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Incomplete picture hampering long COVID response


Matt Woodley


5/12/2022 8:29:59 PM

Data gaps and inconsistent clinical definitions are hampering efforts to manage the increasingly prevalent condition.

Man shrouded in darkness with long COVID.
Data and definition limitations are making the public health response to long COVID difficult.

The Parliamentary Inquiry into long COVID and repeat COVID infections has released an issues paper identifying several themes that have emerged from the first months of its investigation.
 
According to the document, the absence of a clear, established and nationally consistent definition of long COVID is hindering care efforts, while a lack of reliable data has made it difficult to judge the true scale of the problem.
 
These themes are all too familiar for GP Dr Bernard Shiu, who has helped establish dedicated long COVID clinics in Geelong and Torquay.
 
He told newsGP data collection barriers mean health authorities are playing catch up, while the lack of an agreed-upon definition is also problematic.
 
‘[Until recently] there was no way of recording how many people had been seen in general practice, because you could not register it – so you’ve already missed two years of data,’ Dr Shiu said.
 
‘Meanwhile, we still don’t have a solid, clear definition for Australia to use. And that’s why it’s not it’s not consistent in that sense.’
 
Many definitions for long COVID refer to persistent symptoms 12 weeks after a first diagnosis, but Dr Shiu said even though these cases can now be registered more easily, further barriers have emerged when it comes to recording this information accurately.
 
‘The new problem is the diagnosis is based on anecdotal data now,’ Dr Shiu said.
 
‘It used to be PCR or rapid antigen tests, but patients hardly ever even do those tests anymore.

‘How are we going to confirm that timeline of 12 weeks? It will become even more difficult. It’s just going to be arbitrary – “Oh, yeah, I remember three months ago, I went to a wedding and after that, I started having some sniffles. And then 12 weeks later, I’ve still got symptoms”.
 
‘So it becomes very difficult … because we don’t have that tool to accurately diagnose that person when they actually get infected.’
 
Because of the difficulties recording long COVID patients within Australia’s healthcare system, it is difficult to know how many patients there currently are within the country.
 
However, previous research suggests at least 5% of people who contract COVID will go on to have symptoms more than 12 weeks post-infection, which would potentially mean hundreds of thousands of Australians are being impacted. The ‘greatest burden of care’ for these patients, according to the issues paper, will fall on primary care providers.
 
Dr Shiu says this is already happening, and that the closure of hospital based long COVID clinics will only contribute to further increases.
 
He also believes GPs are best placed to treat these patients, but that reforms are needed to help them provide appropriate care and support.
 
‘At the moment, you need to have had symptoms for more than six months before you can access a chronic disease management plan. To me, that’s mean and illogical,’ Dr Shiu said.
 
‘If you look carefully, Medicare actually says that if you think the condition will likely last for more than six months, you don’t need to wait.
 
‘For example, after diagnosing someone with osteoarthritis, you know they’re not going to magically get better the next six months … so what do we do?
 
‘We set up a guideline, we get them to start losing weight and seeing physio and strengthening their bones and joints. It should be the same thing with long COVID.
 
‘The longer we wait, the longer the suffering will be and it’s more difficult for them to recover.’
 
Aside from allowing earlier treatment, Dr Shiu says chronic disease management plans should be extended to allow for more than five subsidised allied health visits because the current limit is ‘just not enough’.
 
The inquiry is still conducting public hearings and is not expected to hand down its final report until well into 2023. In the meantime, Dr Shiu says GPs can help by encouraging patients – particularly those from culturally and linguistically diverse (CALD) communities – to register with the practice when they test positive and to seek help not only during the acute phase, but also if symptoms persist.
 
‘We just did an audit on the 132 patients that we’ve seen since June in our Geelong long COVID clinic and we have had two CALD patients only,’ he said.
 
‘We know they are out there. We know. But they are just not accessing care.
 
‘Every time a patient comes in, we should ask them, “Hey, have you had COVID? If you have, do you remember the date?” And that will really help us to collect the data better.’
 
He also recommends that GPs engage in ongoing education around the condition, similar to other ailments like diabetes, and to begin treatment as soon as possible.
 
‘You really have to personalise the care to that particular patient,’ Dr Shiu said.
 
‘I just came off a long COVID meeting with my team, along with the Austin and Royal Melbourne hospitals, and we were just talking about how every single one of the patients is different and that treatment is a combination of different things.
 
‘That sort of personalised care needs to be very holistic, and GPs are the best doctors to deal with that.
 
‘I would say don’t over-investigate … if you’re not too sure, get some help – get a specialist involved or talk to one of the long COVID doctors that have had more experience.
 
‘Then, once patients are deemed safe enough to start rehab. Don’t wait. Get them started.’
 
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