Education and training

Video transcript

2026.02.17 QH RHD Program and RHD Register

0:43
Good afternoon all.

0:44
Thank you so much for coming along and joining us to talk more about the Queensland Health Rheumatic Heart Disease Programme and the Queensland RHD Register and data.

0:56
Our presentation today is being recorded, which we have started.

1:01
We do kindly request that you keep yourselves on mute just for the presentation and raise ask any questions that you may like at the end of the presentation and we'll address them.

1:11
We also have the chat is being monitored so if you have any questions throughout the presentation, please feel free to pop them into the chat and we'll answer them as we go along.

1:21
My name is Elizabeth and I am one of the clinical Nurse Consultants working for the Queensland Health RHD programme and monitoring the chat.

1:28
We have AM and Canna Cam and Anna made myself tongue tied monitoring the chat as the other CNCS for the Queensland Health RHD programme.

1:41
All right, so we'll kick off because I am very mindful of everyone's precious time today.

1:47
If you can't see the screen at any point in time, please do let me know.

1:52
So we'd like to start off by acknowledging the traditional land owners.

1:56
So the Queensland Government respectfully acknowledges Aboriginal and Torres Strait Islander peoples as the traditional and cultural custodians on the lands on which we live and work to deliver healthcare to all Queenslanders and recognise the continuation of First Nations peoples, cultures and connection to the lands, waters and communities across QLD.

2:17
So the Queensland Health Rheumatic Heart Disease programme encompasses both the First Nations RHD Action Plan 2025 to 2027 as well as the Queensland RHD Register.

2:28
We are positioned within the Department of Health with the objective of providing a whole of system response for the prevention, identification, treatment and management of both ARF and RHD across QLD.

2:43
This slide is an example of the ways in which the RHD programme supports ARF and RHD management and disease prevention of disease progression.

2:52
So we provide support through the First Nations RHD Action Plan.

2:56
We partner with the Commonwealth Department of Health and Nacho.

3:00
We maintain a disease specific database for to provide record epidemiological data as well as support recalls and ongoing management.

3:12
We provide education through culturally responsive resources and we provide education to healthcare providers to increase awareness of both ARF and RHD as well as disease ways to prevent disease progression.

3:31
So the First Nations RHD Action Plan was developed in consultation with key stakeholders including First Nations peoples and organisations.

3:41
The Action Plan builds upon the foundations of the Ending RHD Queensland's First Nation Strategy 2021 to 2024 and is aligned to First Nations First Strategy 2032.

3:54
The First Nations Action Plan continues to be informed by the RHD End Game Strategy, which is Australia's strategy for eliminating RHD by 2031.

4:05
The action plan sets a clear goal to reduce the incidence and recurrence of ARF and the incidence of RHD and will guide Queensland's efforts over the next three years.

4:21
So I'm going to move in now to talk about the Queensland RHD data.

4:26
So I will just put forward that the data that we are sharing is from the Queensland RHD Register.

4:31
The data was pulled and it was accurate as of the 9th of February 2026.

4:36
The data that we are able to show from the Queensland RHD Register is only as accurate as the data that we received by the Queensland RHD Register.

4:45
So there may be some minor discrepancies in data based upon us not knowing about cases or about disease progression.

4:56
So within Australia, ARF and RHD disproportionately effects First Nations people, particularly children and females.

5:05
According to the Australian Institute of Health and Welfare, First Nations peoples of Australia are 6 to 8 times more likely to be hospitalised with ARF or RHD as their principal diagnosis.

5:19
They are over 80%.

5:20
They make up over 80% of new ARF and RHD cases and they are unfortunately 20 times more likely to pass away from ARF or RHD.

5:32
The groups at high risk of ARF or RHD within Queensland include First Nations peoples living in rural or remote settings, First Nations and Maori or Pacific Islander peoples living in households affected by crowding, as well as migrants and refugees from low and middle income countries.

5:52
The map of Queensland over to the right is a heat map indicating the percentage of patients known to the Queensland RHD Register based upon the HHS of residents or the HHS of their primary provider.

6:06
As you can see, the majority of patients are residing in North Queensland with the red indicating the highest burden of disease, followed by the amber and then the Goldie colours.

6:16
That does continue to be episode burden of disease all down the East Coast with another blip down in the southeast quarter.

6:24
This data down the southeast quarter is representative of your larger cohorts of your Maori and Pacific Island people as well as your larger cohorts of migrants and refugees as well as those that have migrated to Australia with pride.

6:37
History of ARF or RHD and the North cases show a greater percentage of your First Nations populations on the register.

6:48
We currently know about 3874 patients that are currently receiving care for ARF or RHD.

6:56
So an active patient by the Queensland RHD Register standard is someone who is currently residing in Queensland, has a primary healthcare provider listed in Queensland, and they are receiving ongoing care or management for the ARF RHD, which may include secondary prophylaxis or surveillance echocardiograms.

7:15
It does not include those that have relocated outside of Queensland, those that have had their ARF or RHD ruled out, those that have ceased treatment for ARF or RHD, and those that have unfortunately passed away for ARF RHD.

7:34
These maps here are heat maps indicating the prevalence of ARF or RHD between the years of 2020 to 2025 show it's sowing the incident rates of ARF or RHD per 100,000 population.

7:48
The map on the left is indicative of your ARF incidents for all of Queensland, and the map on the right is indicative of your RHD across all of Queensland.

7:58
These maps continue to show that the highest burden of disease is within north and northwest Queensland for both ARF and RHD, which is similar to the information that was shown previously on the graph about the known to the register.

8:16
This graph is representative of the incidence of ARF cases within Queensland over the past 10 years, separated by both gender and age.

8:24
So we did mention earlier that ARF and RHD disproportionately affect females and children.

8:30
We can see that the highest burden of ARF is occurring in young adult, young adolescents and adult young adulthood in ages 0 to 14.

8:38
There is a higher burden of reported ARF over the past 10 years and that does flip then to females from the ages of 15 and upwards.

8:50
This data is inclusive of all ARF classifications including possible, probable, and confirmed.

9:00
This graph is showing the burden of RHD based upon age and gender, again for all of QLD.

9:06
So this continues to show that females are overrepresented in data for both ARF and RHD with a higher burden of disease occurring amongst females.

9:15
68% of cases known to the register are in females at this moment.

9:21
This data is representative of all severities and staging for RHD classification.

9:28
Earlier we mentioned that there are currently 3874 clients known to the register.

9:34
66% of clients do have established rheumatic heart disease.

9:39
Unfortunately, 46% of clients known to the register who have rheumatic heart disease have no prior recorded history of ARF.

9:49
RHD cannot occur in isolation.

9:52
RHD is a secondary complication from ARF due to cardiac damage.

9:57
So it means that these individuals at some point in their life have had the episode of ARF either missed, not recognised or not treated or they may not have presented for care which has LED them to have their first presentation to be with RHD.

10:13
24% of the clients known to the Queensland Register with RHD have had to have some degree of surgical intervention to their valve due to cardiac damage.

10:25
Fortunately there is some good news that 30% of clients known to the Queensland RHD Register have no reported history of RHD at this point in time.

10:39
This graph is a representation of the severity of RHD in Queensland but separated between First Nations and non First Nations peoples.

10:49
The classification of RHD in Australia changed from severity to staging in June 2025 following the release of the updated Australian ARF and RHD guidelines which incorporated changes from the World Heart Federation.

11:02
So whilst this data does look a little bit messy, it is showing those that are on the register who still have their RHD recorded under the old severity classifications of Borderline through to Severe, as well as those that have had their RHD classification changed over to the new staging of Stage A to Stage D.

11:20
Work is still ongoing with the RHD register to convert those with the old severity staging over to the new RHD staging criteria.

11:31
The undetermined category is representative of those that have not had their first echocardiogram following an ARF diagnosis.

11:38
So we're unable to assess, they've been unable to assess what degree of cardiac damage is in place.

11:43
It is also representative of those that there is insufficient information to accurately call an RHD classification.

11:52
You will see on this graph here as well that the percentage of First Nations with most classifications of RHD is higher.

12:01
However it does flip in the severe classification with first non First Nations Australians representing a higher percentage.

12:08
We don't have an exact answer as to what this due to this information.

12:12
It may be due to life expectancy differences.

12:14
It may also be due to attendance with CARES.

12:17
It may be due to patients arriving to Australia with a previous history of RHD with severe damage or previous cardiac interventions and when they first present for the treatment in Queensland it's when they are first diagnosed with severe RHD.

