Long COVID prevalence has been challenging to quantify, but for most patients it gets better

Three-quarters of GPs have patients with long COVID, according to a new Healthed survey with more than 1000 participants.

Around 5–10% of COVID-19 cases in Australia have reported symptoms persisting for more than 3 months—while globally the data has ranged from 9% to 81%, according to a literature review by the AIHW.

But quantifying the prevalence has been near impossible, with studies using wildly varying definitions and timeframes, and rarely using validated questionnaires or a systematic approach, says Professor Andrew Lloyd, an infectious disease physician who is currently leading a new prospective cohort study with APPRISE, to help clarify the situation.

“It’s a dog’s breakfast,” he says, adding that the research in Australia has tended to use more conservative definitions, accounting for lower numbers reported here.
There’s also the issue that other potential underlying causes are often not investigated.

“And so immediately, there’s this notion of an attribution after the fact, that ‘I have these symptoms, it must be due to COVID’ – and some of it will be real, but some of it will be a spurious link,” Professor Lloyd says.

Most patients will recover within 12 months

Healthed asked GPs what percentage of their long COVID patients have experienced complete resolution of their symptoms.

Just over one fifth of GPs (22%) said that none of their long COVID patients had fully recovered. Another 19% said that between 1% and 5% of their long COVID patients had fully recovered. Conversely, 20% of GPs said that almost all their patients had fully recovered (between 80% and 100% of patients). Those who previously said they had zero long COVID patients were excluded from these results.

“That fits with my expectation, that if this was well-defined long COVID, and it had been present for three months or more, and it was disabling and it had been appropriately investigated, then I would expect that each GP might have a couple of such patients,” Professor Lloyd says.

“And over the last year or two in which they might have been in clinical care, only some of them would have got completely better because the natural history is slow resolution over months.”

Including international data, case rates of 30% have been reported at three months post COVID—but those numbers steadily decline to about 10% at 6 months and 5% at 12 months.

“Long covid is not relentlessly persistent and definitely not progressive. It can wax and wane, but if you look over a good interval, six months or 12 months, it just doesn’t happen that people get progressively worse,” Professor Lloyd says.

“The expectation is continuing to get better,” he says. “But there is a small subset, that are probably I think in the 1% category, that have a very persistent symptom set.”

Between 12 months and 24 months, that 5% might become 2 or 3%, and that graph continues to go downwards, potentially forever, but certainly for five years in other post viral fatigue syndromes, he explains.

In Healthed’s survey, more than 80% of GPs said at least some of their patients are seeking health assistance currently, and for many GPs this represents a significant proportion of their long COVID patients.

Overall, Professor Lloyd says the burden on the health system is huge. Part of the work he has been doing involves mapping the health services, and although the research is still underway, it’s clear that we don’t have the right resources universally in place yet.

“We are very likely to find that the services are hodgepodge –well intentioned, but not well organised,” he says. “There are long COVID clinics that I know of that are doing tai chi—complete waste of time…Or mindfulness wellbeing—now that’s probably not a complete waste of time, but it’s not really addressing the heart of the matter.”

By contrast, services that are affiliated with rehabilitation units in tertiary referral hospitals tend to be better, he says—providing multidisciplinary care, assessing and treating heart and lung issues, and using a graded rehabilitative approach. Though he says that even these aren’t quite as good as they’d recommend when it comes to incorporating the learnings from post infective fatigue or chronic fatigue syndrome
“There are just huge gaps,” he sums up.

A total of 1,382 GPs responded to Healthed’s survey which opened on 7 February 2022. GPs were allowed to skip questions, which is why each question has a different number of GP participants.

Credits

Survey conception and design– Dr Ramesh Manocha

Survey analysis and visualisation– Yasmin Clarke

Reporting and editing– Lynnette Hoffman