Excess Deaths Associated with Rheumatic Heart Disease, Australia, 2013-2017.
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ABSTRACT:
SUBMITTER: Stacey I
PROVIDER: S-EPMC10756360 | biostudies-literature | 2024 Jan
REPOSITORIES: biostudies-literature
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Excess Deaths Associated with Rheumatic Heart Disease, Australia, 2013-2017.
Stacey Ingrid I Seth Rebecca R Nedkoff Lee L Wade Vicki V Haynes Emma E Carapetis Jonathan J Hung Joseph J Murray Kevin K Bessarab Dawn D Katzenellenbogen Judith J
Emerging infectious diseases 20240101 1
During 2013-2017, the mortality rate ratio for rheumatic heart disease among Indigenous versus non-Indigenous persons in Australia was 15.9, reflecting health inequity. Using excess mortality methods, we found that deaths associated with rheumatic heart disease among Indigenous Australians were probably substantially undercounted, affecting accuracy of calculations based solely on Australian Bureau of Statistics data. ...[more]
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Project description:BackgroundAustralia, although a high income economy, carries a significant burden of rheumatic heart disease (RHD). Acute rheumatic fever (ARF) and RHD are endemic in the Indigenous population. Immigrants from low/lower-income countries ('non-Indigenous high-risk') are also at increased risk compared with 'non-Indigenous low-risk' Australians. This study describes the utilisation of surgical and percutaneous procedures for RHD-related valve disease among patients aged less than 50 years, from 2002 to 2017.MethodsA descriptive study using data from the 'End RHD in Australia: Study of Epidemiology (ERASE) Project' linking RHD Registers and hospital inpatient data from five states/territories, and two surgical databases. Trends across three-year periods were determined and post-procedural all-cause 30-day mortality calculated.ResultsA total of 3900 valves interventions were undertaken in 3028 procedural episodes among 2487 patients. Over 50% of patients were in the 35-49 years group, and 64% were female. Over 60% of procedures for 3-24 year-olds were for Indigenous patients. There were few significant changes across the study period other than downward trends in the number and proportion of procedures for young Indigenous patients (3-24 years) and 'non-Indigenous/low risk' patients aged ≥35 years. Mitral valve procedures predominated, and multi-valve interventions increased, including on the tricuspid valve. The majority of replacement prostheses were mechanical, although bioprosthetic valve use increased overall, being highest among females <35 years and Indigenous Australians. All-cause mortality (n = 42) at 30-days was 1.4% overall (range 1.1-1.7), but 2.0% for Indigenous patients.ConclusionsThe frequency of cardiac valve procedures, and 30-day mortality remained steady across 15 years. Some changes in the distribution of procedures in population groups were evident. Replacement procedures, the use of bioprosthetic valves, and multiple-valve interventions increased. The challenge for Australian public health officials is to reduce the incidence, and improve the early detection and management of ARF/RHD in high-risk populations within Australia.
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Project description:BackgroundIn Victoria, Australia, children with Pacific Islander ('Pacific') ethnicities are overrepresented in acute rheumatic fever (ARF) and rheumatic heart disease (RHD). In June 2023, ARF and RHD became notifiable in Victoria. To inform public health and clinical practice, we described young Pacific patients' and their caregivers' understandings and experiences of ARF/RHD, and identified possible ways to improve the delivery of clinical care.MethodsWe established a project reference group including local Pacific people to guide this research. Pacific patients who attended an ARF/RHD clinic at The Royal Children's Hospital, Melbourne, were invited to participate, as were their caregivers. A Samoan researcher conducted qualitative 'talanoa' (conversational) interviews with patients and caregivers. A second researcher conducted semi-structured interviews with treating clinicians and other stakeholders. Interview transcripts underwent thematic analysis guided by the Tuilaepa Youth Mentoring Services Pacific Youth Wellbeing Framework.ResultsWe interviewed 27 participants. This included nine patients and nine caregivers, all of whom were Samoan. These 18 participants expressed a desire to learn more about ARF/RHD and connect with other affected people. While some shared their experiences of having well-liked and trusted healthcare providers, patients often struggled to have two-way clinical conversations. The need to support clinicians working with high-risk populations to improve their awareness of ARF was identified. Receiving treatment on time was a top priority for affected families, despite injection pain, inconvenience and financial costs. The need to support continuity of care for young adult patients was raised by participants.ConclusionsPacific people living with ARF/RHD and their families require additional support to receive high quality management in Victoria. Introducing a patient register and a specialist RHD nurse would enhance access to treatment, as would removing cost barriers, improving clinical awareness of ARF/RHD and creating Victoria-specific patient resources.