12:38
This is just some data on the secondary prophylaxis rates within Queensland over the past 12 months.

12:44
So since February 2025, we knew about 1818 clients who are recommended to be receiving secondary prophylaxis to prevent ARF recurrence as well as RHD progression.

12:58
In the past 12 months, 442 of these patients have received 80% or more of their doses and unfortunately 314 patients have not received a single dose of BPG within the past 12 months.

13:12
So this data is reflective only of the BPG in terms of the doses administered.

13:16
And this is due to the Queensland RHD Register not having the ability to record adherence with oral prophylaxis because secondary prophylaxis is recommended to be administered for BPG every 21 to 28 days.

13:29
Oral prophylaxis is recommended to be taken twice daily every day.

13:34
And unfortunately, the Queensland Register has no way of recording when a patient is taking their oral prophylaxis that relies upon a trust and rapport between the client and their healthcare provider to monitor oral medications.

13:48
Consistent BPG administration continues to be the most effective evidence based measure in preventing further ARF episodes and it is recommended that patients receive at least 80% of their scheduled doses to achieve the best prevention against ARF recurrence and RHD progression.

14:06
On the register, there is 116 patients that we know about who are recommended to be receiving oral prophylaxis for their secondary prophylaxis.

14:14
And this may be due to patients having a severe penicillin allergy, patients having a bleeding disorder that prevents them from receiving intramuscular injections, persistent refusal of intramuscular injections due to previous trauma.

14:28
It may also include patients that have had difficulty sourcing the injections due to the medication shortage and they have temporarily been converted to an oral prophylactic option.

14:41
So we're now going to move over to talking about the Queensland RHD Register.

14:51
So the Queensland RHD Register is a secure statewide disease specific database that performs an important function as a centralised repository of patient information to support healthcare providers across the state.

15:04
So what that means is that we work collectively with healthcare providers, both public and private, all across the state to help to support coordination of care delivery and service delivery.

15:16
The information collected in the register includes details about a patient's ARF and RHD history, their number of their notifications, this classification of their notification.

15:28
We also monitor their disease progression.

15:30
So from diagnosis to now, how is their RHD progressed, if any, or how many cases of ARF recurrence has there been?

15:37
We record details about their nominated healthcare providers, whether that be 11 provider or up to five providers to help to support the coordination of cares.

15:47
Also includes relocation so between healthcare providers within Queensland, between HHSS or between states.

15:56
We retract outcomes related to specialist reviews and echocardiograms and update recalls based upon specialist recommendations and Australian guideline recommendations.

16:08
We record information related to surgery if a patient is being recommended for surgery due to for RHD complications or if they've had surgery completed due to RHD.

16:19
We also include information about secondary prophylaxis recommendations such as what type of medication they recommended to be on, their frequency of medication administration, when they're recommended to cease, and when they're changing between an IM option versus an oral option.

16:35
We also the RHD clinical team review the clinical correspondence that is received at the register to update patient care plans which includes their RHD staging, their priority classification according to the Australian ARF and RHD guidelines as well as management recommendations based upon specialist advice as well as the Australian guidelines.

16:58
The register is able to provide clinical summaries of this information to healthcare providers on request which include you can have a single one page summary which has the patient's details, nominated healthcare providers, ARFRHD history and 1st RHD and last RHD severity as well as next due dates.

17:18
We will just note that there is unfortunately no communication from the Queensland Register to other health record keeping systems, which means all data that is entered into the register is a manual process which can result in some delays to data entry based upon the influx of information that comes in at any point in time.

17:41
So how are patients added to the Queensland RHD Register?

17:45
So patients are automatically added to the Queensland RHD register after a notification for ARF or RHD has been submitted through to the online notifiable condition system and that notification has been reviewed by the local public health unit.

18:00
Both ARF and RHD are notifiable conditions and they do require notification on disease specific notification forms.

18:09
Once the case has been notification has been completed and reviewed by the local public health unit, if verified to meet case criteria, the case will be closed on the online notification system which will trigger for the notification to be added to the Queensland Register.

18:24
From there, the Queensland Register will update patient details based upon the notification as well as nominated healthcare providers and start follow up and communication for ongoing support and management.

18:36
Unfortunately, this cannot occur until a notification is completed, so it is essential that all suspected cases of ARF are notified and RHD is notified on diagnosis.

18:48
Notifications can be sent through to CDIS Knox that email addressed on the screen and that is for a statewide service.

18:56
If you're ever unsure if a case meets ARF criteria or if a notification is required, you can always reach out to your local public health unit for support.

19:06
There is a role of healthcare providers to provide education to patients when they are suspected of having ARF or RHD for their diagnosis and advising that their details will be added to the Queensland RHD Register.

19:19
If you're unsure if a patient is known to the Queensland RHD Register, you can ask us at any point in time.

19:25
If a patient is known, we will let you know and we'll provide you with details about their latest disease progression and recommended follow up if due.

19:32
We'll if they are not known to the register, we'll help you with support and investigation as to what the next steps to take are.

19:39
For example, we will check the notification system to see if a notification has been submitted and if it's sitting with the local public health unit for investigation or if that has been received by public health but the case may have been ruled out.

19:52
If there is no notification sitting on the online notification system, then we will advise about the need for a notification to be completed to start the process.

20:05
Now whilst we say patients are automatically added to the register, there is patients do continue to have the choice as to how they would like their clinical and personal information to be used.

20:14
So we operate with an opt out model that means patients can choose to opt out and rejoin the Queensland RHD register at any time.

20:22
How it works is that a patient will contact their healthcare provider to discuss the register and they can have their healthcare providers complete the notification, the opt out request on their behalf.

20:33
Or the patient can contact the Queensland RHD register directly via phone or email and we can complete the opt out paperwork with them over the phone.

20:42
The opt out and rejoin paperwork is available on our web page.

20:46
What it means to opt out is that the register will no longer record any information about the patient's ARF or RHD history.

20:53
We will no longer record any information about their disease progression.

20:57
We will no longer provide any treatment reminders or recalls to nominated healthcare providers and we will no longer include their statistics in reports to the AHW to monitor the national burden of ARF or RHD.

21:10
This does not replace the need for patients to continue to receive care for their AR for RHD as per best practise recommendations and it does not replace the need to continue to notify recurrent episodes of ARF to your local public health unit.

21:28
So the communication that the Queensland RHD register does back to healthcare providers.

21:33
So we send recalls to healthcare providers to support due and overdue cares.

21:38
Monthly recalls are sent regarding secondary prophylaxis, the BPG of due date and last administered.

21:46
We also send quarterly recalls for echocardiograms with the same information of when the last echocardiogram was completed and when the next due date is.

21:54
These recalls can be sent more frequently if required by a healthcare provider.

21:58
You just need to let us know.

22:01
These recalls are also sent to multiple healthcare providers across Queensland to support care.

22:06
This is particularly important beneficial for patients who may be transient or who may live in one HHS, but they are temporarily seeking care in another HHS.

22:16
For example, those that may be attending boarding school who may have live in one area, but they are residing in another and they're prime.

22:22
So their care providers are different.

22:24
This just helps to continue to support care between patients movements so that they can they do not get lost to follow up.

22:35
Unfortunately, the register is unable to provide recalls for oral prophylaxis as mentioned earlier, due to being unable to record when oral prophylaxis was last administered or when they last received a prescription.

22:46
We also are unable to send recalls relating at this time due to for anticoagulation recommendations, recommendations for infective endocarditis prophylaxis, recommended recommendation for dental cheques or for routine vaccinations.

23:00
If you do have questions relating to this, feel free to reach out and if we are able to support, we will.

23:07
The communication that the register will do in addition to the automated recalls is direct follow up with providers dependent upon care requirements.

23:15
So we will communicate directly with healthcare providers when we receive notification, confirmation of a new ARFRHD notification to advise that this patient has been added to the register for an episode of disease.

23:27
We contact healthcare providers regarding secondary prophylaxis.

23:30
So if we, for example, we haven't seen reports of administration in an extended period of time, we may reach out to check to see if the patients are still attending that health service so that we can update our recalls and ensure coordination of care.

23:44
We also reach out if a patient is approaching a due to cease prophylaxis to try to prevent patients from receiving ongoing injections unnecessarily.

23:53
If a patient is due overdue for a specialist service or an echocardiogram.

