Alison Barrett writes:
Wide-ranging concerns about COVID communications have been raised throughout the pandemic, highlighting the importance of tailored, clear and consistent messaging, especially when so much has been inconsistent, contradictory and confusing.
At Croakey we were therefore interested when the Federal Government’s response to the long COVID inquiry used the terminology, ‘Post-Acute Sequelae of COVID-19’ or PASC, when the inquiry and almost all media and public communications uses ‘long COVID’.
The National Post-Acute Sequelae of COVID-19 Plan says PASC is used “to represent individuals who have new or ongoing symptoms twelve weeks after being infected with SARS-CoV-2, that are not explained by an alternative diagnosis”.
It says long COVID is a term used commonly in the community to describe both ongoing symptomatic COVID-19 (symptoms lasting more than four weeks) and PASC.
The Government says it has chosen to use the term PASC in lieu of long COVID “to encompass the wide range of presentations and symptoms that can be experienced after the acute phase of COVID-19, and to recognise the potential long-term impact of COVID-19 on multiple systems in the body”.
The Government says a nationally consistent definition of PASC is a key enabler for research, surveillance, diagnosis and management, and the definition may need to be reviewed as new research and evidence emerges.
“Such a review would require input from researchers, clinical and surveillance experts, and the states and territories.” (Croakey notes recent calls for health consumers to be more closely involved in such policy decisions).
Croakey also notes that the PASC Research Plan, released by the Department of Health and Aged Care last July, uses PASC and long COVID interchangeably: “Post-acute sequelae of COVID-19 (PASC), also known as long COVID, is the term given to prolonged symptoms experienced by some people following the acute phase of COVID-19 infection.”
As part of a larger survey about the Government’s responses to the long COVID inquiry, Croakey asked a range of experts for their views on the use of PASC vs long COVID.
While the reasons for using PASC in the National Plan were understood and by some thought to be most appropriate, most of those surveyed acknowledged the potential for public confusion.
Associate Professor Suman Majumdar at the Burnet Institute also noted that ‘long COVID’ was the term “given by the people affected” by long-term symptoms following acute COVID-19 infection.
Below are health sector responses to questions about the National Plan referring to PASC, rather than the more widely used long COVID.
Potential for confusion
Kristy Cooks, member of the APPRISE Executive and Co-Chair of the FIrst Nations Pandemic Research PreparednesS NeTwork (FIRST) Governance Group.
The terminology used might not be something that the public is used to and can be confusing and might not be appropriate for the general public/consumer groups/communities.
‘Long COVID’ has been used for a few years and is a term known to the general public as being associated with symptoms or conditions that develop after having a COVID-19 infection.
A more encompassing term
Professor Martin Hensher, the Henry Baldwin Professorial Research Fellow in Health Systems Sustainability at the Menzies Institute for Medical Research
On balance, I prefer PASC. While there is considerable value in the more popular ‘long COVID’ term, this refers to a particular (albeit large) subset of ongoing symptoms some people suffer following a COVID-19 infection.
PASC also includes a potentially wider range of longer-term impacts (including elevated risks of developing a wide variety of other chronic conditions) following COVID infection; some of these impacts may not even manifest for many years.
So PASC provides a more encompassing term and is more appropriate for policy; being clear that what most people mean by ‘long COVID’ is a subset of wider PASC.
Clarity needed
Dr Elizabeth Deveny, CEO of Consumers Health Forum of Australia
We can certainly understand why the World Health Organization and Department have made the change from talking about long COVID to PASC, but we really wonder how many everyday Australians know about PASC.
In the Department’s response they acknowledge that the community really are saying long COVID to cover both long COVID and PASC, and I suspect that the public won’t really stop calling it long COVID in the immediate future. It’s not exactly like Post-Acute Sequelae of COVID-19 really rolls off the tongue.
We really want to make sure that consumers don’t get confused by the terminology change and the Department and Government should continue to use language that consumers are used to and comfortable using.
We would really encourage the Government to reduce medical jargon and the need to spell things out when talking to the community about long COVID.
Increased risks
Aboriginal Medical Services Alliance Northern Territory (AMSANT)
We don’t have a strong view but long COVID has entered into popular use and will be recognised by the public. However, it is important for the public to understand that COVID-19 can increase a number of illnesses such as diabetes and heart disease and PASC can encompass these adverse outcomes.
