Notice anything new? As a follower of Murmur and a visitor to the RHDAustralia website you’ll notice a few changes over the next couple of months. In addition to the new look Murmur, coming soon is our redeveloped website with a new design and improved navigation to make it easier for you to find what you want and explore some new content. Technical updates will make the site mobile responsive.
With each edition of Murmur, we highlight the breadth of work happening nationally and globally in the rheumatic heart disease space. The work in Australia is increasingly linking with emerging global efforts to address rheumatic heart disease and rheumatic fever. In parallel to the UN Sustainable Development Goals meetings in New York, the RHD Action Alliance was launched on September 29th. The alliance will focus international efforts on the reduction of rheumatic heart disease globally and I commend Rosemary Wyber and colleagues at RhEACH for their efforts on this important initiative, with the World Heart Federation and Medtronic being the other founding partners in the RHD Action Alliance.
Meanwhile back in Australia, amazing people like Kitty Fredericks are doing equally important work championing the RHD cause and doctors and nurses are embracing new technology to improve acute rheumatic fever diagnosis. For those clinicians out there I recommend you download the latest version of the RHDAustralia app and try out the Diagnosis Calculator for when you next have a patient with possible ARF. Christian James, Manager Education and Training at RHDAustralia, has done a terrific job developing this diagnostic support tool, adapting it from the initial algorithm developed by Marc Remond, Graeme Maguire and colleagues. Many iterations have led to the current version. Please provide any feedback or suggestions for further improvement to email@example.com
Supporting these patients and practice are the researchers providing evidence and impetus for change. We have also introduced a clinical update, promoting an aspect of best practice in preventing, managing and treating rheumatic fever and rheumatic heart disease. A recurrent issue that is often raised is continuity of care within the various service delivery models across the jurisdictions with RHD control programs. The turnover of staff and pressure of acute care work in remote communities are often major concerns when assessing delivery of ARF/RHD programs. Availability of RHDAustralia education and support packages for patients, families and health staff help provide knowledge, but it is operational issues that also need addressing and these will be the focus of important work over the next year.
If you have a story to share or would like to provide feedback on Murmur, please contact the RHDAustralia team by email at firstname.lastname@example.org or by phone 08 8946 8954.
Professor Bart Currie
Meet Kitty: the 12-year-old girl combating RHD in Western Australia
The bravery and resilience of people with rheumatic heart disease (RHD) should never be underestimated. Kitty is a 12-year-old girl with RHD, but she is also known as an RHD champion.
From Kalumburu in Western Australia, Kitty was diagnosed with RHD in January 2015. With no history of acute rheumatic fever (ARF) Kitty was sent 3,000 kilometres from home to Perth’s Princess Margaret Hospital with heart failure and had to undergo surgery. Read more
Intern doctor uses RHD app to confirm a diagnosis
“One of my first cases of acute rheumatic fever was a 14 year old girl - she was transferred from her community with chorea. The diagnosis was not initially clear to my team, as we had limited experience in diagnosing the illness. Someone suggested acute rheumatic fever, and had the RHDAustralia app, so we had a look. It showed definite acute rheumatic fever.” - Dr Jessica Sommer.
A new global initiative to end rheumatic heart disease (RHD); RHD Action, was launched in New York on September 29th 2015, World Heart Day. This alliance between global health experts, health care providers and people living with RHD highlights the importance of a collaborative input on a global scale to tackle this entirely preventable but neglected disease.
Rheumatic heart disease remains the most common cause of acquired heart disease in children. While around 79% of people with RHD live in developing countries, Indigenous and vulnerable communities in high resource settings also live with acute rheumatic fever (ARF) and rheumatic heart disease. ARF incidence and RHD prevalence in remote Aboriginal and Torres Strait Islander communities of Northern and Central Australia are some of the highest in the world. The global significance and impact of rheumatic heart disease is what drove the creation of RHD Action. Read more
Research finds NT has the highest rates of RHD in Australia
The prevalence of rheumatic heart disease (RHD) in Indigenous children living in the Top End is two to three times higher than that of children living in three other remote regions, and this may be related to poorer socioeconomic conditions, according research led by Dr Kathryn Roberts, a paediatrician at the Menzies School of Health Research. Read more.