23:56
We will also reach out with recommendations for referrals if we cannot locate 1 and if there is a new provider engaging with the register or if a patient is moving between providers and we'll maintain that engagement and communication to continue support and ongoing care.

24:11
We will just note that the Queensland register does not communicate directly with patients and this is because the register we are based separate and we are spread across the state in a number of different areas that it's unlikely that the patients were to contact us there to receive the same nurse to talk to at the same time.

24:27
So we continue to support healthcare providers as our first point of contact so that healthcare providers are able to maintain that engagement and develop rapport with their clients so that they can have that trust and they have their designated person of contact.

24:51
This is an example as to what the recalls for BPG looks like if you may not have seen them before.

24:56
So they come spread over across multiple pages with the first page being an example of that screen down the bottom.

25:01
Which includes information as to which service presider has received this recall information about what the QLD RHG register is and the point of this recall information about for BPG.

25:13
What is the purpose of BPG when it should be administered?

25:16
Links to resources to support pain management as well as considerations for ceasing BPG.

25:25
It also includes information about what is required to be sent back to the register, as well as how to communicate this information back.

25:33
The top image you'll see is what the 2nd and ongoing pages of the recalls look like.

25:38
It has again, our contact details on there, so you can easily contact us with information at any point in time.

25:45
It will include details of the patient's name, given name and date of birth.

25:49
You'll see their nominated primary and secondary providers so that these are all the providers that are receiving the recalls to help with care coordination and support.

25:58
It'll show the date of last administration as well as the next due, and if it's overdue, it'll be highlighted in red.

26:05
To communicate information about BPG administration back to the register, you can send it sending us information via phone, fax or email.

26:16
You can either do it however whatever suits you, whether it be wait to complete all the details on a recall and fax through the recall at once, or if you'd like to do calls or send an email after a single dose had been administered, we can update the register that way as well.

26:37
This is what the recalls for echocardiograms look like.

26:39
So they are based upon the same format that the front page identifies which service provider has received this recall, information about the register and how to communicate details back to us, what information is recommended to be communicated back to us.

26:53
So for echocardiograms, it is a little bit more than BPG because it's information about if a patient no longer needs echocardiogram follow up, if they've had a referral actioned, or if they're no longer a patient of your service.

27:07
It also includes education about what is the importance of having regular surveillance echocardiograms in someone with RHD as well as details to consider if you you have a pregnant female client who has RHD and the increased surveillance that is recommended throughout pregnancy.

27:23
The top image shows the 2nd and ongoing pages of the recalls, depending on the number of clients on your list, with the same details of given names and date of birth, the nominated primary or secondary providers, the date of the last echocardiogram as well as the date when it is next completed next due.

27:44
But we'll move over now to talking about some ways that we help to support follow up and ongoing care.

27:52
Now I do apologise that this is quite a large slide, but we will just talk through it.

27:56
So there's ways that the register helps to provide education to supporting ongoing care and just some considerations for helping to keep patients engaged.

28:06
So patients that with ARF, RH, do RHD are required to return for services over many years for ongoing care and management.

28:14
And this long duration of care can sometimes cause disengagement.

28:19
So it's really always important to think about how you would like to be treated and treat patients the same way.

28:24
It might sound quite obvious when we're talking about it, but we understand that in an everyday clinic, things can get extremely busy.

28:31
You have time crunches, you have conflicts and whatever else is going on in your personal life.

28:36
Sometimes things just slip your mind and we may not be presenting our best self at that time with these patients that are having to come back consistently.

28:44
If they have that over repeated episodes, it may cause a lack of trust or engagement with your health service, which will cause them to stop attendance.

28:53
And these are the patients that if they aren't attending for their regular BPG or cardiac surveillance that they're at risk of having disease progression, which can lead them down to having severe cardiac damage and cardiac surgery.

29:07
If possible in your health service.

29:08
Identifying someone to hold the ARF RHD portfolio.

29:12
So this can help to support care delivery and coordination through someone acknowledging your patient cohort list.

29:19
Coordinating you out your clinics for who's best to come in at what time.

29:23
It also helps to have someone as the identified person of contact for ARF or RHD just to further build that rapport and trust as well as to help support with education where possible.

29:35
It prompts attention on arrival to clinic for these clients as well.

29:38
Now we do understand that this is we live in a real world and you can't always just prioritise someone.

29:43
It's the moment they walk in the door, but giving some consideration to this cohort to not have them waiting for a long period of time in waiting rooms.

29:50
If they are representing for a BPG just so that they do can come in and get out again and continue on with cares.

29:58
Consider whether or not there can be multidisciplinary opportunistic engagements.

30:02
So rather than having silent appointments of BPG is due on day 28.

30:06
If someone is presenting on day 24 due to an another health condition or an antenatal examination and there's the opportunity to give the BPG, perhaps give it a little bit early rather than prevent asking the patient to come back at a later time, which may increase the chances of a non attendance.

30:24
Consider if you can cluster appointments together.

30:26
So if they're coming in for a dental check, is it possible to also do their skin check at the same time if needed?

30:33
Or if they're coming in for an echocardiogram, is it possible to do the antenatal check at the same time?

30:38
Just considering alternative ways.

30:41
Also consider alternative methods of contact.

30:43
So patients aren't always responsive to voicemails being left on their phone from an unknown caller.

30:48
They also aren't always as responsive to answering a phone call if it doesn't suit the time and day that they have.

30:54
So texts from a mobile can provide greater response as patients are able to read the message and respond in their own time when they're ready and comfortable.

31:02
If the patients are unable to engage with the service due to previous trauma, consider referral to a specialist service.

31:12
Consider whether or not you need to work with the patient based upon their schedule.

31:16
So if there's only a certain time of day that they've got access to the car or they've got to run off to other appointments, see if you can reschedule appointments that help to work in with their schedule to improve adherence and attendance.

31:30
Providing education and improving health literacy is essential to understanding to bring relevance back to disease and treatment importance.

31:39
This helps to increase adherence through acknowledgement of their own health status and taking ownership.

31:46
Providing alternative options.

31:48
So if you've got someone for example, who is attending for BPG and there is persistent refusal due to previous trauma or poor engagement, consider if they can have be trialled on an oral penicillin for a short duration of time to try to re engage with health services whilst they're building that trust and rapport.

32:05
And once they're re engaged, then changing over to hey, I am option again or working within the clinic times.

32:14
It is essential to provide culturally competent care and cultural health workers with these patients as well.

32:19
So whether they might be an Aboriginal and Torres Strait Islander health worker or whether they will be a cultural health worker of another discipline, it's important that BPG is administered earlier on time and never late.

32:31
So as we said before, if someone's presented on day 24 for another health related concern, consider giving in the BPG early.

32:39
Consider making sure that you're checking that you're using adequate pain relief or distraction options both during your BPG administration as well as afterwards and continuing to empirically and promptly treat skin sores and sore throats.

32:50
Even if a patient is on secondary prophylaxis, routine secondary prophylaxis does not replace the need for treatment for acute skin sores and sore throats, other infections, or providing infective endocarditis prophylaxis if warranted for an at risk procedure warranted for an.

33:14
So what's the role of a clinician in helping to support the register?

33:18
So if you've got any patients that are attending your service that have a history of ARF, RHD, let us know so that we can help to work with you to develop a recall system as well as to keep your centre statistics up to date.

33:29
If you, as we mentioned before, if you administer ABPG for AR for RHD, let the register know of the date of administration, whether it be at the time or whether you want to send an email of all the patients at the end of the week.

33:42
Let us know if there's been any changes to secondary prophylaxis so that we aren't sending recalls to your service unnecessarily.

33:48
So if the patients had their BPG ceased by the GP in clinic, let us know and we'll stop that recall for you.

33:55
Let us know about if there's been any echocardiograms or cardiology or specialist correspondence.

34:00
So if you at times we don't receive clinic letters.

34:03
So we may be sending you an information to say that a patient's due for an echocardiogram when they have already had one completed simply because we haven't been notified.

34:11
So just let us know so that we can update this information and we can stop sending inaccurate information out to you and also enables us to report more accurately up through to AHW.

34:23
And if there's been any movements or changes to your, your clients requirements.

34:27
So if they've left your service and they've moved to another city, if they've moved to another provider within the town, or if they've moved Interstate, let us know so that we can coordinate with that healthcare provider to ensure that recalls are being sent through to them and that they as ongoing care.

34:46
Now the register does sit on a Queensland Health server at this point in time, which does make it challenging to open up access.

