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Telethon Kids, END RHD | Pat Turner, Jonathan Carpetis and Raychelle McKenzie
- 1. Ending rheumatic heart disease for the next generation Ms Pat Turner AM Professor Jonathan Carapetis AM Ms Noeletta McKenzie Ms Raychelle McKenzie
- 2. The RHD Endgame Strategy: Research-backed, community driven solutions to end RHD in Australia Professor Jonathan Carapetis AM Director, Telethon Kids Institute Co-Chair, END RHD
- 3. What is Rheumatic Heart Disease?
- 5. Primordial prevention Tertiary care Primary prevention Secondary prevention Strep A vaccine Treatment/prevention/control of sore throat and skin sores ARF diagnosis and new treatments Social, environmental and structural determinants of health Self management and lived experience RHD in pregnancy Early echo diagnosis of RHD Improved adherence to antibiotics New penicillin formulations
- 6. RHD Endgame Strategy: Research and advocacy Technical, clinical and research outputs Advocacy, policy and translational outputs RHD Endgame Strategy
- 9. 1. Create a national, Aboriginal and Torres Strait Islander-led structure to drive implementation of the Endgame
- 10. 2. Resource community-led, co-designed, place-based solutions to local priorities
- 12. 3. Invest in co-designed community environmental health and infrastructure solutions
- 13. 4. Implement comprehensive skin and throat programs for high risk communities
- 14. 5. Guarantee the best quality care for people with existing RHD
- 15. Modelled effect of RHD Endgame strategies on RHD prevalence Baseline Crowding HLPs/ environmental health Primary prevention Secondary prevention
- 16. Modelled effect of RHD Endgame strategies on RHD mortality Baseline Crowding HLPs/ environmental health Primary prevention Secondary prevention
- 18. Ray Ray’s Story Ms Raychelle McKenzie Ms Noeletta McKenzie
Editor's Notes
- 1. Create a national, Aboriginal and Torres Strait Islander-led structure to drive implementation of the Endgame. 2. Resource community-led, co-designed, place-based solutions to local priorities. 3. Invest in co-designed community environmental health and infrastructure solutions. 4. Implement comprehensive skin and throat programs for high risk communities. 5. Guarantee the best quality care for people with existing RHD
- - Facilitate a coordinated approach to addressing RHD across Australia; and - Engage Aboriginal and Torres Strait Islander people as active partners Advocate around the social, structural and systemic considerations which drive the burden of RHD in conjunction with a range of Commonwealth, jurisdictional and local government departments; Provide technical support for community-level action including health promotion, clinical advice, policy and protocol development; Have capacity to support place-based grants to high burden communities; Develop and maintain education and training resources; Regularly monitor and review progress towards the agreed priorities.
- - Increase awareness of Strep A and ARF and improve health seeking behaviour; - Treat Strep A infections and reduce ARF incidence; - Ensure early and accurate diagnosis of ARF; - Provide high quality secondary prevention. Provide resources for activities, events and training led by community “champions”, emphasising the voices of community leaders and those living with RHD; Develop community health promotion campaigns to reduce transmission of skin sores and sore throats, and increase and health seeking to treat these conditions; Grow AHP workforce through funded training and retention strategies; Provide sustainable funding for comprehensive primary care in the Aboriginal Community Controlled Health Sector; Review and strengthen capacity for ACCHO professionals in primary prevention, ARF and RHD diagnosis and management; Increase and sustain funding for roles within primary care with a focus on preventing ARF recurrences and progression of disease; Identify thresholds for echocardiography screening and ensure follow-up care is available if community screening is recommended.
- - Reduce the burden of Strep A in high risk communities; - Improve awareness of Strep A skin and throat infections and reduce barriers to seeking and obtaining treatment; - Improve clinical management for sore throat and skin sores. Develop resources and technical materials for comprehensive skin health programs, adapted by communities for the local context Explore opportunities to increase access to sore throat and skin sore assessment and treatment through; Flexible appointment systems and after-hours services; Provision of health care services at schools; Provision of transport to clinics. Consult, coordinate and deliver comprehensive Strep A outreach activities for high risk communities; Commission and oversee development of decision support modules for skin sores and sore throats for primary care.
