Post Covid-19 Syndrome naming

This post and several following have been moved from several threads.


Edited to insert:

This thread is monitoring the progress and outcome of the following:

1 Requests for creating new SNOMED CT Concepts codes for "Post COVID-19 syndrome"; "Long Covid"; Sequelae and late effects of COVID-19 (and similar terms) for addition to the SNOMED CT UK Edition; the International Edition; or any of the national editions.

2 Requests to the WHO for addition of terminology and codes for "Post COVID-19 syndrome"; "Long Covid" Sequelae and late effects of COVID-19 (and similar terms) to ICD-10; the various national modifications of ICD-10; and ICD-11.

3 Queries submitted by clinical coders or others to the NHS Digital Terminology and Classifications Query Resolution service in respect of applying ICD-10 5th Edition codes where the query relates to coding for "Post COVID-19 syndrome"; "Long Covid"; Sequelae and late effects of COVID-19 (and similar terms).

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Request for the addition of a Post COVID-19 syndrome Concept for SNOMED CT:


I've been checking the NHS Digital submissions portal fairly frequently for any submissions requesting Concept codes for Post Covid-19 related symptoms or for a Post Covid-19 syndrome.

There is now a request:


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


Request Submission Portal > SNOMED CT Submission Portal

Submission date: 19/08/20

Request 32731

Type
Add concept

Status
In Progress

Hierarchy
Clinical finding

Parent identifier
1240751000000100

Suggested name, term or description
Post COVID-19 syndrome (please double check with clinical bodies)

Priority
Very Urgent

Brief summary of the request

We would like to request concept(s) related to post COVID-19 syndrome or whatever the clinical community decide to call.

Description of the addition or change

My trust is the London COVID-19 centre and my respiratory consultants have expressed their view that currently there is a lack of post COVID-19 related concepts. These patients who either had COVID-19 (through confirmed PCR test) or a high suspicion of COVID-19. Nearly six months down the line, they started developing what they call “post COVID-19 syndrome”. Right now, we have been recording this using a list of the symptom concepts. You might want to work with the clinical bodies to author such concept request.

We need it urgently as these patients is not just a few. It is significant numbers going forward.


Request update

Source of authority

Provisional concept term

SNOMED International request reference number

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


Note that SNOMED CT Parent identifier 1240751000000100 is:


1240751000000100 | Coronavirus disease 19 caused by severe acute respiratory syndrome coronavirus 2 (disorder) |

which is currently a Concept term exclusive to the UK Edition of SNOMED CT.

 

With regard to this submission for a new concept term:

The next release of the UK Edition of SNOMED CT is scheduled for October 01.

The release package for the October update would need to be finalised a couple of weeks before the release was due to go live, which doesn't leave very much time for consultation with clinical bodies and for processing this request for creation of a new concept term(s) for "Post COVID-19 syndrome" or a similar concept term.

I will keep an eye on this submission for any change of status. Although the request search engine is public, I don't have access to the NHS Digital Submission Portal where requests are processed and where the progress and outcome of a request can be tracked.

If no new concept(s) were approved in time for addition to the October 01 release, the next release would normally be expected at the beginning of April 2021. But since the COVID-19 pandemic, NHS Digital has been issuing interim releases of the UK Edition between normal release schedule dates, so an additional release before the April 2021 release might be anticipated.


When processing this request, NHS Digital's classification and terminology leads might consider that for international consistency of terminology, any new concept term authored for a "Post COVID-19 syndrome" (or similar term) should be added initially to the International Edition and then absorbed by the various national editions. If this was felt appropriate, then the request would be referred on to SNOMED International's terminology leads for their consideration and for processing by them, in which case, a SNOMED International request reference number would be generated and inserted into the request form.


A further point, prior to the October 2015 release of the International Edition, the SNOMED CT term "Postviral fatigue syndrome" had been listed under "Children" under 52702003 | Chronic fatigue syndrome (disorder) and took the same code.

For the October 2015 release, Postviral fatigue syndrome was moved to a new Parent (or "super type") and assigned a unique code:

51771007 | Postviral fatigue syndrome (disorder)

which sits under the Parents:

Disease (disorder)
> Post-infectious disorder (disorder)
> Post-viral disorder (disorder)


Although the term Postviral fatigue syndrome has been uniquely coded for and is listed under different Parents, it continues to be mapped to G93.3 in the SNOMED CT to ICD-10 mapping tables.