34:53
It is work that we are looking into, but we are unable to have an answer to provide about its access point at this time.

35:00
Fortunately, the information that is on the register is viewable on the Viewer, which is a web based application that collates data from multiple Queensland Health systems.

35:09
It is accessible to all Queensland Health employees and it's also accessible to eligible health practitioners working external to Queensland Health.

35:18
To get access to the Red the Viewer, you will just need to.

35:21
You can Google the Viewer and it'll come up with an access link.

35:24
Otherwise, if you can't, look on our web page.

35:26
We also have details as to how to apply for access to the Viewer.

35:30
Unfortunately we don't manage access to the viewer so we are unable to provide time frames as to how long it will take someone to get access to the viewer.

35:38
At times there can be delays so it is better to put access in request access in earlier than later.

35:45
So the information that's shown on the viewer includes 2 key points.

35:48
The first one is that there is a pop up that comes up for a patient if they have a history of AFRHD.

35:54
This also includes patients that have opted out of the register just on the front screen to say that this person has a history and it is something to be aware of.

36:01
The pop up does say to refer to the Care plans tab for further details and on the care plans tab for patients that are still enrolled on the register it'll show their ARF or RHD history or diagnosis, when what year they were diagnosed, what was their latest RHD severity, what is their recommendations for follow up and care plans as well as what is their recommendations for secondary prophylaxis.

36:26
If someone has opted out of the register, the details that will show on the care plan is simply just saying that this person has opted out of the register and that ongoing care needs to continue with the local healthcare provider.

36:38
The information from the register to the viewer is updated daily at 11:00 PM.

36:45
This is an example as to what the pop ups look like on the viewer.

36:48
So the top one, the alert is that first pop up that shows up on the screen and it covers the front page to identify that someone is on the register with a history of ARFRHD and then it can just be clicked out to close.

37:00
When you are in the viewer, you will see all the tabs along the top from patient through down to events.

37:06
And if you move across to the care plans, you'll see a line that says RHD.

37:11
And if you click on that, it'll expand the section and provide further details on if the patient's on prophylaxis, when it was last given, when it's next due, how frequently, when it's due to cease severity of on last echocardiogram, next due, as well as that ARF and RHD.

37:27
It also includes our contact details of both our phone number and our email.

37:31
So this information is available 24/7 on the viewer.

37:35
So you can always check your patient's requirements if they are presenting to you and you're unsure of what their needs might be.

37:42
And as I mentioned before, if you do need a care, a clinical summary of your patient, just contact the register and we can provide that.

37:52
So we we've spoken about the data that's collected on the register, but how is the data used from the register?

37:58
So registered data can be used for a number of different purposes.

38:01
It can be used to guide local area needs.

38:03
So guiding your cohort numbers, your care provision requirements.

38:09
It can guide your staffing needs, helps with your service planning to identify if you need to, when to put clinics on, if you need to, when to refer patients on.

38:19
It also is used for your epidemiological reporting at both your local and your national level, such as through to your local, your Australian guidelines as well as through to the Australian Institute of Health and Welfare.

38:31
Data that we report on includes disease burden and variance such as percentage of female versus male, the percentage of First Nations versus non First Nations as was shown earlier in our slides.

38:42
We also report on information such as age of a patient at time of surgery, the number of surgeries that they've had related to RHD, the RHD progression.

38:51
So what was their severity at first diagnosis versus now.

38:55
Provide evaluation of interventions.

38:57
So for example, secondary prophylaxis and its relation to preventing ARF recurrence, RHD progression or surgery.

39:05
It's also used to inform new initiatives and to target education.

39:08
So targeting education may be related to identifying if there has been mis care in a certain area and you might need your local team can help to support awareness and provide education to improve follow up.

39:19
It might also be to increase just general awareness of ARFRHD.

39:25
The use of registered data can also be used to guide future initiatives and research.

39:29
For example, research might include the subcutaneous infusion of high dose benzathine benzyl penicillin that is occurring in in Australia.

39:41
So how to access the data from the register?

39:43
So if you need data from the register, just send us an email and let us know what information it is that you're requiring and for what purpose and then we'll help to guide you with the next steps.

39:53
So information that is shared from the register may be identified or de identified based upon the recipient's purpose and intent.

40:01
This confidential information that is shared from the register is protected under the Privacy Information Information Privacy Act of 2009.

40:09
So our reports may be shared with you with healthcare providers for the purpose of coordinating follow up knowing what patients care requirements are to provide treatment.

40:17
It may also be used for research or publication presentations or reports.

40:22
If it is for research, publication, education or reports, a data request will need to be submitted and this is all to comply with governance processes to protect privacy and confidentiality.

40:39
I will just reiterate that the accuracy of the data that is shared from the register is as accurate as the information received by the register as well.

40:50
So some of the resources that are available from the register.

40:54
So the Queensland Health RHD programme has an extensive suite of resources available for healthcare providers on our web page.

41:01
Our web pages screenshot is what's on the left there, that it's broken down into numerous tiles specific to resources that are available for healthcare providers or for patients and communities.

41:12
Information about the First Nations RHD Action Plan, further information about the RHD register or the RHD programme.

41:20
And we also have a link to the Let's End Rheumatic Heart Disease Together, which is in that bottom tile on the left hand side.

41:25
And that was in part a work that was done by the strategic communications team in partnership with local teams across the state to develop resources for communities specific to ARF and RHD, with some resources also in language.

41:41
On our page, if you click through to Resources, you'll find information specific for health professionals, which includes links to your ARF and your RHD notification forms, your Arfs, suspected pathway, quick reference guides for ARF and RHD, pain management guides for BPG, as well as educational videos and health promotion posters.

42:01
Under the Resources for patients and families, you'll find resources such as comic books to help tell the story of ARF or your requirement for BPG patients, preference guides for receiving BPG to give them back the autonomy of choice.

42:16
It'll also find links to patient stories, videos to help share how others are managing their AF and RHD history.

42:26
And these are just our contact details.

42:28
So that QR code will take you straight through to our web page which had all those 6-7 tiles previously shown.

42:34
If you'd like to contact us at any point in time with questions, requests for information or support, feel free to reach out.

42:41
Our emails are on the screen.

42:42
So the ARFRHD register will go through to our data teams as first point of contact.

42:47
The RHDCNCCDMU email will come through to the clinical team as first point of contact and then the Queensland RHD programme will go through to the whole programme team.

42:57
If you do send your request to 1 email and it's relevant to another team because we all work quite closely together, we'll just redirect your query to the right team members to respond.

43:07
And there are phone numbers and our fax number on the screen as well.

43:13
I will just take this opportunity to also let you know that our next education session is scheduled for Tuesday, the 21st of April the same time from 1:00 to 2:00 PM coordinated via Teams, and the topic will be about public health and ARF notifications.

43:31
Thank you for your time today and we'll open up the floor to questions.

43:48
Anyone have any questions I'd Christine.

44:01
Hi Elizabeth, thanks very much for the your presentation.

44:05
I'm actually in SA and currently employed as a rheumatic heart disease nurse consultant here.

44:13
But I just wanted to find out your thoughts about a National Register because listening to your presentation today, it's very similar to SA in that there are lots of opportunities for gaps and and missed opportunities with patients, which is unfortunately just how it is.

44:31
You know, you were talking about how your register can't link in directly with health management systems.

44:40
It's exactly the same in SA.

44:42
And just wondering what your thoughts are around a National Register and yeah, I guess funding towards that.

44:55
So I probably don't have the best answers for that, but there is definitely a benefit to having a National Register as well as state based registers.

45:01
There's positives to both sides of the coin, I suppose that a National Register, it will provide, I suppose greater surveillance of ARF and RHD across the country to provide for burden and help to support to keep alignment of care recommendations similar across the country.

45:20
But there is also still that challenge about a who is going to fund the National Register as well as the differences in the between states in terms of how individual health services manage cohorts and patients.

45:33
And follow up that there may, there is that discrepancy between states that we may not be able to get the similarities that we're hoping for.

45:41
So there definitely is benefit to it, but there probably will be a couple of obstacles that would need to be worked out along the way.

45:47
But it would it would help to with information sharing and particularly for coordination of cares across states for transient patients.

45:57
Naomi, hi there.

46:01
I think I've got the room name, it's Shami.

46:03
I'm one of the doctors that I'm not sure in the acute Medicare room like heart disease team.

46:08
So thank you for this opportunity to get more insight into the Queensland RHD registers and then bringing us all together.