- - Reduce the burden of Strep A in high risk communities; - Improve awareness of Strep A skin and throat infections and reduce barriers to seeking and obtaining treatment; - Improve clinical management for sore throat and skin sores. Develop resources and technical materials for comprehensive skin health programs, adapted by communities for the local context Explore opportunities to increase access to sore throat and skin sore assessment and treatment through; Flexible appointment systems and after-hours services; Provision of health care services at schools; Provision of transport to clinics. Consult, coordinate and deliver comprehensive Strep A outreach activities for high risk communities; Commission and oversee development of decision support modules for skin sores and sore throats for primary care.
- - Support people living with RHD to live life to its full capacity; - Provide excellence in clinical outcomes for people living with RHD; - Strengthen pre-op and post-op support; - Improve care of co-morbidities; - Reduce mortality from RHD. Fund Aboriginal and Torres Strait Islander positions within primary health care services to coordinate care across sectors for people living with RHD; Resource regional coordinators in high burden areas for CQI and health promotion Develop transition model of care for adolescents with RHD; Develop pathways for living with RHD during pregnancy; Coordinate peer support networks, programs and events
- Strategies 1. Crowding: Reduce crowding by building new or extending existing housing. 2. HLPs/EH: Improve hygiene by improving health hardware (HLP) and running accompanying health promotion campaigns. 3. Primary prevention: Improve timely (A) treatment of Strep A infections and (B) diagnosis of first ARF by implementing health promotion for people to seek care (for infections and ARF), Strep A outreach programmes, and improved PHC management of patients. Combined, we assume 80% reduction in risk of ARF due to penicillin in an additional 30% of the population (estimating that health seeking behaviour will increase from a baseline level of 20% to an improved level of 50%) and reduction in progression from undiagnosed ARF (now diagnosed) to RHD - the latter might also be considered secondary prevention. 4. Secondary prevention: Improve adherence to SP by improving PHC quality/staffing, register capacity, enhanced responses (e.g., echo), empowering self-management, and transition care. Improved adherence results in reduced risk of progression from ARF to mild RHD and from mild RHD to severe RHD. Note that each strategy is in addition to all of the previous strategies (i.e., +Hygiene is on top of reduced crowding). Reduction in risk from interventions Reduce crowding; 39% reduction in infections (lit review) Improve EH/HLP; 34% reduction in infections (lit review) Primary prevention: Increase health seeking behaviour for infections by 30%; 24% reduction in ARF* & Increase health seeking behaviour for ARF; 10% reduction in progression to RHD in first 3 months ARF dx (but increase in cost of ‘silent’ ARF) Improve SP adherence by 30%; 4.8% reduction in progression from ARF to mild RHD** & 9.9% reduction in the progression from mild to severe RHD***
- Strategies 1. Crowding: Reduce crowding by building new or extending existing housing. 2. HLPs/EH: Improve hygiene by improving health hardware (HLP) and running accompanying health promotion campaigns. 3. Primary prevention: Improve timely (A) treatment of Strep A infections and (B) diagnosis of first ARF by implementing health promotion for people to seek care (for infections and ARF), Strep A outreach programmes, and improved PHC management of patients. Combined, we assume 80% reduction in risk of ARF due to penicillin in an additional 30% of the population (estimating that health seeking behaviour will increase from a baseline level of 20% to an improved level of 50%) and reduction in progression from undiagnosed ARF (now diagnosed) to RHD - the latter might also be considered secondary prevention. 4. Secondary prevention: Improve adherence to SP by improving PHC quality/staffing, register capacity, enhanced responses (e.g., echo), empowering self-management, and transition care. Improved adherence results in reduced risk of progression from ARF to mild RHD and from mild RHD to severe RHD. Note that each strategy is in addition to all of the previous strategies (i.e., +Hygiene is on top of reduced crowding).