Between 3rd - 5th May 2018, researchers from Australia, New Zealand, South Africa, and the United States (representing their Uganda collaboration) convened in Fremantle, Western Australia to attend the Strep A Spectrum Meetings: from Science to Strategy.
This report focuses on the meeting held on Friday 4th May, hosted by the End Rheumatic Heart Disease Centre of Research Excellence (END RHD CRE), headquartered at The Kids Research Institute Australia.
Over 60 investigators, collaborators, and representatives from the broader community attended the meeting, ensuring all aspects of the RHD and Strep A research community were well represented.
The face-to-face meeting was convened with the following specific objectives:
- Provide international context to RHD control efforts.
- Report on progress of some of the current END RHD CRE-funded research projects and others from around the world (summarised under presentations below).
- Identify research gaps and outstanding needs.
- Process and review the Endgame Strategy.
- Foster new relationships, potential collaborations, and grant opportunities.
Presentations
A brief outline of the presentations is given below, however, we ask that this information is not further distributed without the express permission of the content authors. Please email us if you require further information.
Session 1 - International experiences to end rheumatic heart disease
Introduction
Presented by Bongani Mayosi
A brief overview touching on the Addis Ababa communique, which outlines seven key actions to eradicate RHD in Africa. The presentation finished with definitions of eradication, elimination, and control, and with a pledge of support for disease elimination.
Comprehensive rheumatic heart disease control in Fiji - turning the tide on rheumatic heart disease in Fiji Islands
Presented by Jonathan Carapetis on behalf of Joe Kado
The burden of Strep A and RHD is significant in Fiji. Data coming out of research in Fiji has driven advocacy at both local and international levels, delivering much needed funding to the Fijian RHD prevention and control programme. Significant gaps remain in both funding and knowledge, partially addressed by the Cure Kids NZ Ministry of Foreign Affairs and Trade RHD program outputs, aligned with the Fiji RHD control policy.
The creation of community engagement and advocacy peer support groups have been well received, leading to people living with RHD and carers driving advocacy in Fiji. However, there are no firm data as to whether the groups are having a positive impact on adherence.
Building towards comprehensive RHD control in Uganda
Presented by Andrea Beaton
Political unrest in Uganda during the 70s and 80s left the health system in total disarray. Establishment of the Uganda Heart Institute (UHI) led to Uganda as a global leader in RHD control and research with partnerships throughout the world. The National RHD registry is providing burden of disease data to inform improvements in tertiary, secondary, primary, and baseline health systems.
The importance of investment in human resources was highlighted, along with improved medical management and health care worker training in multiple areas including, but not limited to: blood clotting (INR) monitoring; balloon mitral valvuloplasty; and use of handheld echo screening devices.
Other areas of continuing research include: impact on children’s quality of life through early diagnosis - even in asymptomatic cases; quantifying and addressing Strep A; a telemedicine consultation pilot study; and the determinants of patient-driven improvement in care. The presentation finished by identifying barriers to success and strengths to continue building upon. It is clear that a research focus has led to significant health systems and workforce capacity improvements.
New Zealand experience with research to end ARF & RHD
Presented by Michael Baker
NZ’s burden of acute rheumatic fever (ARF) and RHD are concentrated in the North Island and predominantly in Māori and Pacific Island communities. Prof Baker presented on a number of current NZ studies including: the NZ Rheumatic Fever Risk Factors Study, which is looking at modifiable risk factors; and understanding GAS pharyngitis and skin infections as causes of ARF - both studies are at the analysis stage, but preliminary findings were presented. Additionally, Prof Baker discussed outcomes from the evaluation of the Rheumatic Fever Prevention Program in NZ, and from the trial of probiotics (oral BLIS) to prevent ARF.
#EndRHD South Africa
Presented by Liesl Zuhlke
Analysis of key datasets, national guidelines, and surveillance data are showing decreasing incidence and mortality from RHD, however, the burden of RHD still remains. As such, the requirement for continental and international scientific and policy collaborations, and tool and capacity building, were highlighted. Alongside this recent research, there is a need to bridge the knowledge - practice gap in South Africa. However, there are a number of new research areas including AFROStrep, the lived experience, valve development, surgical programs, and outreach. Unfortunately, amongst the success stories of the programs such as Listen To My Heart, there remain the issues of inadequate response from policymakers, and the struggle to empower communities and strengthen health literacy and agency within the country - the importance for integrated policy and action approaches to ARF and RHD is crucial.
Session 2 - Developing an Endgame for RHD in Australia
Overview of the Endgame Strategy structure
Presented by Rosemary Wyber
The presentation moved from a brief outline of the early days of the END RHD CRE to an overview of the intended major outputs of the CRE - the Endgame Strategy, Endgame Report, and Endgame Snapshot, each intended for different audiences within the broader Australian community. The proposed chapters and content of the Endgame Report were broadly outlined, along with current timelines. The final report will be delivered to Government in February 2020, with preliminary recommendations to be circulated for feedback well before then. Noted was that the CRE Endgame outputs could be informed by other successful disease-specific programs and reports, for example, the Roadmap to Close the Gap for Vision. Rosemary continued on to talk about key questions that needed to be addressed as a basis for the proposed Delphi consensus process and what was to be asked of the delegates in the focus groups addressed later in this report.
