Rheumatic heart disease (RHD) is a major health problem in Aboriginal communities. Acute Rheumatic Fever (ARF) is an autoimmune reaction to group A streptococcal (GAS) infection mostly affecting children 6-14 years of age. Recurrent episodes of ARF lead to cumulative heart valve damage and the development of RHD. RHD is a chronic, sometimes fatal, disease that often requires heart valve surgery. ARF and RHD are particularly prevalent in remote Aboriginal communities in Australia's Northern Territory who have one of the highest rates of ARF in the World and RHD affects approximately 25 Aboriginal people in every 1,000. RHD especially affects adolescents and young adults with approximately 45% of Indigenous people requiring heart valve surgery in Australia being less than 25 years old.
The mixed methods research includes a quantitative study with nearly 300 maternity units across ANZ and a qualitative study exploring women's journey with RHD. It aims to provide an evidence base with a view to improving clinical care and outcomes for women with RHD in pregnancy and their babies. It will investigate the largest population based group of pregnant women with RHD ever systematically studied globally and outline patterns of health risk, diagnosis, course, management and pregnancy outcomes.
The study will enable benchmarking to identify key attributes of successful, culturally safe models of health care for women with RHD in pregnancy, based on working with those who experience RHD and its impact. It will inform approaches to RHD in pregnancy in ANZ and internationally with other RHD stakeholders in the Pacific region, and have direct benefit to over 1500 disproportionately Indigenous women with RHD likely to give birth in ANZ over the next ten years.
Geraldine Vaughan, National Coordinator
T: 02 9382 1564 E: firstname.lastname@example.org
New Zealand Research Coordinator
Kylie Tune, Northern Territory Coordinator
Chief Investigators: Elizabeth Sullivan, Jonathan Carapetis, Warren Walsh, Michael Peek, Marie Claire McLintock, Sue Kruske
Funder: National Health and Medical Research Council (NHMRC)
Dates: 2012 – 2016