improvements in the RHD landscape and consequently improve outcomes. As the principal heart disease seen in pregnant women in endemic regions, it is unlikely that the Sustainable Development Goal 3 target of reduced global maternal mortality ratio can be met by 2030 if RHD is not better addressed for women and girls.

Caring for Pregnant Women with Rheumatic Heart Disease: A Qualitative Study of Health Service Provider Perspectives.

Background: Rheumatic heart disease (RHD) persists in low-middle-income countries and in high-income countries where there are health inequities. RHD in pregnancy (RHD-P) is associated with poorer maternal and perinatal outcomes. Our study examines models of care for women with RHD-P from the perspectives of health care providers. Methods: A descriptive qualitative study exploring Australian health professionals' perspectives of care pathways for women with RHD-P. Thematic analysis of semi-structured interviews with nineteen participants from maternal health and other clinical and non-clinical domains related to RHD-P. Results: A constellation of factors challenged the provision of integrated women-centred care, related to health systems, workforces and culture. Themes that impacted on the provision of quality woman-centred care included conduits of care - helping to break down silos of information, processes and access; 'layers on layers' - reflecting the complexity of care issues; and shared understandings - factors that contributed to improved understandings of disease and informed decision-making. Conclusions: Pregnancy for women with RHD provides an opportunity to strengthen health system responses, improve care pathways and address whole-of-life health. To respond effectively, structural and cultural changes are required including enhanced investment in education and capacity building - particularly in maternal health - to support a better informed and skilled workforce. Aboriginal Mothers and Babies programs provide useful exemplars to guide respectful effective models of care for women with RHD, with relevance for non-Indigenous women in high-risk RHD communities.For key goals to be met in the context of RHD, maternal health must be better integrated into RHD strategies and RHD better addressed in maternal health.