46:16
I was just curious to see if you had any insight.

46:18
When I had a look at the AIHW report last year, there was quite a significant drop in the rate of ARF diagnosis in Queensland on a state level, like I think it was about 50%.

46:31
And I was just wondering, did you guys have any insights into what that is about or had any yarns about that?

46:36
But I know there's some changes to how the data is collected each year and reported each year.

46:40
So it's not like a fair direct comparison, but just curious.

46:46
Yeah.

46:46
So Queensland did go through a bit of a change in the way ARF notifications were managed towards the end of 2024, which did have a.

46:57
So that change did impact the timeliness of some notifications being completed because it was a bit of confusion from some areas as to where the notification was completed, sorry, where it needed to be submitted and that who was going to be helping with that support and follow up.

47:11
So that was only a short lived, but that with the that change process did cause a slight drop off of education as well.

47:18
And we know that education does help to promote awareness.

47:21
There usually always is increase awareness and suspicion of ARF and RHD following education that those slight changes may have been attributed to that slight drop, which isn't I believe is since picking back up again.

47:35
Thank you for that insight.

47:37
I complete that problem, Robin, hi, I work for Taurus and Cape Health District.

47:45
We've been we've stood up our own working group and we used the software best practise.

47:52
So we've done a lot of work with within that and within our reporting team.

47:57
And we've actually got a feed that we're sending into the register and the register and our report each week is compared so that when we then update it for any patients that are missing on either report, it's been a really good work to discover.

48:15
When we first started to, you know, run it, there were patients that had been, you know, there's some data quality issues.

48:23
That was it's really been enlightening.

48:24
And with that, we've done some amazing work with reporting and we can get a really quick snapshot with each community how we're going and how bicycling rates are going and education that's required.

48:36
And and yeah, so we've got a lot of work happening within our HHS around this issue.

48:42
So Yep.

48:43
And again, that National Register would be great.

48:46
But I understand exactly what you just said.

48:49
Thank you and thank you for your good presentation.

48:52
Oh, thank you, Robin.

48:54
And that's fantastic to hear that the coordination of reports between the register and your health service is working quite effectively.

49:02
And that is something that we can offer to services that if it's, if you want to do, if there wants to be that check over to see patients that are known to your service or your area to put comparison against reports to what's known on the Queensland register.

49:15
That we can pull that information to see if we do our marrying and if not, address where the discrepancies are so that we can ensure that the data going out is accurate.

49:22
Are there any other questions?

49:42
Christine, thanks, Elizabeth.

49:46
I can't help it.

49:46
I'm sounding political here now.

49:48
What's your thoughts on the funding for the state and territories around the registers and whether that's adequate to be able to support the need for patients living with rheumatic fever and rheumatic heart disease?

50:06
Unfortunately, I'm probably not the best person to answer your question, Christine, simply because I don't have a lot to do with the funding.

50:13
That's more of our managers and our directors that deal with that level of question.

50:17
I can send you a contact of a person to ask that might be able to give you some more support about that question.

50:23
But I do apologise I I don't have the greatest oversight to give you the answer that you might be hoping for.

50:38
Are there any other questions?

50:52
Christine, is there another question or is that the same hand?

51:00
Sorry, same hand.

51:02
That's OK, not a problem.

51:05
Elizabeth, this is Anna.

51:07
There's a couple of questions in the chat that we've answered, but other people might be interested about a database, our dashboard.

51:17
So we've answered that question in the chat if people want to have a look at that.

51:22
And that's about it really.

51:27
Thank you.

51:28
So the comment about a dashboard is that we are working on developing a dashboard that'll be accessible with information about ARF and RHD prevalence by HHS and you'll be able to philtre by years.

51:42
It is still under works at the moment.

51:44
And when we have further information, we'll be able to update depending on where it sits on a platform, whether it'll be openly accessible to all or whether it'll be something that we'll be able to share regular PDF reports from.

51:57
We'll keep you posted with the work that that is progressing at the moment.

52:07
All right, well, I'm thank you all so much for joining in and listening.

52:12
I will pull this to an end so that you can have 8 minutes back of your day.

52:18
If you have any questions at any point in time about the register, please feel free to reach out to us.

52:22
And even if you're not sure if it's related to the register or something that we'll be able to help with, let us know.

52:28
And if it's something that's not within our scope or remit to assist with, then we'll just redirect your query to the next best person.

52:37
Thank you all so much and we'll let you enjoy your day.

52:41
See you later.

Video transcript

Hello everybody. Welcome to the Queensland RHD Programme Virtual Education session. We will be recording today's session so it can be shared online on our webpage. I'd like to remind everyone to keep their microphones muted during the presentation and we will also leave questions till the end for Tonia to respond to. You can also add your questions to the chat if you like, and we will monitor that for response as well.

I'd like to introduce Tonia Marquardt to present today. She's the Public Health Medical Officer for the Cairns Public Health Unit, and she will be presenting on ARF and RHD diagnosis and notification. Welcome, Tonia, and I'll hand over to you.

Thank you so much. I will just start by sharing my screen, so hopefully people can let me know if it's working or not. While I'm presenting, I won't be able to actually see the teams site. So, apologies if there's any chats that I'm not responding to, but as Anna mentioned, we'll do the questions and everything at the end. Thank you.

I'm going to present on ARF and RHD diagnosis and notification. I'll just start by acknowledging the traditional owners of the lands on which everyone's joining us from. Here in Cairns, that's the Gimuy people, with Walubara and Yidingj people, and pay my respects to elders past and present and extend that respect to everyone Aboriginal and Torres Strait Islander joining us today. I will ask everyone to mute just when they join if they can.

Thanks. So ARF and RHD, you know, I'll just start by saying this is a really complex, diffuse disease and what I'm talking about today is this tiny little red drought in between primary prevention and secondary prevention, dealing with ARF and RHD cases and how to diagnose them and treat them. But I don't want us to lose sight of the bigger picture that this is a much more broad and complex condition that we're dealing with.

I think it's important to recognise that there are high risk populations, particularly people at high risk, those aged between 5 and 20 years, up to the age of 40 years, with some of these risk groups, the Aboriginal and Torres Strait Islander, Māori or Pacific people living in households affected by overcrowding and experiencing socioeconomic disadvantage. And I think it's worth always remembering that the number one thing we can do is actually deal with throat and skin infections and try and prevent cases happening and prevent these group A strep infection conditions rather than dealing with the ARF and RHD diseases down the track.

If you don't have the National Healthy Skin Guideline, I would recommend getting a copy of it and having a look through it. It's really quite a useful resource. It's regularly updated.
I'm just going to mention notifiable diseases, I work in a public health unit, notifiable diseases are the ones that get notified to a public health unit. It's a legal obligation of clinicians to notify if you see a case of a notifiable disease. There's 2 lists, there’s a national list, and there's also each state and territory has their own list. So, there's two for Queensland, but there's about 8 lists overall, one for each state and territory as well as the national list. So, it is worth if you move from one state to a different one to have another look at what are the notifiable conditions according to where you're working, because they do change according to where you're based.

In Queensland, that list is a list of the conditions and then a list of the notification requirements. And you'll see that they can be clinical, provisional and pathological. Clinical and provisional notifications are notified by clinicians to the public health unit and pathological ones are notified by laboratories to the public health unit. So ARF and RHD are both
clinically notifiable conditions. And this is important because it means that when a clinician sees a case of ARF or RHD, it's their obligation to notify that to a public health unit. And that can be just based on the clinical history, signs and symptoms. It can be predominantly on the clinical evidence. It doesn't need to be a fully fleshed out notification.

If you do see a case, notification for these conditions is done on a form. Some diseases it's done by phone, but these conditions, there are forms online, they're easily searchable through Google. And when you see a case of ARF and RHD and fill in the notification form, one of the things you'll see at the top here is ARF is a notifiable condition, report all suspected cases. So, you don't have to be certain that it's a case to have a final diagnosis. It's just based on suspicion of ARF that you will be making the notification and then submitting the form to this e-mail address CDIS-NOCS-Support@health.qld.gov.au

I’ll talk a little bit about RHD notifications first, but most of the time I'm going to focus on ARF notifications.