So the terms: 52702003 Chronic fatigue syndrome; (and its Synonyms terms: Benign myalgic encephalomyelitis; Myalgic encephalomyelitis et al) and 51771007 Postviral fatigue syndrome all map to ICD-10 G93.3.


Note that the author of this request for addition of a new concept term for "Post COVID-19 syndrome" (subject to consultation with clinical bodies) has given the "Parent indentifier" for this proposed new Concept term as:

1240751000000100 | Coronavirus disease 19 caused by severe acute respiratory syndrome coronavirus 2 (disorder)

ie the requester has not suggested Parent identifier 123948009 | Post-viral disorder (disorder).

 

There is a code for "Post COVID-19 condition" in ICD-11 in the Orange and Blue browsers:

RA02 Post COVID-19 condition

"Coding Note
This optional code serves to allow the establishment of a link with COVID-19. This code is not to be used in cases tested positive at some point in time that did not present any illness."​

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Edited to add: From the Coding Note, it's unclear whether this optional ICD-11 "Post COVID-19 condition" term is intended to be used for "Post COVID-19 syndrome" (or similar terminology subject to consultation with clinical bodies et al) that has been requested for addition to SNOMED CT UK Edition, with the suggested Parent identifier: 1240751000000100: Coronavirus disease 19 caused by severe acute respiratory syndrome coronavirus 2 (disorder). (1240751000000100 is currently a Concept term exclusive to the SNOMED CT UK Edition).

Edited to replace screenshot with screenshot from Blue ICD-11 MMS browser.


Edited to add: The Blue ICD-11 MMS browser does not display Index terms for "Post COVID-19 condition" but these are viewable in the Orange Maintenance browser. The following Index terms are listed for "Post COVID-19 condition"

https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/2024855916

RA02 Post COVID-19 condition

Description
This entity does not have a definition at the moment. You may suggest a definition using our Proposal System available under the Contibutions menu.

All ancestors up to top

• [Chapter] 25 Codes for special purposes
• International provisional assignment of new diseases of uncertain aetiology and emergency use
• RA02 Post COVID-19 condition

All Index Terms

• Post COVID-19 condition
• postCOVID condition
• post-COVID-19 condition

 

My position is this:

How chronic post COVID-19 presentations (which will include a range of symptoms and signs, according to sequelae in various body systems, in addition, in some cases, to chronic fatigue and post exertional symptoms) are defined and the development of new terminology for diagnosing, coding and statistical reporting of these chronic presentations is a matter for collaboration and standardisation between clinical bodies, the WHO classification team (in collaboration with the WHO-FIC Collaborating Centres), the ICD-11 MSAC and CSAC committees, SNOMED International and the post COVID patient community.


Query raised with the WHO's Director-General, Dr Tedros Ghebreyesus, this morning:


https://twitter.com/user/status/1303980742536572928



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Edited to add:

This SNOMED International information page lists the current published SNOMED CT Concept codes applicable to COVID-19, including an updated SNOMED CT to ICD-10 map, and available in the interim July 2020 International Edition release.

For updates to local SNOMED CT extensions, please refer to your local National Release Center (NRC).


SNOMED CT COVID-19 Related Content

https://confluence.ihtsdotools.org/display/snomed/SNOMED+CT+COVID-19+Related+Content

This page lists the COVID-19 related Concepts codes that have already been created for SNOMED CT.

The page also lists existing relevant SNOMED CT Concept codes added to the Global Patient Set (GPS) and already published in the SNOMED CT International Edition that is being made available along with the new concepts to help with recording and sharing healthcare data during the COVID-19 pandemic.

 

Another request (#32886) was submitted on September 11. The request appears to have originally been submitted via email*:

*Text of email not available on Submission Portal.


