scholarly journals 1219Translating epidemiological findings to end rheumatic heart disease in Australia: the ERASE project

2021 ◽  
Vol 50 (Supplement_1) ◽  
Author(s):  
Assoc Judith Katzenellenbogen ◽  
Ingrid Stacey ◽  
Vicki Wade ◽  
Emma Haynes ◽  
Dawn Bessarab
Keyword(s):  
Heart Disease ◽  
Health Literacy ◽  
Rheumatic Heart Disease ◽  
Linked Data ◽  
Indigenous Australians ◽  
Methods Development ◽  
Culturally Informed ◽  
The Impact ◽  
Training Practice ◽  
Rheumatic Heart

Abstract Focus of Presentation Rheumatic fever (RF) and rheumatic heart disease (RHD) are endemic among Indigenous Australians. End RHD in Australia: Study of Epidemiology (ERASE) aimed to characterize contemporary RF/RHD epidemiology. Using multi-jurisdictional linked data from several administrative sources, we undertook sub-studies covering diverse epidemiological questions, requiring substantial methods development. Mixed methods further identified barriers/facilitators to inform system redesign. Our multi-disciplinary collaboration supported diverse initiatives to contribute to policy at government, service and community/stakeholder levels. We show how findings from ERASE were applied/translated to address the impact of RF/RHD in Australia. Findings Academic: >15 papers and commentaries/editorials provided the backbone to translational outputs and methods sharing. PhD students have ongoing projects using ERASE datasets. Advocacy: ERASE epidemiological and economic information supported the Endgame Strategy (roadmap for eliminating RHD in Australia by 2031) presented to government. Health professionals: ERASE data contributed to Australian RF/RHD guidelines. Slides of results/interpretation are publically-available on the RHDAustralia website. Student lectures integrate biomedical and culturally-informed perspectives. Indigenous stakeholder engagement: involves (1)presentations to peak Indigenous-controlled organisations (2)co-designed resources (booklets/slides) for capacity-building of RHDAustralia’s national Champions4Change network (3)research workshops to promote two-way learning and health literacy/numeracy. Challenges remain regarding strengths-based approaches when reporting high disparities. Conclusions/Implications Strong translational commitment and national multi-disciplinary networks of Indigenous and non-Indigenous collaborators ensured ERASE generated multiple outputs that continue to inform training, practice, policy and community health literacy. Key messages Build translation and broad collaboration into study from the start.

scholarly journals Contemporary Incidence and Prevalence of Rheumatic Fever and Rheumatic Heart Disease in Australia Using Linked Data: The Case for Policy Change

2020 ◽  
Vol 9 (19) ◽  
Author(s):  
Judith M. Katzenellenbogen ◽  
Daniela Bond‐Smith ◽  
Rebecca J. Seth ◽  
Karen Dempsey ◽  
Jeffrey Cannon ◽  
...  
Keyword(s):  
Heart Disease ◽  
Rheumatic Fever ◽  
Rheumatic Heart Disease ◽  
Linked Data ◽  
Direct Methods ◽  
Indigenous Populations ◽  
World Health ◽  
Indigenous Australians ◽  
High Resource ◽  
Rheumatic Heart

Background In 2018, the World Health Organization prioritized control of acute rheumatic fever (ARF) and rheumatic heart disease (RHD), including disease surveillance. We developed strategies for estimating contemporary ARF/RHD incidence and prevalence in Australia (2015–2017) by age group, sex, and region for Indigenous and non‐Indigenous Australians based on innovative, direct methods. Methods and Results This population‐based study used linked administrative data from 5 Australian jurisdictions. A cohort of ARF (age <45 years) and RHD cases (<55 years) were sourced from jurisdictional ARF/RHD registers, surgical registries, and inpatient data. We developed robust methods for epidemiologic case ascertainment for ARF/RHD. We calculated age‐specific and age‐standardized incidence and prevalence. Age‐standardized rate and prevalence ratios compared disease burden between demographic subgroups. Of 1425 ARF episodes, 72.1% were first‐ever, 88.8% in Indigenous people and 78.6% were aged <25 years. The age‐standardized ARF first‐ever rates were 71.9 and 0.60/100 000 for Indigenous and non‐Indigenous populations, respectively (age‐standardized rate ratio=124.1; 95% CI, 105.2–146.3). The 2017 Global Burden of Disease RHD prevalent counts for Australia (<55 years) underestimate the burden (1518 versus 6156 Australia‐wide extrapolated from our study). The Indigenous age‐standardized RHD prevalence (666.3/100 000) was 61.4 times higher (95% CI, 59.3–63.5) than non‐Indigenous (10.9/100 000). Female RHD prevalence was double that in males. Regions in northern Australia had the highest rates. Conclusions This study provides the most accurate estimates to date of Australian ARF and RHD rates. The high Indigenous burden necessitates urgent government action. Findings suggest RHD may be underestimated in many high‐resource settings. The linked data methods outlined here have potential for global applicability.

