Reference: 2013-009 - A national population based study of rheumatic heart disease in pregnancy

Researchers: Prof Elizabeth Sullivan (National Perinatal Epidemiology and Statistics Unit); Prof Jonathan Carapetis (Telethon Institute of Child Health Research); Dr Warren Walsh (Prince of Wales Hospital); Prof Michael Peek (The University of Sydney Sydney Medical School Nepean); Dr Marie Claire McLintock (National Women’s Health Auckland City Hospital); Prof Sue Kruske (University of Queensland)

Funding: NHMRC Project Grant 1024206

Project summary: Rheumatic heart disease (RHD) in pregnancy (a serious consequence of repeated episodes of rheumatic fever, caused by Group A streptococcus) results in heart valve damage. It is a preventable disease and neglected public health problem, associated with poverty and overcrowding. Aboriginal and Torres Strait Islanders in remote regions of Australia and Māori and Pacific Islander peoples in New Zealand have among the highest documented rates of RHD in the world. A group of Aboriginal and non-Aboriginal researchers based at UNSW has received a four-year NHMRC funding grant (2012-2016) to study RHD in pregnancy using the AMOSS (Australasian Maternity Outcomes Surveillance System).

Increased cardiac demands of pregnancy (including up to 50% increased blood volume) can unmask previously undiagnosed RHD and exacerbate symptoms, particularly where there is mitral stenosis, or for women with mechanical heart valves. Yet little research has been carried out with clinical recommendations largely based on generic studies of severe disease in non-pregnant adults. Optimal management can be hampered by limited cardiac services in remote areas, turnover of health staff, and delayed attendance at clinics due a lack of trust and sense of cultural safety.

The mixed methods research includes a quantitative study with nearly 300 maternity units across ANZ and a qualitative study (in NT and NSW) exploring women’s journey with RHD. It will 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 the disproportionately Indigenous women with RHD.

Progress: Ongoing