Theme 1: Epidemiology and Bioscience
- Understanding the burden of ARF and RHD
Over the last 20 years increasingly high quality information on the burden of ARF and RHD in Australia has been collected. These data sources need to be unified into a single ‘living’ source of national epidemiologic data which is readily accessible by decision makers and researchers. This unified source will make it possible to: define a burden of disease methodology which is stable over time, reduce measurement/reporting bias and to set national disease control targets and monitor progress towards those goals.
i. Data linkage strategy
Australia benefits from sources of routinely collected data that can be analysed to better understand outcomes and monitor long term trends in RHD, and are largely unavailable in other endemic settings. These data sources include hospital data, death registries and jurisdictional RHD registers and notifications. A comprehensive data linkage strategy is planned for the END RHD CRE to provide a replicable overview of national ARF and RHD burden.
The baseline RHD burden will underpin much of the roadmap; it will establish the starting point for monitoring in the future, and will help identify the public health target. To date, jurisdictional RHD data have been fragmented, with limited use of ‘big data’ that allow person-based, population-based estimates. In collaboration with stakeholders nationally, a protocol for utilising linked hospital, death, notifications and RHD register data has been developed. Given the varying jurisdictional data available, jurisdiction-specific reports as well as an overall summary report will be published to maximise translation at the sub-national level. These unique data sets (data anticipated 2017) will establish the methodology and estimates with which to monitor RHD burden into the future.
- Pharyngitis burden and treatment
Prompt treatment of GAS pharyngitis with antibiotics may reduce the risk of ARF in an individual by up to 80%. This offers a promising prevention opportunity if children with GAS pharyngitis can be identified and treated before ARF develops. In a recent prospective national surveillance study, 24% of remote Indigenous children reported a sore throat preceding ARF – a much higher rate than previously documented - though only half of these children sought medical care. The END RHD CRE will include primary care-based quantitative and qualitative studies to determine the burden of GAS pharyngitis presenting to clinics, the potential role of rapid GAS antigen testing in these settings, and the impact of an education campaign on health care presentations with sore throat.
- Measuring adherence to secondary prophylaxis
The END RHD CRE is exploring new metrics to describe and understand adherence with secondary prophylaxis (SP).
The current Australian key performance indicator for adherence to SP is relatively crude: the number of patients receiving more than 80% of scheduled injections. The ‘Days at Risk’ concept has emerged from the NT RHD control program in an attempt to better quantify the relationship between overdue BPG injections and recurrences of ARF. This approach offers considerable promise to support development of better tools to visualise the level of protection, meaningfully monitor SP delivery at a population level, and inform imperfect understanding of the mechanism of action for BPG protection from recurrences.
This metric will form a central part of a PhD thesis investigating adherence among ARF/RHD patients on the NT register. Analytic methods will also be developed to measure the relationship of adherence on ARF/RHD outcomes using linked data.
- Determining the burden of impetigo and GAS pharyngitis in Aboriginal children in northern Australia
This is a 3 staged program to determine the burden of impetigo and GAS pharyngitis in Aboriginal children in northern Australia.
- Stage 1: Pilot a GAS screening program to determine the utility, feasibility and acceptability of such a screening program.
- Stage 2: Establish a prospective cohort of schoolchildren in a high-risk population and undertake monthly surveillance for GAS pharyngitis and impetigo over a 3 year period.
- Stage 3: Rigorous surveillance of a prospective cohort using the established methodology in another jurisdiction.
- The CMR and advanced echocardiography for ARF diagnosis study
This study will evaluate the efficacy of cardiovascular magnetic resonance (CMR) and novel and advanced echocardiographic techniques to identify and quantify myocardial inflammation and valvular thickening as an adjunct to the diagnosis and monitoring of patients with acute rheumatic fever.
Theme 2: Implementation and Translation
- Case management for primordial prevention
An episode of ARF indicates that the aetiological triad of environmental factors, personal susceptibility and GAS strain characteristics have coalesced in a single individual. By extension, that person and their family remain at risk of recurrent or additional episodes of ARF. Interventions to tackle environmental factors (particularly hygiene infrastructure and household crowding) and potentially reduce the burden of GAS may reduce ARF risk. We will explore the theoretical and practical implications of this kind of community case management of ARF.
- Clinical guidelines for ARF and RHD
The inaugural clinical management guidelines for ARF/RHD in Australia were published in 2006 and updated in 2012. Disseminated online, in hard copy, and as phone and tablet applications, the guidelines are the predominant resource for Australian clinicians managing RF and RHD.
i. Updating guidelines
Led by RHD Australia, the third edition of the guidelines will be produced in the second half of the CRE and incorporate all relevant new evidence – including primordial-level prevention, sore throat management, reflect international updates on the Jones Criteria, echocardiographic screening, RHD in pregnancy and practical delivery of tertiary care
ii. Guideline evaluation
Evaluation is needed to understand how resources are used and how they can be improved to streamline management nationwide. Led by the translational arm of the CRE, RHD Australia, we have surveyed the uptake of existing guidelines, continually monitor use of online modules and resources, and will ensure that an evaluation framework is in-built for the third edition of the guidelines.