The Impact of Echocardiographic Screening for Rheumatic Heart Disease on Patient Quality of Life

2016 ◽  
Vol 175 ◽  
pp. 123-129 ◽  
Author(s):  
Tyler Bradley-Hewitt ◽  
Andrea Dantin ◽  
Michelle Ploutz ◽  
Twalib Aliku ◽  
Peter Lwabi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Heart Disease ◽  
Rheumatic Heart Disease ◽  
The Impact ◽  
Rheumatic Heart

scholarly journals Disparity in Mortality From Rheumatic Heart Disease in Indigenous Australians

2015 ◽  
Vol 4 (7) ◽  
Author(s):  
Samantha M. Colquhoun ◽  
John R. Condon ◽  
Andrew C. Steer ◽  
Shu Q. Li ◽  
Steven Guthridge ◽  
...  
Keyword(s):  
Heart Disease ◽  
Rheumatic Heart Disease ◽  
Indigenous Australians ◽  
Rheumatic Heart

PT296 Screening for Rheumatic Heart Disease and the Impact of Borderline RHD

Global Heart ◽  
2016 ◽  
Vol 11 (2) ◽  
pp. e176
Author(s):  
G.P. Maguire ◽  
D. Atkinson ◽  
A. White ◽  
J. Carapetis ◽  
M. Remond
Keyword(s):  
Heart Disease ◽  
Rheumatic Heart Disease ◽  
The Impact ◽  
Rheumatic Heart

Outcomes of Primary Valvular Surgery in Indigenous Australians With Rheumatic Heart Disease

2019 ◽  
Vol 28 ◽  
pp. S88
Author(s):  
M. Yong ◽  
S. Page ◽  
R. Grant ◽  
P. Wiemers ◽  
P. Saxena ◽  
...  
Keyword(s):  
Heart Disease ◽  
Rheumatic Heart Disease ◽  
Indigenous Australians ◽  
Valvular Surgery ◽  
Rheumatic Heart

The impact of a peer support group for children with rheumatic heart disease in Uganda

2018 ◽  
Vol 101 (1) ◽  
pp. 119-123 ◽  
Author(s):  
Amy Scheel ◽  
Andrea Beaton ◽  
Emmy Okello ◽  
Chris T. Longenecker ◽  
Isaac Omara Otim ◽  
...  
Keyword(s):  
Heart Disease ◽  
Rheumatic Heart Disease ◽  
Peer Support ◽  
Support Group ◽  
Peer Support Group ◽  
The Impact ◽  
Rheumatic Heart

scholarly journals A community-based program to reduce acute rheumatic fever and rheumatic heart disease in northern Australia

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Vicki Kerrigan ◽  
Angela Kelly ◽  
Anne Marie Lee ◽  
Valerina Mungatopi ◽  
Alice G. Mitchell ◽  
...  
Keyword(s):  
Heart Disease ◽  
Health Literacy ◽  
Primary Prevention ◽  
Rheumatic Fever ◽  
Rheumatic Heart Disease ◽  
Acute Rheumatic Fever ◽  
Aboriginal Peoples ◽  
Northern Australia ◽  
Aboriginal Community ◽  
Rheumatic Heart