So RHD, predominantly, it's done with both an echo diagnosis and a clinical. A lot of RHD notifications are a little bit more straightforward, just because you often have an echo that has to meet certain criteria to meet the definition of rheumatic heart disease. And the criteria are based on the word Heart Federation's criteria, and they're based on two features. One is the valve morphology. So, does the valve have features that make it appear to look like as though it's got rheumatic damage? And then the second part is how is the valve functioning? So, are there degrees of stenosis or regurgitation that are causing a dysfunction? So those two features together make up the echo diagnosis and then the second part is the clinical diagnosis before doing an RHD notification. And these are then based on the criteria as to what stage of disease you have.

I will flag that like with all ARF and RHD diagnosis, you have to exclude other causes, such as degenerative calcific aortic stenosis before you can say that it's rheumatic. So, they do acknowledge that there's a lot of overlap in the features of ARF and RHD cases that need to be considered and other diseases considered, not just with this. With aortic stenosis, for example.

It's only been notifiable since September 2018 in Queensland. The cases that were diagnosed before September 2018 don't need to be notified to the public health unit. It wasn't a notifiable disease prior to that, but if it's been diagnosed since then, it should be notified.

I'll spend most of the time though on acute rheumatic fever. And I've got this scale here just to remind us that acute rheumatic fever is a balance. You want a high index of suspicion. We see probably every year one or two cases of absolutely classic typical acute rheumatic fever that weren't diagnosed or weren't notified to us, and you know this is.. this is why we constantly say you need to think about ARF. You need to consider it in your differentials. You need to not miss these classic cases of a kid with a limp and a fever and no other source of it, who's ARF and doesn't get picked up, and doesn't get diagnosed, and doesn't get notified. We see it all the time. At the same time, we have to balance that high index of suspicion by also not overestimating that someone who two days ago developed flu-like symptoms and came in and had a positive influenza test and had some polymyalgia and arthralgia associated with their influenza disease and say, oh, maybe that's ARF. Well, you know, so you're always trying to balance what's likely disease, do we need to notify this or not, even if it meets criteria, are there other conditions, whilst at the same time keeping ARF front of mind and not missing, especially the bundle cases. It's really difficult.

We know that ARF is an inflammatory response that happens after the group A strep infection. So a couple of weeks after the group A strep infection, the inflammatory response, which is an atypical immune response, damages the joints, the heart, the brain, or the skin, soft tissue. And it's that inflammation that then presents as acute rheumatic fever. It's far more common in children. So, if you're seeing a child with suspected ARF, your index of suspicion should go up. It's less likely if you saw a 50-year-old, for example, with arthritic joints. There are other more common presentations for arthritic joints in an older adult than you'd see in a child, for example.

So, again, don't miss the obvious thing that's sitting there in front of you, but don't overestimate everything as well. You want to consider ARF until an alternative diagnosis is being made. And one of the things that we as a team always come back to is how did the case present. So, for a case presented with flu-like symptoms and a headache, it's less likely to be ARF than a case that presented with a sore joint and a fever. For example, the other thing to keep in mind is that the symptoms can evolve over time. So, the symptoms may help you to make a diagnosis by seeing the development of the symptoms with time. So, in and of themselves, a one-off picture can be more difficult to evaluate than someone that you follow over a couple of weeks and see what's happening with the symptoms. This may be one of the simplest ways of working out whether a case is ARF or not is by seeing what the evolution of the disease is.

If you're in doubt, you can always submit a notification and discuss with the public health unit. You know, the simplest thing is to get other brains involved and bounce it around. We have a team here where we'll work things through and go, what do you think? You know, what are the pros and cons of overestimating or underestimating an ARF case?

This is Thomas Duckett Jones. So, this is the guy who developed the Jones criteria. He ran this house at the Good Samaritan in Boston. It was an 80-bed hospital and between 1920 and 1960 they treated about 3,500 kids with acute rheumatic fever. It was the leading cause of death for children between 5 and 20 years old in the 1920s and kids would be hospitalised for about three to six months. 1942, when we got penicillin, was the start of the turning around of this issue.
And he's the guy who developed the Jones criteria. So, the Jones criteria, he derived that based on observation of all these cases that he was treating and basically said if a child has these features, they have a higher probability of being a case of acute rheumatic fever than if they don't have these features.

They're divided into major and minor. So, the major manifestations are based on the locations that the inflammatory response will go to. So, joints, heart, chorea, which is a neurological inflammation, and subcutaneous nodules and everything in marginatum. So I will flag that these are slightly different these days. When Jones had them initially, Erythema marginatum, for example, was a minor manifestation for him. It's become a major manifestation in the meantime. So, these criteria do change over time depending upon the prevalence of disease and what's going on. The other component of the minor manifestations are only suggestive for ARF. They're not as specific as the major manifestations, so they can occur for lots of other conditions than just ARF. So, they're not considered sufficiently adequate to indicate that someone has ARF, although I'll come back and speak a little bit more about the ECG changes. But in and of themselves, they're considered only suggestive for ARF versus being more specific if they've got major manifestations.

And his position was that if people had two major or one major and two minor features, then they were highly, highly probable for being a case of ARF and they should have evidence of a preceding streptococcal infection. A recurrent case can have three minor because being a recurrent case or having a past history of ARF is considered like a major manifestation.
You're only allowed one feature per category. So, if you have arthritis and arthralgia, for example, so one joint is inflamed, one joint is painful, you can't claim a major and a minor manifestation. If you had carditis plus ECG changes, you can't claim a major and a minor manifestation for the same category of disease, you just claim the major.

So, I'll go through each of them, each of those criteria. So, the joint pain is the most common presenting feature, especially in Australia. It can be a mono or polyarthralgia or arthritis, arthralgia being just pain in the joint, arthritis being an inflamed, swollen, red hot joint. And even though it says polyarthralgia, typically we tend to talk about a polyarthralgia being a migratory polyarthralgia rather than a generalised polyarthralgia, although you can see that occasionally. It's important to exclude septic arthritis and other diagnoses as mentioned. The typical features are large joints, so it'll tend to be like your right knee and then your left elbow, often asymmetrical, often migratory, so moves from joint to joint, so an evanescent, so it doesn't persist. It's sort of there briefly and then moves to another joint and then another joint. So, it's not a sort of persistent weeks and weeks and weeks of joint pain.

Classic feature is being unable to weight bear and incredibly painful on movement. So, they tend not to use the limb while they've got an inflamed joint or the arthralgia going on. So, it's not like, oh, I've got pain here, here and here, and, you know, pointing to all the joints like you would get potentially with a polyarthralgia with a fever, it tends to be this joint and when I move it, it's super painful. It's also very responsive to non-steroidal anti-inflammatories and your use of these could help to inform the evolution of the pattern over time. So, when a person comes in early, you might only see a single joint and so you may get a better picture of whether it's ARF by CV evolution over time. If you commence them on NSAIDs, you may not see that evolution, so you may not see that it's migratory and going to other joints. So, some people would delay commencing the NSAIDs to help them to make a diagnosis.

They might also do it to refer someone to a hospital or to a specialist and say, you know, we might delay commencing the NSAIDs and just use paracetamol or something else to control the pain in the meantime, so that the pain hasn't already resolved by the time they're seen by the specialist service. Or you could use the NSAIDs to see the response. So, you should get a response within two or three days of using NSAIDs. If you've got the pain persisting beyond three days and they're on NSAIDs, it's very unlikely to be acute rheumatic fever. So it can work for and against as far as helping to make the diagnosis using them or not using them and different people, it depends on the circumstances, whether they might use something else in the interim or not. Might say the response to NSAID.

Don't forget to exclude other diseases such as septic arthritis by doing an aspiration.
Carditis is the next most common manifestation that we would see in Queensland. It can be delayed onset after arthritis. It's often asymptomatic. So, it's usually, in the past it was only diagnosed by a murmur, occasionally by extensive heart failure but these days with the invention of better diagnostics such as Echo and Doppler, it's easier to diagnose it sub-clinically. So, we're expecting to pick up more and more carditis by having access to Echo, Doppler and recognise the carditis that would be missed if the murmur was too soft to be heard. The only feature of carditis is a valvulitis. They have to have pathological mitral and or aortic regurgitation to be considered a case of carditis. Nothing else is considered diagnostic of carditis currently by the case definition.

Arrhythmia, I'll just mention this, in New Zealand, for example, they include arrhythmia as a major manifestation now, whereas in Australia it's considered a minor manifestation. But it is a significant feature that the heart is being damaged, maybe associated with valvulitis. It could just be an arrhythmia without regurgitation, in which case you just have the minor manifestation.

