Rheumatic heart disease in pregnancy: strategies and lessons learnt implementing a population-based study in Australia

Background The global burden of rheumatic heart disease (RHD) is two-to-four times higher in women, with a heightened risk in pregnancy. In Australia, RHD is found predominantly among Aboriginal and Torres Strait Islander peoples. Methods This paper reviews processes developed to identify pregnant Australian women with RHD during a 2-year population-based study using the Australasian Maternity Outcomes Surveillance System (AMOSS). It evaluates strategies developed to enhance reporting and discusses implications for patient care and public health. Results AMOSS maternity coordinators across 262 Australian sites reported cases. An extended network across cardiac, Aboriginal and primary healthcare strengthened surveillance and awareness. The network notified 495 potential cases, of which 192 were confirmed. Seventy-eight per cent were Aboriginal and/or Torres Strait Islander women, with a prevalence of 22 per 1000 in the Northern Territory. Discussion Effective surveillance was challenged by a lack of diagnostic certainty, incompatible health information systems and varying clinical awareness among health professionals. Optimal outcomes for pregnant women with RHD demand timely diagnosis and access to collaborative care. Conclusion The strategies employed by this study highlight gaps in reporting processes and the opportunity pregnancy provides for diagnosis and re/engagement with health services to support better continuity of care and promote improved outcomes.The authors gratefully acknowledge aid from the Australian National Health and Medical Research Council (NHMRC) project grant #1024206 and NHMRC Postgraduate Scholarship #11332944; University of Technology Sydney Chancellor’s Research Scholarship; and END RHD Centre of Research Excellence, Telethon Kids Institute, University of Western Australia