1. Improving delivery of secondary prophylaxis for rheumatic heart disease in remote NT Aboriginal communities: a randomised trial
Dr Anna Ralph
Infectious Diseases physician, Royal Darwin Hospital
NHMRC Fellow, Menzies School of Health Research
Clinical Director, RHD Australia

2. PhD students and post doc:
Investigators: • Jonathan Carapetis • Graeme Maguire • Ross Bailie • Bart Currie • Adrienne Kirby • Vanessa Johnston • Keith Edwards • Anna Ralph • Alex Brown • Marea Fittock • Christine Connors • Rosalie Schultz • Suzanne Belton
PhD students and post doc:
Alice Mitchell – Transitional care / lived experience
Jess de Dassel – Adherence measures and association with outcomes
Clancy Read
Clair Scrin
David Hendrickx
Project staff:
Jess de Dassel
Kerstin Bycroft
Jane Poole
Sagen Wilks
Melitta O’Donohue

3. Rationale
Delivery of benzathine penicillin G (BPG) every 28 days is highly challenging for health services, affected individuals and their families.
Low proportion receiving adequate number of scheduled injections

4. Interventions at health system level to improve BPG delivery can work

5. Methods

6. 10 clinics, Top End and Centre Sample size >400 at outset
Aims:
Improve the delivery of BPG to individuals with ARF &/or RHD
Specifically, to double the proportion getting ≥80% of scheduled BPG injections from 20 to 40%
Methods
Implementation of a package of activities devised by clinics and supported by project staff to improve delivery of BPG injections in a sustainable way. Embed durable change into health systems.
Activities categorised according to Chronic Care Model
Process – continuous quality improvement
10 clinics, Top End and Centre
Sample size >400 at outset
Mix of government and ACCHs
Different population sizes and levels of remoteness – 1 urban, 9 remote

7. Stepped wedge design Months 1 - 3 Months 4 - 18 Months 19 – 36*
- Baseline data collection
- Planning session
Intensive support phase
Maintenance phase
2013
2014
2015
2016
Months
Sep-Nov
Dec- Feb
Mar-May
Jun-Aug
Dec-Feb
Sites
1 & 2
3 & 4
5 & 6
7 & 8
9 & 10
Project design

9. CLINICAL INFORMATION SYSTEMS SELF-MANAGEMENT SUPPORT
Partner with community organisations to support timely delivery of secondary prophylaxis to ARF/RHD clients
CLINICAL INFORMATION SYSTEMS
SELF-MANAGEMENT SUPPORT
COMMUNITY SUPPORTS
Allocate/confirm and document responsibility for ARF/RHD care among healthcare staff
Establish a multi-disciplinary RHD working group in health centres comprising healthcare staff and key stakeholders
Up-skill healthcare staff in self-management techniques using staff training activities
Monitor the performance of practice team and care system in ARF/RHD care using CQI processes
DELIVERY SYSTEM DESIGN
DECISION SUPPORT
HEALTH SYSTEM
Integrate evidence-based guidelines and decision support aids for ARF/RHD into daily practice
Partner with community organizations to support timely delivery of secondary prophylaxis to ARF/RHD clients
Proposed strategy to promote adherence to ARF/RHD secondary prophylaxis, based on the chronic care model

10. No formal data analysis as yet but feedback from Project Officers from their baseline visits -
Patient understanding of their condition and the treatment is limited
Health providers are not confident they have the necessary training/skills to provide education in a meaningful way
Time is a major issue - clinicians say that they simply do not have the time to spend educating patients/providing outreach. Time is used to give the injection- not to provide the patient with any other service
Fast-tracking processes once clients reach the clinic are not consistently used
Clients can be difficult to locate – many instances of health staff/drivers visiting a home multiple times with no success
Project design

11. Adherence rate
Triage systems / fast track
Changing way recalls are set (to 21 days)
Opportunistic BPG

12. Quarterly feedback report - example

14. Preliminary findings

17. Staff and client experiences of the study
Variable
Results currently being analysed
‘The agency nurse was not aware that one of her roles was RHD coordinator’
Positive: involvement helped engagement with the bigger picture; clinic practices improved
Negative: competing acute care priorities, research fatigue; research an unhelpful distraction
Clients
‘What did you notice was different about getting your injections?’
‘There were new nurses’

18. Staff turnover at the 10 sites during 15 months2 3 4 5 6 7 8 9 10

19. Potential reasons for lack of impact on adherence

21. Territory-wide adherence
Data courtesy of Dr Keith Edwards, Northern Territory RHD Control Program

22. NZ nationwide in 12 months: 4 recurrences out of total 128 cases
Northern Territory ARF Notifications:
NZ nationwide in 12 months: 4 recurrences out of total 128 cases
Confirmed ARF notifications during reporting period
Data courtesy of Dr Keith Edwards, Northern Territory RHD Control Program

23. Case study Community engagement
Huge desire for knowledge – in language, in culturally applicable form.
Knowledge in communities can translate rapidly into action
has led to a School-based initiative and launch of an iphone app in one community

24. Case study

25. Where to next? To improve secondary prevention
Strengthen health systems to function optimally in the face of staff instability
Empower patients in self management
Devise better options than 4-weekly IM injection
To work towards elimination of ARF and RHD as public health problems for Aboriginal people
New primordial and primary preventive strategies

26. Strategies for managing high staff turnover
Resilient systems which cope with staff turnover
Drawing on existing community strengths – patients and their family networks as points of continuity.
Increase self-advocacy.
More Aboriginal Helalth Workers
Better recruitment and retention

28. RHDAustralia online education modules

30. Coping with staff turnover
Need processes which are durable in the face of staff turnover
Patient centred
Patients are not turning over
Patients tend to have predictable patterns of travel between specific sites
Patients want knowledge and engagement
Entrenched clinic processes which can withstand staff turnover