Sydenham's chorea, this is a neurological complication. It usually resolves spontaneously over a few weeks, predominantly, occasionally up to months. It's got a very high risk of carditis occurring with it. So, you need to be alert if you do see a case of Sydenham's chorea to make sure that they do get an echocardiogram to look for presence of carditis. With some, sometimes retrospectively, you'll also find that the patient had some neuropsychiatric manifestations. So, prior to the chorea actually developing, they had labile mood or depression type symptoms prior to the onset of the chorea,  and that was probably part of the same disorder. Most commonly occurs in adolescent females and is described as jerky, uncoordinated movement. It can be unilateral. It disappears when people are asleep and that's the easiest way to recognise whether it's Sydenham's career or not. Some of the classic descriptions of the milkmaid's positioning where there's squeezing fingers but can't maintain that grip and so relax and then re-squeeze, relax and re-squeeze. So, it looks like they're milking a cow, for example, or doing a spooning position or a pronator position. There's lots of YouTube videos if you need to see physically what it looks like. You can find videos online with demonstration of what this feature look like. It's a pretty late manifestation, so it's not required to have any other feature. So, you wouldn't expect them to still have necessarily strep titres elevated, any inflammation, inflammatory markers going on or fever or anything else to support it. So, in and of itself, Sydenham's chorea is diagnostic of ARF. It doesn't need any of the minor manifestations to support the diagnosis if you're seeing Sydenham's career.

Then there's the rarer ones, the sub-cut nodules. So, this is a small crop of pea-like nodules, usually around joints, so around the elbows or the knees or the spiny problem vertebra or around tendons, places like that. So, if you're seeing that, that's pretty pathognomonic of ARF. They resolve spontaneously in weeks, so they're not going to be persistent for months or years. It can also, again, be one of those evolution factors that helps you recognise that, yes, it is in line with ARF. Again, high likelihood of developing carditis if you're seeing sub-cut nodules, so they definitely need an echo to check for the presence of carditis to go with the sub-cut nodules.

And erythema marginatum, much less commonly seen really on the trunk and proximal extremities, so not down along the lower arms, hands, not up around the face at all, and tends to wax and wane during the day and again is a temporary thing, it tends to evolve and move with time.

For the minor manifestations, so the arthralgias that aren't part of major manifestations appear here. So, A monoarthralgia in a high-risk population or a polyarthralgia in a low-risk population would be considered as minor manifestations. Again, you can't put a minor manifestation in a category where you've also claimed it as a major manifestation. And then signs of inflammation. So, the fever is usually high, so you'd expect it to be up above 38, 38.5 degrees. You can use the history of a fever if the person gives the history of, I took an antipyretic, I was really having a high fever and I took an antipyretic in a high-risk population. But usually, you would expect to record an actual temperature before marking a fever as a minor manifesto, and they should have a documented fever inflammatory markers, it's important to do both the ESR and the CRP. Often only one of them could be elevated, more typically the ESR than the CRP, but it could be either. So, it's worth remembering ESR can remain elevated for longer. So not to forget, I know it's hard sometimes in more remote locations to get an ESR done, but it's important to try and get it if you can.

And then the cardiac conduction abnormalities. So again, don't claim this as a minor manifestation if you've already claimed carditis as a major. The most common thing we look for is a prolonged PR interval. And again, if it resolves over a few days to weeks, then that's quite diagnostic for ARF and much more typical for ARF. So that evolution of the disease over the following weeks can really help to solidify a diagnosis. The other part of ECG abnormalities is conduction abnormalities. So, second degree heart block, complete heart block or a junctional rhythm, pretty atypical in a kid. So, if you are seeing those, you'd want cardiac input but have a high risk of suspicion for ARF. In New Zealand this would be a major manifestation. It's not yet in Australia but we tend to treat them or think of them a little bit more like a major manifestation.

And then the third peg in the diagnosis is the evidence of a preceding strep infection. So, this is Antibody titres (ASOT / AntiDNAase B). They're not sensitive or specific of acute strep infection. They can be more useful if you get sequential titres. So, I think in Australia we tend to say 7 to 10 days, but even better at two to four weeks, you'll see more of a clear rise of the titre if it's been an acute infection. It will persist as elevated for three to six months after a strep infection. If you're living in a society or a community where you have repeat exposure to Group A strep, your strep titres may permanently be quite elevated. So, in and of themselves, they would survive, but it's important to be aware that, you know, some people just have permanently high strep titres in and of themselves, they're not very diagnostic. The other thing to keep in mind is how this was developed. So, this upper limit of normal is from a cohort of children that were assessed in Fiji. And what they worked out was that 80% of people who they didn't think had had a strep infection would have a level below these requirements. And they think 80% of ARF cases would have a level above these upper limit of normal cutoffs. So, It's only an 80% likelihood of falling in the range. And this really varies according to where the person lives and what they're being exposed to as far as strep. Again, in New Zealand, they have cut-offs of 450 and 400 for ASOT and anti-D. So just to be aware that. This isn't an exact science at all. We do sometimes see it being used as a sort of diagnostic criteria, but it doesn't really work that way. It's more of a support to what you're seeing as a clinical diagnosis.

The other way you can prove a preceding strep infection will be with a throat swab but be mindful some people are colonised with streps. That doesn't mean an acute infection can also be negative by the time you see the ARF, and the strep infections been cleared, and it varies by geography as to how many people have colonisation or strep infections at any point in time.
So Jones, we've modified the Jones criteria over time. So, in 1944 when he first developed the Jones criteria, they got adjusted in 1992 when it was recognised that as the disease became less prevalent, that they wanted the criteria to be a little bit more specific so that they weren't
over-diagnosing people. And then in 2006, they were concerned that it was too specific, and we were under-diagnosing people in a high prevalence population. So, they then separated into high prevalence and low prevalence populations as to how sensitive to make that case definition. And in 2012, they added some additional categories that will come to in 2020, tried to align with the American Heart Association. So, it depends on which country you're in as to how the criteria are being applied and they do change over time. And it's worth being aware this isn't an exact science. It's just a guide as to probability of being a case of ARF. But this hasn't changed. A definite case would still have two major or one major and two minor, or three minor in a recurrent case, plus evidence of preceding strep infection. We do now, since 2012, have probable and possible ARF. So, this was to allow clinicians who saw cases of ARF that they felt was the most likely diagnosis but where they were missing some of the criteria. Some of the reasons for that were some people had an atypical presentation. Sometimes I felt there was a delayed presentation, so people no longer had a recordable fever, or their strep changes had already fallen, things like that, so they wanted to be able to accommodate those issues, or they had an incomplete investigation if they hadn't had their strep titres done, for example. So, for that reason, they added this probable and possible where the clinician said, you know what, this is ARF, but I just can't get them to meet all of the criteria of a confirmed case. So, they came up with the probable and possible to allow for that.

So what do you do when you want to make the diagnosis? The first thing you do is with every patient, you do your history and examination. You think about, okay, what's the age of this patient? Obviously younger children are far more likely to be ARF, older people less likely. What's the risk group? Are they a high risk or a low-risk population for having ARF? What's the history, particularly of the joint pain? You know, was it migratory? Was it large joints? How long has it been there? Did it evolve over time? And do they have any past history or family history of ARF can be helpful as well. On examination, you're going to auscultate, look for any cardiac murmurs, assess any joint pain or movement. It's acutely painful or movement if they're having an ARF case. Is there any swelling, redness, heat to the joints? Do they have any signs of chorea? Do they have any of those skin nodules, for example? And do their OBS, including the temperature, to record when they've got a fever? And then if you suspect ARF, this is the point at which, okay, I've made a diagnosis, suspected ARF, at which point you have to do everything essentially. Do your ECG, have a look for PRE interval, have a look for any junctional rhythms, do your ESR and CRP, throat swab, and you commence them on regular four weekly bicillin.

So, A suspected ARF case is started off four weekly bicillin by the treating clinician who makes a suspected diagnosis. This allows time for the work up because it evolves over time. It can take a few weeks and more than four weeks to make a final diagnosis. So you do want to keep repeating the Bicillin every four weeks until a final diagnosis has been able to be made, ideally within four weeks, but sometimes 8 to 12 weeks may be required. You want to notify public health at this point in time. The suspected ARF case should be notified and you want to discuss at the hospital, organise an echocardiogram, maybe organise admission depending on
the local circumstances and how significant the symptoms are. Obviously, treat if patients are in pain, make sure that they receive some anti-inflammatories.