Abstract Background In Australia’s north, Aboriginal peoples live with world-high rates of rheumatic heart disease (RHD) and its precursor, acute rheumatic fever (ARF); driven by social and environmental determinants of health. We undertook a program of work to strengthen RHD primordial and primary prevention using a model addressing six domains: housing and environmental support, community awareness and empowerment, health literacy, health and education service integration, health navigation and health provider education. Our aim is to determine how the model was experienced by study participants. Methods This is a two-year, outreach-to-household, pragmatic intervention implemented by Aboriginal Community Workers in three remote communities. The qualitative component was shaped by Participatory Action Research. Yarning sessions and semi-structured interviews were conducted with 14 individuals affected by, or working with, ARF/RHD. 31 project field reports were collated. We conducted a hybrid inductive-deductive thematic analysis guided by critical theory. Results Aboriginal Community Workers were best placed to support two of the six domains: housing and environmental health support and health navigation. This was due to trusting relationships between ACWs and families and the authority attributed to ACWs through the project. ACWs improved health literacy and supported awareness and empowerment; but this was limited by disease complexities. Consequently, ACWs requested more training to address knowledge gaps and improve knowledge transfer to families. ACWs did not have skills to provide health professionals with education or ensure health and education services participated in ARF/RHD. Where knowledge gain among participant family members was apparent, motivation or structural capability to implement behaviour change was lacking in some domains, even though the model was intended to support structural changes through care navigation and housing fixes. Conclusions This is the first multi-site effort in northern Australia to strengthen primordial and primary prevention of RHD. Community-led programs are central to the overarching strategy to eliminate RHD. Future implementation should support culturally safe relationships which build the social capital required to address social determinants of health and enable holistic ways to support sustainable individual and community-level actions. Government and services must collaborate with communities to address systemic, structural issues limiting the capacity of Aboriginal peoples to eliminate RHD.

scholarly journals Health related quality of life among Rheumatic Fever and Rheumatic Heart Disease patients in India

PLoS ONE ◽  
2021 ◽  
Vol 16 (10) ◽  
pp. e0259340
Author(s):  
Jyoti Dixit ◽  
Gaurav Jyani ◽  
Shankar Prinja ◽  
Yashpaul Sharma
Keyword(s):  
Quality Of Life ◽  
Heart Disease ◽  
Rheumatic Fever ◽  
Rheumatic Heart Disease ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Rheumatic Heart

Background Measurement of health-related quality of life (HRQOL) of people with chronic illnesses has become extremely important as the mortality rates associated with such illnesses have decreased and survival rates have increased. Thereby, such measurements not only provide insights into physical, mental and social dimensions of patient’s health, but also allow monitoring of the results of interventions, complementing the traditional methods based on morbidity and mortality. Objective The present study was conducted to describe the HRQOL of patients suffering from Rheumatic Fever (RF) and Rheumatic Heart Disease (RHD), and to identify socio-demographic and clinical factors as predictors of HRQOL. Methodology A cross-sectional study was conducted to assess the HRQOL among 702 RF and RHD patients using EuroQol 5-dimensions 5-levels instrument (EQ-5D-5L), EuroQol Visual Analogue Scale and Time Trade off method. Mean EQ-5D-5L quality of life scores were calculated using EQ5D index value calculator across different stages of RF and RHD. Proportions of patients reporting problems in different attributes of EQ-5D-5L were calculated. The impact of socio-economic determinants on HRQOL was assessed. Results The mean EQ-5D-5L utility scores among RF, RHD and RHD with Congestive heart failure patients (CHF) were estimated as 0.952 [95% Confidence Interval (CI): 0.929–0.975], 0.820 [95% CI: 0.799–0.842] and 0.800 [95% CI: 0.772–0.829] respectively. The most frequently reported problem among RF/RHD patients was pain/discomfort (33.8%) followed by difficulty in performing usual activities (23.9%) patients, mobility (22.7%) and anxiety/depression (22%). Patients with an annual income of less than 50,000 Indian National Rupees (INR) reported the highest EQ-5D-5L score of 0.872, followed by those in the income group of more than INR 200,000 (0.835), INR 50,000–100,000 (0.832) and INR 100,000–200,000 (0.828). Better HRQOL was reported by RHD patients (including RHD with CHF) who underwent balloon valvotomy (0.806) as compared to valve replacement surgery (0.645). Conclusion RF and RHD significantly impact the HRQOL of patients. Interventions aiming to improve HRQOL of RF/RHD patients should focus upon ameliorating pain and implementation of secondary prevention strategies for reducing the progression from ARF to RHD and prevention of RHD-related complications.

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