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For those facing Long COVID, a call for concerted national action

Introduction by Croakey: Aggressive primary prevention of COVID-19 has helped Australia escape the pandemic scale of disaster experienced in some countries – so far, at least.

But little is known here or internationally about what will be required to care for people with Long COVID, those with persistent symptoms many weeks and months after a COVID-19 diagnosis.

Croakey journalist Linda Doherty reports on a new issues brief from the Deeble Institute for Health Policy Research which calls for a shift in focus from governments and healthcare systems to care for the emerging needs of these so-called COVID ‘long haulers’.


Linda Doherty writes:

A national COVID-19 registry is urgently needed as a “precautionary investment in the future” to manage the long-term impacts of the pandemic, with up to 5,400 Australians estimated to have developed Long COVID to date.

That’s a key finding of ‘Managing the long term health consequences of COVID-19 in Australia’ from the Australian Healthcare and Hospital Association’s Deeble Institute for Health Policy Research.

The national registry should combine data on patients with COVID-19 and their subsequent health and healthcare history for ongoing surveillance and to understand the costs of care and improve services for people with Long COVID.

This would help manage the potential deterioration of patients who could suffer organ damage due to COVID-19 or as yet unknown complications such as neurological conditions seen after other viral pandemics.

“Serious complications or organ impairment, mental health conditions, possibility of readmission and mortality from the acute phase, and long-term conditions seen in children have been widely reported in the [medical literature],” the issues brief said.

The Conversation reported this week that an ongoing study of COVID immunity at the Walter and Eliza Hall Institute in Melbourne found one-third of participants had Long COVID 45 weeks after diagnosis.

And Melbourne University professors Alex Holmes and Louis Irving wrote that the most common symptoms from patients in their Long COVID clinic in Melbourne were fatigue, shortness of breath, chest pain, heart palpitations, brain fog, muscle aches and sleep disturbance.

“But it can also include very diverse symptoms like loss of smell and taste, increased worry especially in relation to one’s health, depression, and an inability to work and interact with society. In some of these people, it’s almost as if there’s a process that’s affected every part of their body,” they wrote.

National centre needed

The Deeble Institute issues brief, led by Associate Professor Martin Hensher, Deputy Director of Deakin University’s Institute for Health Transformation, recommended the establishment of a national post-COVID Centre of Excellence to lead research and modelling on the impact of Long COVID in different population groups, and to develop clinical guidelines that reflect evolving evidence on the long-term management of patients.

“The COVID-19 pandemic is dynamic, highly uncertain, and far from having stabilised in the Australian health sector. The low numbers of people infected with COVID-19 to date in Australia could change rapidly if control measures were to fail,” the issues brief said.

“It will be important for governments to develop a workable strategy to ensure that those who will suffer longer-term health consequences from COVID infection can be well-treated and cared for in the months and years to come.”

A key ingredient in a long-term strategy was the development of a purpose-built dataset because Australian healthcare data architecture and infrastructure “does not yet support the levels of data integration and linkage seen in some high-income healthcare systems” such as England and Scotland.

“[Australian] surveillance systems are not tracking ill-health and long-term consequences of COVID-19,” the issues brief said.

Questions about planned registry

A national data registry should incorporate state and territory SARS-CoV-2 testing results, contact tracing datasets, and data on all those who had returned a positive test result, including testing conducted in the private sector, the Deeble Institute issues brief said.

It noted that “limited” information was available on the registry under development by the Australian Institute of Health and Welfare (AIHW).

“This would allow large-scale population surveillance of the health status of people who have been infected with COVID-19, driven by an active contact and follow-up process to seek consent to participate, and with a significant role for patients themselves in providing data. It would also allow case-finding of Long COVID patients who are not receiving adequate care at present,” the issues brief said.

In response to questions from Croakey, the AIHW said the registry would be available “as soon as practicable” and it was currently working through the necessary administrative, ethical and governance procedures, and liaising for the supply of state and territory-held data.

“Currently, the AIHW has received ethics approval and is working through other approval processes to link COVID-19 case data with Medicare, prescription, hospital, aged care, immunisation and deaths data from the first recorded case in Australia in January 2020 up until data supply (estimated to be approximately 18+ months of data),” an AIHW spokeswoman said.

“While there is no set date yet as to when it will be complete, we are working towards having the register ready as soon as practicable. Strict privacy procedures will be in place for the register.”

The register would be used for research into the medium and longer-term health effects of COVID-19 to inform health service planning, monitoring and evaluation, and health policy development at the national and state and territory level.

The register “will aim to include” all cases who tested positive to COVID-19 in Australia since the start of the pandemic, including those tested in the private sector. But it would not include information on those who returned a negative result or information from contact tracing datasets.

Global caseload

Estimated cases of Long COVID in Australia are low by international comparisons but the percentage of people who suffer these persistent symptoms is relatively high here and in the United Kingdom and the United States where research is continuing.

Managing the long-term health consequence of COVID-19 in Australia estimates that between 2,867 and 5,413 Australians had developed Long COVID by April 2021.

Australian and international studies are showing that up to half of the survivors of COVID-19 report a worsened quality of life after contracting the disease. An Irish study found 52 percent of people with COVID-19 reported ongoing severe fatigue 10 weeks later and one-third of the study participants had yet to return to work.

In one of the largest studies by the UK Office for National Statistics, 70,000 people in the United Kingdom had Long COVID 12 months after diagnosis. In a small Australian study of 99 people, 18.5 percent had Long COVID 34 weeks after first falling ill.

“Although estimated case numbers in Australia of Long COVID are low, the international experience suggests that integrated, well-coordinated multidisciplinary care with patients at the centre is required,” the issues brief said.


See Croakey’s articles on chronic diseases.

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CRANAplus conference 2014
Cultural Solutions - Healing Foundation forum 2014
Lowitja Institute Continuous Quality Improvement conference 2014
National Suicide Prevention Conference 2014
Racism and children/youth health symposium 2014
Rural & Remote Health Scientific Symposium 2014
2015 conferences
#CPHCEforum
#CRANAplus15
#HSR15
#NRHC15
#OTCC15
Population Health Congress 2015
2016 conferences
#AHHAsim16
#AHMRC16
#ANROWS2016
#ATSISPEP
#AusCanIndigenousWellness
#cphce2016
#CPHCEforum16
#CRANAplus2016
#IAMRA2016
#LowitjaConf2016
#PreventObesity16
#TowardsRecovery
#VMIAC16
#WearablesCEH
#WICC2016
2017 conferences
#17APCC
#ACEM17
#AIDAconf2017
#BTH20
#CATSINaM17
#ClimateHealthStrategy
#IAHAConf17
#IDS17
#LBQWHC17
#LivingOurWay
#OKtoAskAu
#OTCC2017
#ResearchTranslation17
#TheMHS2017
#VMIACConf17
#WCPH2017
Australian Palliative Care Conference
2018 conferences
#6rrhss
#ACEM18
#AHPA2018
#ATSISPC18
#CPHCE
#MHED18
#NDISMentalHealth
#Nurseforce
#OKToAsk2018
#RANZCOG18
#ResearchIntoPolicy
#VHAawards