Towards consensus: The need for standardised definitions in Long (post) COVID care in 34 European countries, 2025, Bravo et al.

C

Chandelier

Senior Member (Voting Rights)

Abstract​

Background​

The COVID-19 pandemic has significantly impacted global healthcare systems, leading to challenges in managing Long COVID. Variations in definitions and diagnostic criteria across Europe hinder recognition and treatment efforts. This study aims to analyse and compare the definitions of Long COVID used in 34 European countries.

Methods​

A retrospective descriptive study was conducted involving key informants from 34 European countries, utilising an online questionnaire to gather data on Long COVID definitions. Quantitative and qualitative analyses were employed to assess the variability of definitions and challenges in managing Long COVID.

Results​

The study found significant variation in Long COVID definitions among the participating countries; the most frequent definition was the other definition (n: 17, 50.0%), followed by the World Health Organisation’s definition (n: 16, 47.0%) and the CDC definition (n: 11, 32.3%). Half of the countries reported using multiple definitions simultaneously, indicating a lack of standardisation. Qualitative analyses highlighted challenges such as difficulties in standardising terminology, variability in clinical criteria, and issues with implementing diagnostic codes.

Conclusion​

The findings underscore the need for a unified, yet adaptable, definition of Long COVID. Such a definition would support general practitioners (GPs) by simplifying diagnostic processes, improving continuity of care, and facilitating equitable patient access to multidisciplinary resources. The current lack of consensus complicates patient care, data collection, and resource allocation, impacting health policy development. Future efforts should focus on achieving agreement on definitions to ensure equitable treatment and effective healthcare responses to Long COVID.
 
science.orf.at

Es krankt schon an der Definition

In Österreich dürften bis zu 850.000 Menschen von Long Covid betroffen gewesen sein bzw. daran noch immer leiden. Während die Mechanismen für die anhaltenden Beschwerden nur bedingt geklärt sind, gibt es noch immer keine international einheitliche Definition für Long Covid.
science.orf.at science.orf.at
ORF.at wrote an article based on this study:

AI Summary: Long Covid – The Issue with the Definition

Introduction and Problem
In Austria, up to 850,000 people may have been affected by Long Covid. However, the exact cause of the ongoing symptoms remains unclear, and there is still no universally agreed-upon definition of Long Covid worldwide. This lack of clarity complicates both the diagnosis and treatment of affected individuals.

Different Definitions Across Europe
Experts from across Europe criticize the lack of standardized definitions and diagnostic criteria for Long Covid. This variety makes it harder to identify and treat patients effectively. General medicine plays a key role in the care of patients who suffer from various symptoms long after their acute Covid-19 infection. A survey of experts from 34 European countries revealed that the most commonly used definition of Long Covid is from the World Health Organization (WHO), followed by the definition from the Centers for Disease Control (CDC) in the US. About half of the countries use multiple definitions simultaneously.

Differences in Duration and Symptoms
The definitions also differ in terms of the duration of symptoms. The UK's NICE guidelines define Long Covid as symptoms lasting longer than twelve weeks, while the CDC and WHO refer to symptoms persisting for at least four or three months, respectively. All definitions emphasize the exclusion of other causes apart from SARS-CoV-2.

A “Patchwork Quilt” in Europe
Europe shows a "patchwork quilt" of definitions and diagnostic standards. For example, in Austria, the WHO, CDC, and NICE definitions are used, while other countries adopt different combinations of these definitions. This lack of uniformity not only affects diagnosis and treatment but also has an impact on research and resource allocation in health policy.

The Need for Consensus
Experts are calling for an international consensus to establish a universally accepted definition of Long Covid. A standardized definition would simplify diagnosis, improve continuity of care, and ensure equal access to multidisciplinary resources for patients. Currently, the absence of consensus complicates patient care, data collection, and the efficient allocation of resources.
Click to expand...
 
The paper said:
Half of the countries reported using multiple definitions simultaneously, indicating a lack of standardisation. Qualitative analyses highlighted challenges such as difficulties in standardising terminology, variability in clinical criteria, and issues with implementing diagnostic codes.
Click to expand...
None of those difficulties are in the problem itself, they are entirely a matter of failing to do the basic parts of the work. It also, somehow, almost never raises, and when it does the implications are never actually thought out, that there is still majority hostility to the very existence of those health problems. There are views opposed to doing anything about it, and they dominate the institutions of medicine.

To me, this is more of a "billionaires could end poverty if they wanted, and yet poverty remains, leaving only one explanation" type of thing.