The notification form, so it's basically the features or the contact details of the clinician and the patient, whether it's a new case or a repeat case, and then either high risk or a low risk and what the minor and major, what the major and minor manifestations are and then what the evidence of preceding group A strep was and do they have any RHD or have they been referred for an echo. We'll point out this box. This box is essential if you're not sure what's going on. The more information you can put in there, the more it's going to help public health to work out whether you you're really thinking this is the case or you're just slightly suspicious. You know, where are you sitting? What are you waiting for? How much of A suspect case is it? What's your concern? Do you want to discuss with us? Everything like that. The more information we get in that box, the easier it is for us to work through a notification.

When you've got a high index of suspicion, so you want to notify, but you're not sure yet whether it's a case or not, what happens then is public health will often call backwards and forwards quite a few times, either with the treating clinician and the patient and try and get a picture of the evolution over time, of the level of suspicion of where the case is, when they're getting an echo done, things like that, to try and inform decision making. And at some point down the track, we will close it out. We'll either close it out as not being a case, in which case we'll communicate back to the clinician going, this case is not meeting criteria as a case, we think there's an alternative diagnosis that's more likely, or it never met criteria, so it's been closed as not a case, or we'll close it as a possible, probable or confirmed case, at which point it passes on to the Rheumatic Heart Disease Register. So, the register would then contact the clinician and say, this case has come through to us as a confirmed, probable or possible case, and this is the plan going forward for ongoing management and follow up of this case.

A couple of things I'll flag. There are resources I think are openly available from Queensland Health with some videos and these are worth having a look. I think for this topic, I think the Think ARF video is definitely worth having to watch. It's quite short, but it does help you work through. Okay, when should I think of ARF? Okay, a fever and a joint pain, don’t forget to think of ARF when someone is at high risk, a child.

Something ill flag is involving cultural support earlier. In Cairns now we have a Thriving Heart, Striving community team, which is really a great resource, but supporting patients in early days of diagnosis, working through next steps and understanding of the disease and getting that additional education and that wrapping around of some support and safety and knowledge around the condition to help them going forward.

So I think the key points are, don't forget to think of ARF and if you are thinking ARF, notify. Classic example this year was a child who went into ED with a sore joint and wasn't recognised as a possible ARF and was discharged, was seen by the GP who did recognise possible ARF and worked them up appropriately and identified that they were an ARF case but didn't notify public health, referred them into paediatrics, was admitted to paediatrics and managed in there. They also didn't notify public health. So, I would have preferred if the public health unit maybe gets 3 notification reports than zero. I don't mind if more people notify than is necessary. I think...
everyone who suspects ARF should notify unless they know someone else already has. So, on suspicion, just notify Public Health, it doesn't do any harm to let us know that there's a case that's been worked up or being commenced on treatment.

Keep in mind what the presenting features are. If they presented with something that looks nothing like ARF, it's less likely to be ARF. If they presented with something that looks like ARF, it's more likely to be ARF. Something we see a bit of is someone who, a patient who says they've got a history of ARF or RHD. Sometimes what they've got is a history of being suspected of being a case and subsequently determined not to be a case. But based on that history, they start getting bicillin and they get told that they've got ARF and all of their symptoms subsequently are
find as being part of their ARF, even if they were never a case. So just be a little bit mindful of having a history doesn't always mean they are a case and they can still get other diseases, but not every symptom subsequently is ARF.

And strep titres, we sometimes see people who see the strep titres and get really flustered thinking that that's kind of diagnostic of ARF. Someone who's had a group A strep throat infection will have elevated strep titres, will have some polyarthralgia and polymyalgia with their high fever and will meet the criteria, but don't have anything that resembles ARF. They have a classic strep throat. So don't forget to think of ARF, keep a really high index of suspicion, but it's complex, it's difficult, the features are non-specific. Try and give a lot of information and it will evolve over time. So, discuss with the public health unit and get a picture over time to help you to make a decision about whether it's ARF or not. And on that note, I'll ask if there are any questions.

Thanks, Tonia. That was a really great presentation. Has anyone got any questions? There's nothing I can see in the chat, Tonia, for you. I don't know if anyone's got their hand up.

Not seeing anyone with their hand up.

Just throwing lots of information at everyone.

Yeah, it was very good.
There's some links in the chat for everyone to go and have a look at our resources, if they...
would like to have a look at the videos that Tonia talked about and our guidelines as well.

The thing I'd say is we're always being caught out in every which way. You know, the more that we're seeing cases of ARF, the more that we're like, oh, that's a new one, that's a new one, that's a new one. So, you know, don't worry, no one's ever an expert. It's a matter of, with more time, trying to work through, okay, is this going to be a case or not? It's equally problematic in both ways. You know, sometimes you just see an absolute classic case just gets missed and you're like, how did that get missed? And then you see something that looks nothing like a case that you kind of like, okay, I can see where you're thinking that, but it doesn't look anything like a case, you know, so you don't have to notify just in case. Sometimes people get a bit scared of, you know, this could be, you know, how can I be sure it isn't and sort of head down that pathway as well of I have to notify everything just in case it might be. But trust your clinical criteria, you know, and really come back to that presenting complaint, I saw someone with gastro, you know, they had really classic gastro, diarrhea, vomiting, fever, and mentioned sore joints and mentioned that someone in their family had ARF and suddenly it was like, oh, this gastro must be ARF and it was like, okay, but you knew it was gastro, so... You know, it's okay. It's not everything is ARF just because someone's at risk for it. So, yeah.

Anna BaccariSo, can a clinician notify a missed case on behalf of another clinician if they suspect a prior history of ARF?

Tonia Marquardt  

So you mean if there was an episode of ARF in the past that was not recognised at the time, and now this person is making a subsequent diagnosis of ARF based on the information that they've received, then they're not notifying on behalf of another clinician?

They are notifying because they're the person who's suspecting ARF. If another clinician suspected ARF, that's the clinician who should have made the, who should be encouraged to make the diagnosis. I get that people move on, you know, and we certainly have cases where someone finds a retrospective note. In a medical chart and that person who made that note at that time didn't notify at that time. So in that circumstance, yes, they could flag with a public health unit, I've identified this record. We had this this year. We had a patient who was detected had had, about a year and a half earlier, someone had seen the patient in hospital and had made a diagnosis of ARF, hadn't notified the public health unit, and the patient was readmitted subsequently, maybe three or four times. And each time they were readmitted, they got told, oh, you have ARF and put back on Bicillin. Never on the register, never followed up once they weren't in hospital, but every time they went into hospital before they got by filling again because of this history in the medical record. And reading through the chart, it really wasn't clear that it was a case of ARF at the time that had been formally diagnosed. So we discussed with the treating team based on the record and made a joint decision that that was not a case of ARF and tried to put a note in the chart so this patient stopped getting bicillin every time they got admitted to hospital. So, it's tricky if you're going to notify on behalf of another clinician, you want to be sure that it's a case. You don't want to label people as having ARF RHD when you haven't actually seen the episode. So, you want to be very certain that it is a case. We do see a lot of overstating that someone has ARF when there's no evidence to support it, so it would have to meet criteria of being a case of ARF. If that case had had adequate documentation at the time that met criteria of ARF, then yes, we would have taken it as a notification, but you need more than just someone going, I think that was ARF. The other thing I'll flag is the perception that every RHD case has had ARF, you know, has had clinical ARF. I think there is a perception that, oh, there must be some previous episode of ARF and it's just been missed.
A lot of ARF is asymptomatic, a lot of carditis is asymptomatic. So, you will not expect every person with RHD to have some history of ARF that's been missed at some point in their history. It just doesn't work that way. It's not as linear as our logical minds like to make it of now we're seeing this there for that. Unfortunately. So yeah, I think if you're going to notify a missed case, you need to be certain you're putting this person on treatment. Why are you putting them on treatment? How certain are you that they're a case? But it's the person who makes the diagnosis, so if you're making that diagnosis. Then you need evidence for it. Then you can make the notification.

Anna Baccari  
Thank you, Tonia. Has anyone got any more questions for Tonia?
Okay, I would just like to thank everyone for attending our presentation today and I encourage you to keep a lookout for our next presentation that will be on the 16th of June and the topic is changes to cardiac valves, RHD versus degenerative age-related changes.
And it's being presented by Doctor Rayburn Yadav from Townsville University Hospital. So, yeah, keep a look out for that flyer. Just like to thank you all for attending, and thanks so much, Tonia.

Tonia Marquardt  
Thanks, all. See ya.