Rheumatic heart disease in pregnancy
[Data collection for this study is complete. Analysis in progress]
RHD - 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 Maori and Pacific Islander peoples in New Zealand have among the highest documented rates of RHD in the world. In the Northern Territory in 2008, over 2.5% of 25-34 and over 3% of 35-44 year olds had RHD1.
What we know
Increased cardiac demands of pregnancy (including 30-50% increased blood volume) often unmask undiagnosed RHD. The impact of pregnancy can be particularly severe and sometimes catastrophic for women who have mechanical heart valves. The choice of anticoagulation medication for these women provides clinical dilemmas as all anticoagulant options carry maternal and/or fetal risks.
Yet the impact of RHD on women in pregnancy is under-researched. Most recommendations are based on generic studies of severe RHD in non-pregnant adults, and there are even fewer about the disease in pregnant Aboriginal and Torres Strait Islander and Maori and Pacific Islander women.
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. Consequently, even advanced valvular disease may be unrecognised.
A group of Aboriginal and non-Aboriginal researchers based at UNSW received a four-year NHMRC funding grant (2012-2016) to study RHD in pregnancy using the AMOSS (Australasian Maternity Outcomes Surveillance System).
The RHD in pregnancy study
The mixed methods research includes a quantitative study with nearly 300 maternity units across ANZ and a qualitative study exploring Northern Territory 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 is the first bi-national study of pregnant women with RHD and will 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.
The RHD in pregnancy study extends the existing strong AMOSS partnerships in maternity care to include cardiac, Aboriginal, remote and primary health care services, including collaborations with RHD Australia, jurisdictional control programs and other RHD advocacy groups such as RHD Action.
Surveillance and population-based descriptive study January 2013 - December 2014. Data analysis and papers in progress.
Data analysis in progress
Perspectives on RHD
Rhonda’s story – preventing rheumatic heart disease
Rhonda Toomey, Aboriginal Health Worker, talks about her experience with rheumatic fever as a child, and the importance of secondary prophylaxis and ongoing management in preventing rheumatic heart disease
With thanks to Rhonda, Linda Bootle and the team at Western NSW Local Health District Aboriginal Maternal and Infant Health Service.
Rheumatic heart disease in pregnancy: the importance of awareness and early diagnosis
Melissa Belfanti, Midwife talks of caring for a woman with undiagnosed RHD
With thanks to Melissa, Linda Bootle and the team at Western NSW Local Health District Aboriginal Maternal and Infant Health Service.
Professor Elizabeth Sullivan, Principal Investigator AMOSS, Professor of Public Health, Assistant Deputy Vice-Chancellor, University of Technology Sydney and Conjoint Professor, UNSW Medicine, New South Wales
Professor Lisa Jackson Pulver, CI AMOSS, ProVice Chancellor Engagement and Aboriginal and Torres Strait Islander Leadership, Western Sydney University, New South Wales
Professor Jonathan Carapetis, Director, Telethon Institute for Child Health Research, Western Australia
Dr. Warren Walsh, Cardiologist, University of New South Wales and Prince of Wales Hospital, Sydney
Professor Michael Peek, CI AMOSS, Associate Dean, Department of Obstetrics and Gynaecology, Medical School, College of Medicine, Biology and Environment, The Australian National University and Centenary Hospital for Women and Children, Australian Capital Territory
Dr. Claire McLintock, CI AMOSS, Obstetric physician and haematologist, National Women's Health, Auckland City Hospital, New Zealand
Dr. Suzanne Belton, Senior Lecturer, Menzies School of Health Research and Charles Darwin University, Northern Territory
Professor Alex Brown, Indigenous Health Theme Leader, South Australian Health & Medical Research Institute (SAHMRI)
Professor Elizabeth Comino, Senior Researcher, Centre for Primary Health Care and Equity, University of New South Wales
Ms Heather D’Antoine, Assistant Director Aboriginal Programs, Menzies School of Health Research, Northern Territory
Dr. Simon Kane, Obstetrician, Lyell McEwin Hospital, Adelaide SA
Dr. Bo Remenyi, Paediatric cardiologist, Royal Darwin Hospital and NT Cardiac
Professor Juanita Sherwood, Academic Director, National Centre for Cultural Competency, University of Sydney, New South Wales
Dr. Sujatha Thomas, Staff Specialist Obstetrics, Royal Darwin Hospital Northern Territory
Ms Geraldine Vaughan, Faculty of Health, University of Technology Sydney, New South Wales
Funding and other support
We gratefully acknowledge our funding partners and participating AMOSS sites.
Funding for this study is through a four year project grant (NHMRC #1024206) 2012-2016.
The University of New South Wales provided support to redevelop the AMOSS site with a Major Research Equipment and Infrastructure Initiative (MREII) Grant in 2013.
Other funding support has been provided through the University of Technology Sydney.
Data collection is supported by AMOSS participating sites.
Thank you to all those who have contributed to this study: from maternity units and midwifery group practices, Aboriginal health, remote health services, cardiac services, RHDAustralia, the jurisdictional RHD programs. And of course, the women who have so generously shared their time and perspectives of living with rheumatic heart disease and the impact on them, their family and community.