From the AIHW, “a recent systematic review and meta-analysis found a 1.8-fold increased risk of developing diabetes in the post-acute phase of COVID-19 compared to the general population (Zhang et al. 2022 accessed at Diabetes: Australian facts, Impact of COVID-19 – Australian Institute of Health and Welfare (aihw.gov.au)”
COVID also increases the risk of heart disease and dementia and causes worsening of symptoms in people who do have dementia. It will be impossible to tell in an individual if a diagnosis of diabetes or heart disease post COVID-19 was due to COVID-19, but the impact across a population is clear.
Precision needed
Rural Doctor’s Association of Australia President, Dr RT Lewandowski
While we recognise that long COVID has gained popular usage in the community, it is a colloquial term and represents different things to different people that has come to be used to describe symptoms progressing from or progressing longer than expected from a COVID-19 infection.
When it comes to doctor-patient interactions, long COVID will be a very acceptable ‘colloquial’ term for these symptoms. It is important, however, that when researchers, healthcare professionals and government use terminology for policy, research or treatment, terms with as much precision as possible be used.
There is understanding that the WHO uses the term Post COVID-19 condition to describe this collection of symptoms and that there is an ICD-10 code already assigned to this term. Post-Acute Sequelae of COVID-19 (PASC) is an adequate descriptor as well, and not likely to be confused with colloquial terms.
We have no particular feeling about which of the terms should be used, but think it is critical that there be agreement so there is no ambiguity, or as little as possible, when interpreting policy or in applying diagnostic criteria.
We therefore support use of the term PASC with the definition presented in the National Plan, but recognise that, when it comes to doctor-patient interactions, long COVID will be a very acceptable ‘colloquial’ term for the condition.
Understanding matters
Paige Preston, General Manager of Policy, Advocacy and Prevention Programs at Lung Foundation Australia
Lung Foundation Australia understand the value in distinguishing between ongoing symptomatic COVID-19 and post COVID-19 conditions.
Although researchers and health professionals may be familiar with PASC, long COVID is currently the term that resonates with and has meaning for consumers, and what’s most important is making sure the condition is being discussed and understood by the community and the health sector.
Complexities
Associate Professor Suman Majumdar, Chief Health Officer – COVID and Health Emergencies; and Deputy Program Director, Health Security and Pandemic Preparedness, Burnet Institute
There is confusion in specific terminology, which is a product of the fact this is novel disease, and that the science is emerging. The national plan adopts the WHO definition but appears to use long COVID and PASC interchangeably. Importantly, long COVID was the term given by the people affected.
Currently long COVID is a group of symptoms (over 200) or a “syndrome,” and there is no simple “test.”
It is likely that different clinical and research definitions will need to be used. The discovery science on how the COVID virus can cause long term effects is striking, concerning and is coming along in leaps and bounds – so things will evolve.
What is most important is that we are talking about symptoms AND conditions that persist or recur or are new after an acute COVID infection.
Symptoms can include shortness of breath, brain fog, lethargy, tiredness, and loss of smell. In addition, COVID-19 can also lead to the development of chronic conditions, including diabetes, heart disease, stroke, depression and dementia.
Recognition matters more than labels
Glen Ramos, PhD researcher on pandemic management, a public health policy consultant, and a Director of Australian Health Promotion Association, Australian Epidemiological Association, and Public Health Association of Australia (NSW Branch)
There are many cases where formal or clinical names for a medical condition or disease are different to commonly used terms – Influenza and Flu, Rhinovirus and Cold, SARS-CoV-2 and COVID-19.
As long as there is an agreed definition, then it’s not something that would make a substantive difference to those who are experiencing the condition.
The recognition that this is a serious condition is significantly more important than what label we give it.
Less accessible
Dr Steven Faux AM, Rehabilitation and Pain Physician, Conjoint Professor at St Vincent’s Clinical School
The term used relates to the WHO term which is Post COVID-19 condition (long COVID).
The Government chose to remove the reference to long COVID – I assume that means it is focused on the research and service provision community, rather than consumers who will know it as long COVID.
It is nomenclature that is correct but less accessible and perhaps obfuscating.
In conclusion…
• Croakey is seeking responses from the Department of Health and Aged Care to questions raised in this story and part one in the series, Do more, do better: experts respond to the Australian Government’s plans on long COVID
See Croakey’s extensive archive of articles on long COVID