Burden of RHD: comprehensive evidence to drive the RHD Endgame
Presented by Judy Katzenellenbogen
Having recently received a new grant and with work contributing towards the initial CRE grant, Judy’s presentation discussed the way forward for her project: to characterise the epidemiology and management of ARF/RHD in five jurisdictions in Australia using linked health data. Initial analysis work has started on the Western Australian data, which will be used as a test case for the rest of the multijurisdictional data; the body of research will inform the first chapter of the Endgame Report.
Impact of RHD: researching the lived experience
Presented by Minitja Marawili, Yunutju Gondarra, and Emma Haynes
On Track Watch (OTW) is an ongoing community-based participatory research project in Yilpara in the Northern Territory - an area which has particularly high incidences of ARF and RHD. These community-based researchers shared their experiences as they contribute to developing culturally appropriate consent processes and research methods, whilst leading to sustainable capacity building in research through the OTW program.
Causes of ARF & RHD: sore throats and skin infections
Presented by Asha Bowen
It was highlighted that Oceania has one of the highest global rates of impetigo and scabies in children. In Australia, one in two Aboriginal or Torres Strait Island children have skins sores at any one time. The questions surrounding the potential of other causal links of Strep A, for instance impetigo and ARF, were raised and corresponding potential treatments currently being investigated were put forward. Dr Bowen presented an update on the SToP trial (See, Treat, Prevent skin sores and scabies) currently under way in the Kimberley. This encompassed a brief look at the clinical treatment regimen being developed, including environmental health and health promotion activities to reduce the burden of skin infections in this area.
Australian guideline for prevention, diagnosis and management of ARF and RHD
Presented by Rebecca Slade
This presentation provided a brief update on the proposed third edition of the ‘Australian guidelines for prevention, diagnosis and management of acute rheumatic fever and rheumatic heart disease’ and the recently developed diagnostic calculator app produced by RHDAustralia.
END RHD Demonstration Communities
Presented by Jonathan Carapetis on behalf of Anna Ralph
This presentation addressed how communities, service providers, and researchers can take a more comprehensive approach towards addressing RHD in Australia. Various essential elements are required to make this approach work, in particular the need for the program to be founded and supported within the community, and centred around those living with RHD and their families. There are currently two Demonstration Communities in the NT.
One voice to END RHD: the advocacy agenda
Presented by Glenn Pearson and Catherine Halkon
This presentation outlined the work of the END RHD Coalition, which works to raise the profile of RHD as a national health priority, and with the aim of bringing together a range of stakeholders, and focus on advocacy, policy, and research translation outputs. END RHD ensures that those affected most by RHD, Aboriginal and Torres Strait Islander people, are firmly involved in all aspects of their journey to receive the fundamental right to the highest standard of health.
Recommendations, targets, and modelling
Presented by Jeff Cannon
This presentation centred around a provisional model of RHD being based on the progression between major health states in the aetiology and adverse outcomes of this disease: Strep A infection, ARF, RHD (subclinical and mild, moderate or severe), heart failure, and premature mortality. Jeff is currently refining the probability of progressing to each health state, acknowledging that some probabilities will be difficult to estimate, but sensitivity analyses will be used to evaluate the impact of uncertainty in these estimates on the model outcomes.
Outcomes of the model will be estimates of the health (in DALYs) and economic burden of: incident infections or ARF and RHD; prevalent ARF; and subclinical and clinical RHD.
Improvement in outcomes from the introduction of new, or enhancement of existing, prevention strategies will be estimated by adjusting the relevant progression probabilities, and uncertainty in strategy effectiveness will be evaluated through sensitivity analyses.
Focus Groups
The delegates were organized into five groups to establish researcher opinions about strategies to reduce the burden of RHD. The aim was to develop a ‘long list’ of possible actions, and a ‘short list’ of priority actions to reduce the incidence of ARF and RHD and to improve clinical outcomes in RHD.
The five focus groups were:
- Social determinants of health
- Primary prevention
- Tertiary care
- Community worker scoping
- Epidemiology
Feedback from the groups was presented for discussion, highlighting the importance of community engagement, and understanding the lived experience of RHD (including: determinants of health seeking behaviours; understanding the sore throat story; supporting community workers to engage people living with RHD; supporting people to continue secondary prophylaxis; and facilitation of transition care for young people and adolescents with RHD). The outcome from the groups will be used to advocate for immediate priorities and as the basis for further consultation to inform the Endgame Report.
Meeting outcomes
- International experience confirms that RHD control is possible and that a critical mass of political leadership, community engagement, clinical services, and research support are usually needed to have an impact.
- People and communities living with RHD in Australia are the critical stakeholders in addressing this disease.
- Knowledge gaps still remain. Some of these are being addressed (better understanding the burden of disease, clarifying the modelled progress of disease) and new clinical guidelines are being developed. The Endgame Report will synthesise existing knowledge and be coupled with consultation about recommendations to be made to government.