Clinical Update: Supporting ARF Diagnosis
Anyone suspected to have ARF (first episode or recurrence) should be hospitalised as soon as possible so that a diagnosis can be confirmed and any necessary treatment commenced. Accurate diagnosis is important because overdiagnosis will result in individuals receiving unnecessary injections, and underdiagnosis may lead to individuals suffering recurrent ARF and developing rheumatic heart disease. Read more
Acute Rheumatic Fever and Rheumatic Heart Disease now notifiable in NSW
From October 2 2015, New South Wales Health has made both acute rheumatic fever and rheumatic heart disease notifiable under the Public Health Act, and established a voluntary register for people with rheumatic fever and/or RHD to improve the long term clinical care of these patients. Notification of rheumatic fever and/or of people aged less than 35 years diagnosed with RHD is the first step in accessing the NSW RHD Register.
“Under the Better Cardiac Care for Aboriginal People initiative, NSW committed to making rheumatic fever and rheumatic heart disease notifiable so these conditions can be better monitored and managed. We look forward to working with Aboriginal Community Controlled Health Services and Aboriginal communities to reduce the burden of these preventable conditions” said Dr Vicky Sheppeard of NSW Health.
NSW clinicians can contact their local public health unit by calling 1300 066 055 to notify patients with suspected new and recurrent episodes of rheumatic fever and all patients with RHD aged under 35 years. See more information on the Control Guidelines here.
Audit improving data quality in Queensland
The Queensland RHD Control Program has commenced work on dedicated patient register which will ‘go live’ in early 2016. The new register is part of a broader quality improvement strategy which has also included a state wide audit of medical records.
“To ensure patient information is comprehensive and so that clients are not lost to follow up we are auditing medical records in all facilities where clients have received care” says Mellise Anderson, Project Manager “We know rheumatic fever and rheumatic heart disease are under-reported so an additional process of using discharge coding reports to identify possible cases has been added to the chart audit work.”
The team have audited 2,139 records and 145 possible ARF/RHD clients have been identified through this active case finding work.
Judy Katzenellenbogen oversees a broad range of research and translational activities in group A streptococcal diseases with a particular focus on acute rheumatic fever and rheumatic heart disease. Judy completed her PhD at UWA in 2009 on the burden of stroke utilising the WA Data Linkage System. She worked at Curtin University and the WA Centre for Rural Health (UWA) in the area of chronic disease in Aboriginal Australians, particularly in applying linked data methods to the study of heart disease, building capacity in Aboriginal health and using the research to advocate for changes to improve Aboriginal health outcomes.
Katherine Gray is Program Manager for Group A Streptococcal diseases research team. After completing her PhD in pharmacology at Monash University, Melbourne in 2007, Katherine worked for the Commonwealth Department of Health, most recently, at the Therapeutic Goods Administration as a Director in the Postmarket Surveillance Branch.
Healthy Living, Healthy Heart: Foundation launches ‘Live Lighter’ in the Territory
Heart Foundation NT launched the ‘Live Lighter’ campaign in Darwin and Alice Springs on World Heart Day in September and National Nutrition Week in October. The Live Lighter campaign graphically portrays the damage unhealthy weight, poor diet and physical inactivity can cause to internal organs. The hard-hitting ‘toxic fat’ adverts take people inside their own bodies, showing how visceral or “toxic” fat around your vital organs, can dramatically increase the risk of developing serious health conditions such as cardiovascular disease, diabetes and some cancers.
Heart Foundation NT CEO, Simon Dixon, acknowledged the campaign is confronting but said so was the fact the Australian Health Survey in 2011-2012 found that a higher proportion of persons in the Northern Territory are consuming soft drinks compared to the national average.
“Being overweight or obese increases a person’s risk of heart disease, type 2 diabetes and some cancers. We all need to have an honest look at ourselves and see what areas of our lives would benefit from a few healthier changes. Even small changes can make a big difference to our long term health” said Mr. Dixon.
The campaign has been designed to inform, encourage, change and trigger fresh debate about obesity, chronic disease prevention and healthy lifestyle related issues. For people at risk of rheumatic fever and rheumatic heart disease it is important not to add further stress to the heart by being overweight.
To find out more information about how you can benefit from the Live Lighter campaign, visit: www.livelighter.com.au