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Project description:BackgroundThe incidence of rheumatic heart disease (RHD) among Indigenous Australians remains one of the highest in the world. Many studies have highlighted the relationship between the social determinants of health and RHD, but few have used registry data to link socioeconomic disadvantage to the delivery of patient care and long-term outcomes.MethodsA retrospective study of individuals living with RHD in Far North Queensland (FNQ), Australia between 1997 and 2017. Patients were identified using the Queensland state RHD register. The Socio-Economic Indexes for Areas (SEIFA) Score-a measure of socioeconomic disadvantage-was correlated with RHD prevalence, disease severity and measures of RHD care.ResultsOf the 686 individuals, 622 (90.7%) were Indigenous Australians. RHD incidence increased in the region from 4.7/100,000/year in 1997 to 49.4/100,000/year in 2017 (p<0.001). In 2017, the prevalence of RHD was 12/1000 in the Indigenous population and 2/1000 in the non-Indigenous population (p<0.001). There was an inverse correlation between an area's SEIFA score and its RHD prevalence (rho = -0.77, p = 0.005). 249 (36.2%) individuals in the cohort had 593 RHD-related hospitalisations; the number of RHD-related hospitalisations increased during the study period (p<0.001). In 2017, 293 (42.7%) patients met criteria for secondary prophylaxis, but only 73 (24.9%) had good adherence. Overall, 119/686 (17.3%) required valve surgery; the number of individuals having surgery increased over the study period (p = 0.02). During the study 39/686 (5.7%) died. Non-Indigenous patients were more likely to die than Indigenous patients (9/64 (14%) versus 30/622 (5%), p = 0.002), but Indigenous patients died at a younger age (median (IQR): 52 (35-67) versus 73 (62-77) p = 0.013). RHD-related deaths occurred at a younger age in Indigenous individuals than non-Indigenous individuals (median (IQR) age: 29 (12-58) versus 77 (64-78), p = 0.007).ConclusionsThe incidence of RHD, RHD-related hospitalisations and RHD-related surgery continues to rise in FNQ. Whilst this is partly explained by increased disease recognition and improved delivery of care, the burden of RHD remains unacceptably high and is disproportionately borne by the socioeconomically disadvantaged Indigenous population.
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Project description:IntroductionPreventable rheumatic heart disease (RHD) deaths continue to occur in Australia, with Aboriginal people disproportionately affected. Despite research into structural drivers and the lived experience of people with RHD, and national guidelines focusing on RHD prevention and treatment, recent coronial inquests have highlighted that systemic failures are ongoing. Few studies describe RHD service delivery and/or mortality within the Western Australian (WA) context.ObjectiveThis study aimed to integrate quantitative information regarding RHD-related deaths in WA between 2012 and 2021 with qualitative interview data to identify system-level opportunities for the prevention of RHD-related mortality in the WA health care setting.DesignUsing quantitative data from the WA RHD register, a descriptive analysis of the clinical and demographic characteristics of RHD patients aged < 65 years was conducted, stratified by vital status. Thematic qualitative analysis of RHD stakeholder interviews was conducted in parallel, capturing systemic factors perceived to prevent or contribute to RHD-related mortality in WA.FindingsLimited health service contacts were documented for the 60 registered-recorded deaths among people with RHD. Interviewees emphasised that access to appropriate care was vital to prevent mortality. Passionate healthcare providers connect patients with care by fostering trusting relationships, but logistical, socio-cultural and care quality barriers continue to hamper connections.ConclusionSystemic change is needed in WA to support motivated providers and ensure that efforts to reduce RHD mortality do not rely on individual initiatives. This study contributes evidence for the need to improve RHD program design by prioritising patient-provider connections, empowering, and resourcing providers to effectively engage with RHD patients.
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Project description:During the 2008-2012 pertussis epidemic in Australia, pertactin (Prn)-negative Bordetella pertussis emerged. We analyzed 78 isolates from the 2013-2017 epidemic and documented continued expansion of Prn-negative ptxP3 B. pertussis strains. We also detected a filamentous hemagglutinin-negative and Prn-negative B. pertussis isolate.
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Project description: Not available
| S-EPMC7510718 | biostudies-literature
Project description:BackgroundThis report evaluates results of a screening program on prenatal detection of congenital heart defects in a geographical cohort of western Sweden between January 1st, 2013 and June 31st, 2017. During the study period 88,230 children were born in VGR.MethodsRetrospective data on pregnant women from the Västra Götaland region that were referred to fetal cardiologists in Gothenburg were retrieved. To determine prenatal detection rate, all neonates who underwent surgery or catheter intervention for a critical congenital heart defect born between January 1st, 2014 and December 31st, 2016 were included. The four-chamber view was implemented into the routine scan in 2009 and implementation of the ISUOG guidelines, including the outflow tracts, started in the region in 2015.Results113 fetuses received a prenatal diagnosis of a major congenital heart defect. 89% of these were referred because of a suspected cardiac malformation and 88% were diagnosed before 22 completed weeks. 59% of the patients diagnosed before 22 completed weeks opted for termination of pregnancy. During 2014-2016, 61 fetuses had a prenatal diagnosis of a critical congenital heart defect and a further 47 were diagnosed after birth, hence 56% were diagnosed prenatally, 82% for those which had a combination with an extracardiac abnormality and/or chromosomal aberration compared to 50% if an isolated critical congenital heart defect was diagnosed. For single ventricle cardiac defects such as hypoplastic left heart syndrome, double inlet left ventricle and tricuspid atresia, the detection rate was 100%. The detection rate for transposition of the great arteries and coarctation of the aorta was 9 and 18% respectively.Conclusions56% of all fetuses with a critical congenital heart defect were diagnosed prenatally during 2014-2016 and approximately 53% of all major congenital heart defects 2013-2017 as compared to 13.8% in 2009 in the same region. An increased focus towards the fetal heart in the routine scan improved the prenatal detection rate of major congenital heart defects. The detection of congenital heart defects affecting the four-chamber view seems sufficient, but more training is needed to improve the quality of the examination of the outflow tracts.
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