- Improving delivery of secondary prophylaxis
A randomised trial of a health systems intervention to improve delivery of secondary prophylaxis in ten Northern Territory primary care clinics is currently underway. Initial findings will be available in late 2016. The END RHD CRE will build on these study findings, tackling broader implementation and evaluation of effective interventions on a national scale.
- Echocardiography screening for rheumatic heart disease
i. For early diagnosis
The role of echocardiography screening in RHD control is a subject of national and international contention. In 2012 Australian researchers involved with the END RHD CRE led a global coalition of experts to develop diagnostic definitions of definite and borderline RHD on echocardiographic screening of under 20 years olds. The clinical significance of these early heart valve changes is the subject of ongoing biomedical research and substantial economic, public health and ethics analysis. Results of these studies are now available, and will inform a stakeholder meeting later in 2016 regarding policy recommendations on echocardiographic screening in high-risk settings for asymptomatic RHD. The END RHD CRE is developing policy briefs and working closely with jurisdictional policymakers to adapt existing evidence to their own circumstances.
ii. In pregnancy
Women living with RHD have a greater risk of morbidity and mortality during pregnancy and delivery. Heart valves damaged by RHD are less able to accommodate increased cardiovascular demand in the perinatal period. Women with undiagnosed RHD may develop the first signs of the disease during pregnancy. However, symptoms of deteriorating heart failure may be mistaken for symptoms of late pregnancy, delaying access to medical care. Identifying pregnant women with RHD may allow for improved access to specialist care and improved outcomes. Echocardiography screening – potentially utilising the ultrasound access pregnant women already have for antenatal care – may facilitate early diagnosis in a high risk population. The END RHD.CRE has developed a new study protocol exploring feasibility of echocardiography screening for RHD in high risk pregnant women.
Theme 3: The RHD Community
- Theme 3 Strategies
Theme 3 focuses on bringing together and better understanding the experiences and perceptions of people living with RHD, their community and relevant health system representatives. An understanding of ‘the RHD community’s’ experiences is needed to develop targeted and effective strategies to prevent and manage RHD.
We plan to achieve our aim by focusing on the following objectives:
Developing process and protocols for the END RHD CRE
The RHD Community will begin by implementing best practice processes for activities undertaken within the END RHD CRE, supporting a change in the discourse of how Aboriginal people are treated and represented in research. This will involve preparation of informative materials on engaging with Aboriginal communities and inviting key academics working with Aboriginal communities to share their expertise on community-based participatory action research.
Telling the RHD story
The END RHD CRE will bring together experiences of RHD from the perspective of people living with RHD (PLW RHD and their community). CRE researchers want to determine what is already known about the experiences of PLW RHD; what the gaps in knowledge are, and fill these gaps with appropriately designed research.
This approach will build a comprehensive knowledge centre from existing sources on the knowledge, behaviour, perceptions and attitudes of ARF/SP/RHD from the perspective of PLW RHD and their community. An RHD stakeholder map will inform understanding of existing research activities and opportunities for knowledge integration.
Developing an integrated life course approach to RHD
The END RHD CRE will ultimately develop a life course approach to RHD that examines the biological, behavioural and social processes influencing the lives of people living with RHD over the life-course of the disease from childhood to adulthood. This information will help form a foundation upon which a rationale for action, policy and practice can be built.
Ensuring effective knowledge transition
The END RHD CRE will provide a mechanism for these research findings to change medical practice ensuring that research findings and arising recommendations are communicated effectively to cardiologists, paediatricians, primary care providers and other health care providers who manage PLW RHD.
In the longer term, a translational research project will be developed from the collective outputs of this theme. National and international examples of community-based programs that have experienced good outcomes for PLWRHD will be drawn together for the piloting of new approaches in the short term.
- The South Australian Rheumatic Heart Disease (SACRHD) screening project
The South Australian Childhood Rheumatic Heart Disease screening project (SACRHD) is currently underway to determine the prevalence of RHD in Aboriginal and Torres Strait Islander children in South Australia. This project extends the SACRHD screening project to gain a better understanding of the personal and practical impact of cardiac screening on children, and to determine the level of care provided to children following a screening diagnosis.
- ‘On Track Watch’: a grassroots RHD initiative in the Northern Territory
This study aims to achieve RHD literacy within a remote community in the Northern Territory. This includes preventing cases, detecting ARF and RHD early, and supporting people with ARF/RHD to achieve high adherence to secondary prophylaxis. This community-driven study has arisen after expressions of concern about ARF/RHD in a remote Aboriginal community. The community has requested help in understanding how to prevent ARF/RHD, including establishing a school-based program to identify and treat streptococcal infections, to be alert to any symptoms of ARF, and to support children with ARF/RHD in adhering to secondary prophylaxis. This project will commence in late 2016 and will empower community members in the research process, as well as providing highly valuable information about people’s understandings of ARF and how to prevent it.
- The lived experience of rheumatic heart disease (RHD): synthesising existing key stakeholder knowledge and experience
This project will interview key stakeholders involved in RHD research and service delivery to determine:
- what is already known about the experiences of PLW RHD;
- what the perceived gaps in knowledge are; and
- Recommending appropriate approaches to help address these gaps.
Scoping, documenting and synthesising what is already known, and where the gaps in knowledge are, will inform the design and implementation of more targeted qualitative lived experience research with the RHD Community.