NHS Digital SNOMED CT Submission Portal

https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=32886

Request Submission Portal > SNOMED CT Submission Portal

Submission date: 11/09/20

Request 32886

Type
Add concept

Status
Submitted

Hierarchy
Clinical finding

Suggested name, term or description
Post-Covid syndrome

Priority
Very Urgent

Brief summary of the request
Adding here to track the request via email for post-COVID syndrome

Description of the addition or change
Adding here to track the request via email for post-COVID syndrome


Request update

Source of authority

Provisional concept term

SNOMED International request reference number

 

SNOMED CT COVID-19 Related Terminology

This SNOMED International information page contains the current published SNOMED CT content applicable to COVID-19, including an updated SNOMED CT to ICD-10 map. This new content was made available in the interim July 2020 release of the International Edition:

SNOMED CT COVID-19 Related Content:

https://confluence.ihtsdotools.org/display/snomed/SNOMED+CT+COVID-19+Related+Content


For COVID-19 updates to local extensions (aka national editions) please refer to your local National Release Center (NRC) or select a national edition from the International Edition browser landing page: https://browser.ihtsdotools.org/?


For NHS England, NHS Digital manages the SNOMED CT UK Edition. A public browser can be accessed here: https://uat.termbrowser.nhs.uk/?

Note that the two requests No. 32731 (submitted 19/08/20) and No. 32886 (submitted 11/09/20) posted earlier in this thread requesting creation of a new Concept term or Concept terms for "Post COVID-19 syndrome" (or similar term, subject to consultation with clinical bodies) have been submitted via the NHS Digital SNOMED CT Submission Portal for consideration for addition to the SNOMED CT UK Edition.

The request search engine for the NHS Digital SNOMED CT Submission Portal is publicly accessible to "Guest" users here: https://isd.hscic.gov.uk/rsp/user/guest/home.jsf

Registration for access to the Submission Portal, itself, is intended for personnel working in organisations providing NHS services; unregistered users, like myself, are not able to access the platform where the progress of submissions can be tracked.

Although National Release Center managers are permitted to process and approve requests for addition of new country specific Concept terms, requests considered to meet criteria for inclusion in the International Edition are forwarded on to SNOMED International's terminology leads for processing. Terms approved for implementation in the next release of the International Edition can then be absorbed by all the national editions.

If a request has been forwarded on to SNOMED International by a National Release Center, the request form may be updated with a SNOMED International request reference number.


There is also a submission portal and formal request process for submitting requests for changes and additions to the International Edition directly to SNOMED International for use by representatives of health agencies, National Release Centers, other licensed users, and other authorised users:

https://www.snomed.org/snomed-ct/change-or-add

Customer Guidance For Requesting Changes to SNOMED CT: https://confluence.ihtsdotools.org/display/SCTCR/CRS+User+Guide?preview=/22318960/110331073/Version 9.0 CRS Customer Guidance 20200527.pdf

Editorial Guidance for authoring content can be accessed here:
https://confluence.ihtsdotools.org/display/DOCEG/SNOMED+CT+Editorial+Guide

(See Page 12 Semantic Interoperability)


Again, I don't have access to this portal where the progress of submissions can be tracked.

I cannot confirm whether any additional requests have been submitted directly to SNOMED International for creation of new Concept terms relating to "Post COVID-19 syndrome", "Post COVID-19 symptoms" (or similar terms) for consideration for addition to the International Edition.

But given how many countries are using SNOMED CT, I think it likely that additional requests will have been submitted directly to SNOMED International or via National Release Centers or will be submitted over the coming months.

 

For NHS England, the SNOMED CT terminology system is mandatory for use in electronic medical records at the point of patient care and ICD-10 Version: 2016 is mandatory for use after the encounter, for recording codes for local NHS Trusts, national data collection and WHO statistical analysis.

In order for NHS England clinicians, coders and other administrative staff to be able to record a code for "Post COVID-19 syndrome" (or a similar term, subject to consultation with clinical bodies and other stakeholders and for any related terms, eg qualifiers, that are considered necessary) a Concept term is required to be available in the SNOMED CT UK Edition and a corresponding code available in ICD-10.

If no new "non-emergency" codes can be added to ICD-10, because it has reached the end of its update life, the SNOMED CT Concept term(s) would need to be mapped to an existing ICD-10 code.


What terminology is currently being suggested?


The BMJ Practice Pointers article: Management of post-acute covid-19 in primary care, Greenhalgh et al, used the term:

Post-acute covid-19 (“long covid”).


