In 1685, English physician Thomas Sydenham was the first to describe the clinical manifestations of rheumatic fever, naming the chorea "St Vitus’ Dance”, although it now bears his name.
As a medical student in the Northern Territory, I saw patients with acute rheumatic fever (ARF) and rheumatic heart disease (RHD) often. To see young Australians in their teens or twenties needing or having had heart valve surgery because of a disease of poverty and poor living conditions was sad and very confronting.
Most GPs learn about the modified Jones criteria in medical school and then are unlikely to think much about them again. This was the case for me when I came to Northern NSW in 2003. But living conditions for many, if not most, Aboriginal people living in the region put them at “high risk” for ARF and the rates of ARF in Aboriginal people here are the highest rates in NSW.
While I was aware that in our Aboriginal Medical Service (AMS) we had some people with ARF and RHD, I noticed a troubling increase in cases. We had gone from about one case every year since 2010, to four cases of ARF and three cases of RHD in 2021. I was also concerned about the standard of care these people were receiving.
Mr Scott Monaghan, the CEO of BNMAC, listened to my concerns and enlisted the help of Dr Steven Skov, a GP and Public Health Physician. With the cooperation of all three AMSes in the region we conducted a forensic audit of medical records in late 2022 to see how much ARF and RHD was really out there and how people were being managed.
We found both ARF and RHD to be much more common than previously thought. We found another five cases of ARF that had not been notified to NSW Health, meaning the rates of ARF were even higher than already thought.
There were at least 31 people (and likely more) who appeared to have RHD, which gave an all-ages prevalence of 1.94 / 1,000 population. The Australian RHD guidelines consider an area to be “endemic” if the all-ages prevalence of RHD is >= 2/1,000. Since then we have had six more cases of ARF who are at risk of developing RHD if they have a recurrence of ARF.
Another notable finding was that while the peak age for ARF is said to be in 5-14 year olds, over half the ARF cases were in people over the age of 14 and several over 30 years of age.
It has been heartening to see what we can do together to solve problems and enhance good care for our patients.
The key elements of dealing with this condition are being aware of and getting the diagnosis of ARF right; primary prevention with antibiotic treatment of sore throats and impetigo to prevent an episode of ARF; secondary prevention to prevent recurrences in those who have had ARF, preferably with four weekly benzathine penicillin injections; and close cardiac follow up of people with RHD. The national RHD guidelines are a comprehensive guide to understand all aspects of ARF and RHD.
Our audit found there was room for considerable improvement in clinician awareness and management of ARF/RHD, both in our AMSes and in the hospital system, with communication between the two sectors being a particular problem.
Making the diagnosis of ARF is complex and seldom possible in one consultation. The disease can evolve over days to a couple of weeks. Getting blood tests, ECGs and an echocardiogram, ideally within 72 hours, and closely following the patient is essential. This requires close communication between the GP and the hospital to ensure everything is done and not to lose the patient to follow up.
Missing the diagnosis means initially under-treating the patient, and, if they are not put on secondary prophylaxis, increasing their risk of a recurrence and a scarred heart valve.
Within the AMSes we set about educating our GPs and putting in place new systems. We increased the focus on ARF/RHD in our orientation and training programs and clinical protocols.
We are increasing the number of throat swabs we do and lowering the threshold for antibiotic treatment of sore throats as is recommended for “high risk” or “endemic” populations in the national guidelines. We recommend that all our GPs have the RHD app on their phone. This has the full range of necessary information, as well as a step by step diagnosis calculator to assist in assessment.
We approached senior clinicians in Lismore Base Hospital with our findings and formed a working group of GPs and specialists. We were able to develop an agreed standard of care for ARF, with a clear pathway from primary care through ED presentation to admission with paediatrics or cardiology if needed and back to primary care.
We are hoping to establish a similar working party looking at other complex problems later this year. It has been heartening to see what we can do together to solve problems and enhance good care for our patients. The Northern NSW Local Health District has taken on the responsibility of enhancing education and awareness of ARF/RHD for its clinicians across the region.
There is a vaccine for Group A Streptococcal disease in development but it is still some years away. I hope it is the light at the end of the tunnel of this awful preventable disease.
As doctors, we may not be able to have a direct impact on living conditions and poverty, but we can at least get the diagnosis right and do primary and secondary prevention properly.
So please, think ‘could this be a GAS infection?’ with high risk patients with a sore throat or impetigo and treat according to the guidelines. And while fever and joint pains are a very common presentation, at least think of the possibility of ARF in people at risk. And please download and use the ARF-RHD 2023 guidelines and the app – see QR codes!
Three hundred and thirty eight years after Sydenham first described ARF, it is inexplicable to me that in our privileged first world life here on the North Coast we are still dealing with a devastating disease that comes from poverty, poor living conditions and lack of access to appropriate medical care and which appears to have got worse since I arrived. What is wrong when the most expensive beach side real estate in Australia exists side by side with the highest rates of ARF and RHD in NSW.
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