The most basic parts of health care flat out don't work when they don't understand the biology, even minimally. Lacking this, having no plan B, everything is perpetually stalled and effectively blocked, a popular position within the profession. Failure is never this much of a choice. This is failure by design. There isn't even any way to unblock the stalemate: the whole process is blocked by not knowing the pathology, and knowing the pathology is deeply unpopular and not happening because the process is blocked.
Experts are calling for an international consensus to establish a universally accepted definition of Long Covid
Click to expand...
Actually this has been the #1 ask from the patient community not only from the start, but literally for decades before LC happened. So here experts are not only not doing their job, they are very late to it, and hardly bothering to put any effort.
 
No mention of PEM or ME/CFS that I could see in the paper or supplementary materials.

Does say —

Persistent symptoms following COViD-19 share features with other post-infectious syndromes, such as those following Epstein-Barr virus, cytomegalovirus, or influenza. this broader context highlights the need for a biopsychosocial approach to LC, recognising that persistent symptoms may arise from overlapping biological, psychological, and social mechanisms [31].
Click to expand...

[31] is Luntamo T, Aromaa M, Kallioinen M, et al. Functional disorders and post-viral syndromes in primary care: lessons for long COVID. Lancet Reg health Eur. 2024;38:101140. doi: 10.1016/j.lanepe.2024.101140.

That paper as referenced appears non-existent.

That DOI links to an opinion piece The overlooked burden of persistent physical symptoms: a call for action in European healthcare (2024, The Lancet Regional Health – Europe)
 
SNT Gatchaman said:
That paper as referenced appears non-existent.
Click to expand...
The first several references seem real, so I looked at the last three, after the one you referenced, which also have issues:

32. Rando HM, Bennett TD, Byrd JB, et al. Challenges in defining long COVID: striking differences across literature, electronic health records, and patient-reported information. Lancet. 2024;403(10427):1234–1239. doi: 10.1016/S0140-6736(24)00623-8.
Click to expand...
Wrong DOI, journal, and date. Actually a preprint.

33. Theoharides TC. Long COVID: a neuroimmune disorder with potential mast cell involvement. Neuroimmunomodulation. 2024;31(1):1–9. doi: 10.1159/000541741.
Click to expand...
Title doesn't appear to exist.

34. Roveta F, Tzovaras D, Barbone F. Managing post-viral symptoms in primary care: the case for integrated, symptom-based approaches. Lancet Respir Med. 2022;10(11):1045–1053. doi: 10.1016/S2213-2600(22)00501-X.
Click to expand...
Title doesn't appear to exist.
 
There seem to be major issues with the references and many appear fabricated / hallucinated. I haven’t been through systematically. Most pubmed links look ok.

The initial reference is a strange choice (Bangladesh Critical Care J 2021??) and there are refs to preprints from 2021.

The supplementary materials contain unrelated data.

There are nearly 60 authors. Have any of them checked this?

FYI @dave30th
 
I looked through all the references. Other than 31 through 34, the rest seem to be referring to real sources. The ones that do not appear to be real are all of the citations from the section "Biopsychosocial complexity and the role of the initial infection".

Interestingly, four other citations which provide a URL are links to non-existent pages. The sources do exist, but the citations include the wrong URLs for some reason. It's possible that the pages moved since they wrote the paper. At least for citation 28, I found that it used to be the correct URL using the Wayback Machine.
5. European Commission, European Health and Digital Executive Agency (HaDEA), Heide I, Lambert M, Hansen J, et al. Mapping long COVID across the EU: definitions, guidelines and surveillance systems in EU Member States. Final report. Luxembourg: Publications Office of the European Union; 2024. Available from: https://health.ec.europa.eu/publica...-and-surveillance-systems-eu-member-states_en

6. Espinosa Gonzalez A, Suzuki E. The impacts of long COVID across OECD countries. Paris: OECD Publishing; 2024. Available from: https://www.oecd.org/coronavirus/po...of-long-covid-across-oecd-countries-7a2b8e3d/

7. European Centre for Disease Prevention and Control. Guidance for health system contingency planning during widespread transmission of SARS-CoV-2 with high impact on healthcare services. Stockholm: ECDC; 2020. Available from: https://www.ecdc.europa.eu/en/publi...ing-during-widespread-transmission-sars-cov-2

28. Nittas V, Puhan M, Gao M, et al. Long COVID: evolving definitions, burden of disease and socio-economic consequences. University of Zurich/Swiss School of Public Health; 2021. Available from: https://www.bag.admin.ch/bag/en/hom...national/forschung-wissenschaft.html#99203729
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom