Post Covid-19 Syndrome naming

There was also this earlier query, submitted in May, to the NHS Digital Terminology and Classifications Delivery Service for responding to queries from clinical coders, NHS bodies, academic institutes or a non-coding professionals:

NHS Digital Query Resolution Database

Query UID: 13293

Date of resolution 18 May 2020 | Date added to database 18 May 2020 | Classification ICD-10 5th Edition

Query: Sequelae and late effects of COVID-19

Screenshot URL: https://dxrevisionwatch.files.wordpress.com/2020/10/query-1-18-may-2020-2.png

 

the BMJ opinion

https://blogs.bmj.com/bmj/2020/10/01/why-we-need-to-keep-using-the-patient-made-term-long-covid/

Why we need to keep using the patient made term “Long Covid”
October 1, 2020

“Long Covid” was first used by Elisa Perego as a Twitter hashtag in May to describe her own experience of a multiphasic, cyclical condition that differed in time course and symptomatology from the bi-phasic pathway discussed in early scientific papers, which focused on hospitalized patients. Just three months later, following intense advocacy by patients across the world, this patient made term has been taken up by powerful actors, including the World Health Organization.* Politicians have used it too: Matt Hancock, UK health secretary, recently explained to a parliamentary committee that “the impact of long covid can be really debilitating for a long period of time.”

“Long Covid” has clearly struck a chord. However, it’s not the only term being used to describe persistent symptoms: we’ve also seen post-acute covid-19, postcovid syndrome, and chronic covid-19. As patients and professionals, we see “Long Covid” as better able to navigate the socio-political, as well as clinical and public health challenges, posed by the pandemic in the coming months, for a number of reasons:

1 Long Covid acknowledges that cause and disease course are as yet unknown

Long Covid emphasizes that the cause of long-term symptoms and the point at which the acute phase of covid-19 ends remain unknown. Its strength is in its non-specificity. It reflects humility by acknowledging uncertainty. Long Covid may well include several conditions that have more than one aetiology, even in one patient. It’s too early to assume that after 2–3 weeks, all patients are “post-viral.” Potential for viral persistence requires research.

(...)

Elisa Perego is Honorary Research Associate at University College London. Her current research focuses on health and disability in present and past societies. @elisaperego78

Felicity Callard is a Professor of Human Geography at the University of Glasgow whose research focuses on health, patient/service user experiences, and medical humanities. @felicitycallard

Laurie Stras is Research Professor of Music at the University of Huddersfield, and Professor Emerita of Music at the University of Southampton. @LaurieStras

Barbara Melville-Jóhannesson runs a linguistics and artificial intelligence project, funded by Creative Informatics at the University of Edinburgh. @keyeri

Rachel Pope is Senior Lecturer in European Prehistory at the University of Liverpool, her research focuses on archaeological data analysis. @preshitorian

Nisreen A Alwan is an Associate Professor in Public Health at the University of Southampton and an Honorary Consultant of Public Health at University Hospital Southampton NHS Foundation Trust. @Dr2NisreenAlwan

#LongCovid #CountLongCovid

Competing interests: All authors have experienced prolonged covid-19 symptoms, and have participated in various kinds of Long Covid advocacy.

Full blog


Related blog:

https://blogs.bmj.com/bmj/2020/09/0...ge-about-long-covid-and-we-will-act-says-who/

We have heard your message about long covid and we will act, says WHO
September 3, 2020

---------------------------------------------------------------------------------


*Ed: No code for the term "Long Covid" has been created by the WHO for addition as an emergency code to ICD-10, or for addition to ICD-11.

Three requests for creation of new Concept codes for addition the the UK Edition of SNOMED CT have been submitted and are pending review and processing.

 

https://www.nice.org.uk/news/articl...id-covid-19-guideline-will-address-long-covid

NICE & SIGN announce latest rapid Covid-19 guideline will address Long Covid

NICE and the Scottish Intercollegiate Guidelines Network (SIGN) have today (5 October 2020) announced they will work with the Royal College of General Practitioners (RCGP) to develop a guideline on persistent effects of Covid-19 (Long Covid) on patients.

05 October 2020

 

I suspect that this will all make as much sense as it would to categorise all the illnesses caused by EBV under "Long EBV".

 

Thank you @Dx Revision Watch for keeping us up to date on the formal ins and outs of the ‘Long Covid’ naming issues.

It will be interesting to see how much the science drives the naming and the naming process drives the science. Will it ultimately be seen that Covid-19 triggers a number of issues including lung, heart and neurological issues and syndromes such as ME, whose origin ultimately becomes irrelevant to their long term management, or that ‘Long Covid’, under whichever name comes out on top, becomes a useful and meaningful diagnostic category even when the current pandemic is just medical history?

As discussed in other threads here, will the management of those ‘Long Covid’ sufferers with ME or ME like symptoms be ultimately best subsumed under broader ME management, being regarded as ME with just another trigger or will they be best regarded as having a distinct though overlapping condition? Will the naming process help in reaching these decisions or as people in the ME world have long argued with the introduction of the name CFS be a barrier to forwarding research and understanding?

Also given the numbers of people involved how will this impact on the broader medical and the popular understanding of ME? If ultimately those ‘Long Covid’ sufferers with ME like symptoms are regarded as having ME, it will see the size of the ME lobby dramatically increase, but alternatively it could have the reverse effect of fragmenting ME into subgroups such as ‘long EBV’ or ‘long influenza’.

Certainly we in the ME world are very aware that ‘a rose by any other name will smell as sweet’ does not actually apply to modern medicine.

[corrected typos and edited for clarification]

 

I've received this message, this morning, from @WHOICD11


https://twitter.com/user/status/1314132634780471297



The relevant links are:

Emergency use ICD codes for COVID-19 disease outbreak: https://who.int/classifications/icd/covid19/en/

COVID-19 coding in ICD-10, 25 March 2020: https://who.int/classifications/icd/COVID-19-coding-icd10.pdf

and at the bottom of the above page:

Post-COVID-19 Codes
zip, 819kb

which contains this PDF document in Arabic; Chinese; English; French; Portuguese; Russian and Spanish:

Activating post COVID-19 codes in ICD-10: Update 3 in relation to the COVID-19:
https://dxrevisionwatch.files.wordpress.com/2020/10/activating-post-covid-19-codes-in-icd-10_en.pdf


These are additional emergency codes for ICD-10 which have not yet been incorporated into ICD-10 browsers. Equivalent codes have already been added to the Blue and Orange ICD-11 browsers (under the RA01 COVID-19 emergency code block, under parent: International provisional assignment of new diseases of uncertain aetiology and emergency use):

Screenshot from PDF (my caveat in red): https://dxrevisionwatch.files.wordpress.com/2020/10/icd10postcovid-19.png




Edited to add:

Spanish version: Actualización 3 con relación a COVID-19:
https://dxrevisionwatch.files.wordpress.com/2020/10/activating-post-covid-19-codes-in-icd-10_sp.pdf

 

https://twitter.com/user/status/1314153749309460481

 

https://twitter.com/user/status/1314279261218447362

 

Thread discussing potential terminology:

https://twitter.com/user/status/1315201161411125248

 

https://twitter.com/user/status/1315220784231653376


https://twitter.com/user/status/1315296704846090242

 

Callard, F., Perego, D.E., How and Why Patients Made Long Covid, Social Science & Medicine

https://doi.org/10.1016/j.socscimed.2020.113426

Available online 7 October 2020, 113426
In Press, Journal Pre-proof

 

NIRH = UK National Institute for Health Research

NIHR: Living with Covid19, 15 October 2020

A dynamic review of the evidence around ongoing Covid19 symptoms (often called Long Covid).

https://evidence.nihr.ac.uk/themedreview/living-with-covid19/

(...)

Diagnostic uncertainty

As yet there is no diagnostic code for ‘Long Covid’ meaning this experience is not captured in routine clinical datasets. ‘Long Covid’ is a term widely used on social media but is not a well-defined term and not a diagnosis used widely by clinical staff. The lack of empirical diagnostic tests may mean that a number of different conditions may be falling under a single umbrella term.

This does not mean the steering group feel that testing for the Covid19 virus is a prerequisite to being considered to be ill with ongoing Covid19. Indeed, some expressed reservation about relying on testing, having seen a number of patients who have had a series of negative tests but with blood count and chest x-ray clearly showing Covid19.

It was noted that some people have drawn parallels with post-viral syndrome, although the general view of the group was that it is too early to conclude that the experience of living with Covid19 is always post-viral syndrome. Indeed there is a possibility that the symptoms described may be due to a number of different syndromes (e.g. Post-Intensive Care syndrome, Post-Viral Fatigue syndrome and Long-Term Covid syndrome). Some people may be suffering with more than one syndrome at the same time.

Some members of the steering group cautioned against settling on a fixed definition at this early stage of understanding the disease and felt the International Classification of Functioning, Disability and Health (ICF-developed by the World Health Organization) provides a better standard language and a framework for the description of health and health-related state.

However, the consequence of not having a formal diagnosis also has implications. For example, the military Covid19 rehabilitation service found that the psychological impact of not having a formal Covid19 diagnosis can inhibit people from engaging with their rehabilitation programme.

For others, a diagnosis is a gateway to getting support and access to specialist services. Many people had their initial symptoms in April and May 2020 when community testing in England was suspended. Symptomatic people were unable to get tested and are left in limbo, without a positive test but past the stage at which they would test positive. For those who were not admitted to hospital, there is often no other clinical data and they are reliant on people believing their history of the disease.

The steering group felt it important to acknowledge the term used by people with experience of living with Covid19 without committing everyone to using the same term and to encourage people to be mindful not to put all ongoing symptoms down to Covid19, when these may be attributable to other concurrent diseases.

(...)


Key Messages

(...)

• A major obstacle is the lack of consensus on diagnostic criteria for ongoing Covid19. A working diagnosis that is recognised by healthcare services, employers and government agencies would facilitate access to much needed support and provide the basis for planning appropriate services. Whilst it is too early to give a precise definition, guidance on reaching a working diagnosis and a code for clinical datasets is needed.

 

Twitter thread here discussing status of development of codes for "Long COVID-19" for primary care, SNOMED CT and ICD-10:

https://twitter.com/user/status/1317047009774362625


https://twitter.com/user/status/1317140776506314752


https://twitter.com/user/status/1317132464557613058


https://twitter.com/user/status/1317135032021037058


https://twitter.com/user/status/1317187850845159424

 

Thread continued:

https://twitter.com/user/status/1317223847502913536


https://twitter.com/user/status/1317141966371627008


https://twitter.com/user/status/1317199276863295489


https://twitter.com/user/status/1317212426648100865



Note: Dr Chris Bates is Research & Analytics Director for TPP SystmOne. TPP SystmOne is the electronic health records system used by many NHS England GP practices for patients records.

Note also that @Dr2NisreenAlwan's Twitter posts cannot be viewed as her account is now protected and her posts can only be viewed by her Followers.

Edited to add: Dr Nisreen Alwan's has since unlocked her Twitter account.

 

Isn't there, I don't know, some sort of standard process for something like that? So far it looks like a free-for-all where people shout their opinion and some echo farther. Is that how this usually happens?

I always had the image in my mind that this went through a serious process through official conferences or workgroups, with evidence being presented and, I don't know, analyzed and such. Science, in a nutshell. In reality it looks far more like politicking than anything else. So far anyway. Maybe that process just hasn't started, if not then what is the hold up?

 

According to Trish Greenhalgh there is a committee (Professional Standards Board) working on this, under chair, Prof Maureen Baker CBE:

https://twitter.com/user/status/1315296704846090242

 

Let's have a poll of patients diagnosed with MUS to see what term they want to use.

 

The review status of the first of the three (known) requests for addition of terminology to the SNOMED CT UK Edition (or potentially for addition to SNOMED CT International Edition)

Request Submitted 19/08/20 Request ID: 32731

https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=32731

remains marked as "In Progress".

I am monitoring daily for any update to the status of this request and the other two that have been submitted since. (There may also be additional requests submitted directly for consideration for addition to the International Edition - but I don't have access to the International Edition's request database.)


NHS Digital (the National Release Centre for SNOMED CT UK Edition) were discussing terminology with the WHO back in July:

"...We can confirm that we are in discussions with the World Health Organisation regarding the coding of post COVID-19 conditions, but we are yet to receive further information about the outcome of these discussions."

The WHO has been asked to clarify whether they are considering terminology for post COVID-19 symptoms.

Their response (in Post #48) lacks clarity and refers me back to the WHO document posted in Post #46: https://www.s4me.info/threads/post-covid-19-syndrome-snomed-coding.16833/page-3#post-293029


I will update this thread when more information on development of terminology becomes available.

 

Advocates with an interest in COVID-19 and post COVID-19 sequelae might consider contacting the relevant health agencies in the U.S., Canada and other countries to establish what involvement they are having in the development of standardised terminology for post COVID-19 conditions.

 

WHO member state countries communicate with the WHO and the CSAC and MSAC ICD-10 and ICD-11 update and revision committees via designated WHO Collaborating Centres.

Some of these reps are members of WHO-FIC committees that meet via regular teleconferences (WHO-FIC Council and WHO-FIC Council SEG), the summaries of which used to be publicly available but are no longer publicly archived - so I can't glean anything useful from these since I can no longer access them.

SNOMED CT Concept codes are cross-mapped to ICD-10 and ICD-11 codes and SNOMED CT and WHO have a MOU to work towards alignment between the two systems.

The National Release Centres for some of the countries which maintain national editions of SNOMED CT are listed here:


https://browser.ihtsdotools.org/?

SNOMED CT National Release Centers:

SNOMED Argentina
Australian Digital Health Agency
Federal Public Service Health, Food Chain Safety and Environment, Belgium
Canada Health Infoway, Canada
The Danish Health Data Authority, Denmark
Nictiz, Netherlands
The National Board of Health and Welfare, Sweden
UK Terminology Centre, NHS Digital, United Kingdom
National Library of Medicine (NLM), United States
Salud.uy, Uruguay