Sarah Bukulatjpi Aboriginal Health Practitioner Miwatj Health Aboriginal Corporation

Transcription

1 Sarah Bukulatjpi Aboriginal Health Practitioner Miwatj Health Aboriginal Corporation & Dr Jane Davies NHM&RC Senior Clinical Research Fellow Menzies School of Health Research Consultant Physician Infectious Diseases Royal Darwin Hospital

2 Background epidemiology The sub-genotype C4 story What is the significance of the C4 subgenotype (evolving information) Clinical Vaccine The elephant in the room cross cultural communication

3 Australia wide data VIDRL/Doherty/ASHM mapping data Indigenous Australians make up 9.3% of those living with chronic hepatitis B in Australia Graham et al 2013 Surveillance reports

4 ASHM mapping report

5 ASHM mapping report

6 Molecular epidemiology B G A F1 H F2 E A2 A2 A2 D D D3 D D A4 A5 E A3 E D1 D1 D2 D5 A1 B2 C2 B2 I C1 C5 B3 D1 C1 C1 C2 B5,C5 B1 F1 F4 F3 F2 D3 A1 A1 Novel variant c *A1, D2, D3, D7, E C3 Adapted from Schaefer, S. World J Gastroenterol 2007.

7 CHARM NT

8 Th Education tool CHARM 204 patients enrolled All Aboriginal 39 communities Single genotype identified C4 single serotype ayw3

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12 Recombination analysis

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14 Baseline recruitment Demographics, clinical, laboratory details HBV viral load + genotype +/- FGS Retrospective follow up 2010 to 2015 Longitudinal clinical, laboratory and imaging data Prospective follow up 2016 onwards In conjunction with remote clinics and NT strategy

15 Vaccine concerns Hanna et al north Queensland 239 fully vaccinated 16% no immunity & 6% past infection Wood et al Northern Territory 437 children in ABC study anti core positivity rate of 21% Malcolm et al north Queensland 10 of 14 fully vaccinated had prior infection, 4 active Dent et al - Northern Territory 37 fully vaccinated adolescents 4 active infection, 7 past

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17 Birth cohort analysis HBsAg positivity

18 Headline results

19 Low levels of health literacy Logistics of remoteness Generally asymptomatic Worldview Mistrust in health systems Language Lack of Hep B resources Communication Social determinants of health

20 Plan reflect Patient act observe

21 32 semi structured interviews Key informants (11) People living with chronic hepatitis B (12) Community members (9) 24 Aboriginal individuals Translator offered to all 17 carried out in Yolŋu matha

22 Formal analysis Data immersion Deductive and inductive coding Inductive categories Inductive themes Cultural clarification Organised and managed in Nvivo 10 (QRS) Development of resource True to the results of the analysis Story board Script Game component Multiple iterations Translation Voice overs Dreamedia

23 Knowledge Only your blood can tell the true story Low levels of biomedical knowledge about Hepatitis B Health workers also find it a difficult subject Contextual translation demonstrated some understanding Many misconceptions

24 Perceptions Its like a silent killer I can drop dead any time so I take my tablets and pray Serious disease big sickness The word silent Competing priorities Too complex a problem to tackle

25 Experiences The words are big words, the numbers are not good, and the words are not good. Should be in language. Overwhelmingly the most stressed aspect Communication Yolŋu matha language

26 What people need Visual Interactive The true story enough detail Women s business es/hep_b_story/

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29 Summary of the story so far.. Indigenous people in the Northern Territory with Hepatitis B are exclusively infected with the C4 subgenotype Vaccine appears to prevent sag positive disease and overall prevalence is falling For those born before 1990 prevalence of chronic hepatitis B is significant and Indigenous people are disproportionately affected Culturally appropriate educational tools in language are essential to improving the cascade of care for people living with chronic hepatitis B

30 Acknowledgements Josh Davis Steven Tong Krispin Hajkowicz Sarah Whiting Ben Cowie Scott Bowden Margaret Littlejohn Stephen Locarnini Tina Sozzi Kathy Jackson Ros Edwards Outreach & infectious diseases specialists and registrars at Royal Darwin Hospital Laboratory staff at NT government pathology service & VIDRL

31 The Hep B Story in the Northern Territory Dr Jane Davies Menzies School of Health Research NHMRC Early Career Fellow Royal Darwin Hospital Infectious Diseases & General medicine Physician