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RHD Resouces

Experts meet for largest study of rheumatic heart disease and pregnancy


Experts from around Australia will converge in Darwin tomorrow at an annual advisory meeting for the largest study conducted across Australia and New Zealand on rheumatic heart disease and pregnancy.

The physiological changes in pregnancy combined with rheumatic heart disease can lead to life threatening consequences to the mother and the baby, who often live in remote Indigenous communities and have limited access to health care.

The study's Lead Chief Investigator, Professor of Public Health, University of Technology Sydney, Professor Elizabeth Sullivan said, 'The study aims to determine the best model of care for pregnant women and their babies and identify targeted improvements in the health care system'.

The study has so far revealed that limited access to specialist health care in remote areas, a high turnover of health staff and multiple layers of health records are key problems in meeting best practice.

An important component of the study is the inclusion of a qualitative arm that documents the experiences of women affected by the disease.

Another of the study's Chief Investigators, Regional Manager of Maternal and Child Health at the Institute of Urban Indigenous Health, Professor Sue Kruske said, 'We have begun to capture the experiences of pregnant women with rheumatic heart disease to understand how the disease impacts them during pregnancy. If we are to successfully provide care for these women, this is just as important as the medical management side'.

The study is working with key industry members to ensure the research findings will be translated into changes in health practice at the completion of the study.

The advisory meeting will review the research data collected from Australia and New Zealand, including experiences and perspectives from both pregnant women and health workers.

Rheumatic heart disease is commonly undiagnosed, however due to the increased pressure on the heart in pregnancy it can reveal itself.

Australia has one of the highest recorded rates of rheumatic heart disease in the world among Aboriginal and Torres Strait Islander people.

Maori and Islander populations are most affected by the disease in New Zealand.

Media contact
Emmanuelle Clarke, Senior Communications Officer 0408 801 640,

Background information: Rheumatic heart disease in pregnancy study
The Australian Government's National Health and Medical Research Council fund the study.
The mixed methods research includes a quantitative study with nearly 300 maternity units across Australia and New Zealand and a qualitative study exploring women's journey with rheumatic heart disease. It aims to provide an evidence base with a view to improving clinical care and outcomes for women with rheumatic heart disease in pregnancy and their babies. It will investigate the largest population based group of pregnant women with rheumatic heart disease 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 rheumatic heart disease in pregnancy, based on working with those who experience rheumatic heart disease and its impact. It will inform approaches to rheumatic heart disease in pregnancy in Australia and New Zealand and internationally with other rheumatic heart disease stakeholders in the Pacific region, and have direct benefit to over 1500 disproportionately Indigenous women with rheumatic heart disease likely to give birth in Australia and New Zealand over the next ten years.