The BMJ Letter: From doctors as patients: a manifesto for tackling persisting symptoms of covid-19 used:

persisting symptoms of covid-19.


Two requests have been submitted to SNOMED CT UK Edition which have used:

Post COVID-19 syndrome (with a request to consult with clinical bodies over terminology and related terms)

and

Post-Covid syndrome.

(There may be other requests submitted directly to SNOMED International or to some of the other national editions which we are not aware of.)



Also in use by the media and by clinical and lay advocacy groups are:

LongCovid

and

Long Covid.


Some points to consider:

NHS Digital, who are the National Release Centre for managing the UK Edition of SNOMED CT, may consider that the first request for authoring of a new Concept code meets criteria for referral on to SNOMED International's terminology leads for consideration for adding to the International Edition.

This would potentially result in a processing delay, as the International Edition is on a different submission review schedule to the UK Edition. The next release of the International Edition is not scheduled until January 31, 2021.

The next release of the UK Edition is scheduled for October 01, but these two requests submitted via NHS Direct may have been received too late for the deadline for consideration for potential inclusion in the October release but these requests can be carried forward for the next release (April 2021) or for any interim emergency release.

If NHS Digital is going to review these two submissions for the UK Edition rather than forward on to SNOMED International, consulting with clinical and other stakeholders may take time.

Sometimes, SNOMED International's terminology team will assemble an external expert advisory group to advise on a specific clinical area or to advise on the revision of an existing disorder block - so this could add to delays in approving terminology, if the requests are being forwarded for consideration for inclusion in the International Edition.

Terms added to the International Edition are usually automatically absorbed by the various national editions when they publish their next twice yearly releases.


Concept terms intended for global use need to be standardised for machine readability and to be readily understandable in English or in national edition translations.

There are already a number of COVID-19 related terms added to the International Edition and the UK Edition. The "Preferred" term for the disease in the SNOMED CT terminology system is COVID-19. Any term proposed for persistent COVID-19 symptoms would likely need to retain the precedent format, "COVID-19" - not "Covid" or "COVID".


I don't consider SNOMED CT would accept "Long Covid" or "Long COVID" or "Long COVID-19" as a Concept term.

Semantically, "Long" may be problematic.

Medical terminologies and ICD classifications tend to use the terms: "Persistent", "Chronic", "Prolonged", and "Post" (which are terms that are internationally understood as relating to symptom duration, chronicity etc). Other than "Long labour" (which is also seen as "Prolonged labour") the word "long" tends to be associated in terminology and classification systems with physical length - rather than duration of time.


If a new Concept term is being proposed for the International Edition its ability to be translated and understood by global end users will be a consideration.

Editorial Guidance for authoring content for SNOMED CT can be accessed here: https://confluence.ihtsdotools.org/display/DOCEG/SNOMED+CT+Editorial+Guide

(See Page 12 of the Editorial Guidance for note on Semantic Interoperability.)



There is already a SNOMED CT Concept term "123948009 Post-viral disorder" which might potentially be coded for, in combination with one of the existing COVID-19 related terms until a definition and terminology with international acceptability and utility can be agreed upon (and the WHO might want to input on this, too, for ICD-11, as SNOMED CT Concepts are mapped to ICD-10 and to ICD-11 codes, and any term developed for international use should be available in ICD-11):

SCTID: 123948009 Post-viral disorder:

https://uat.termbrowser.nhs.uk/?perspective=full&conceptId1=123948009&edition=uk-edition&release=v20200805&server=https://sctuat.dataproducts.nhs.uk/sct-browser-api/snomed&langRefset=999001261000000100,999000691000001104


International Edition SNOMED CT COVID-19 Related Content:

https://confluence.ihtsdotools.org/display/snomed/SNOMED+CT+COVID-19+Related+Content

 

Do the medical authorities not understand how much patients hate names like this?

 

I'm not going to get involved in another argument about who should name medical conditions.

"Long Covid" advocates have already initiated a dialogue with the WHO and will need to work towards mutually acceptable terminology. They can also submit proposals for addition of new terms via the ICD-11 Proposal platform.

Key "Long Covid" advocates are also aware that requests for a new Concept term(s) have been submitted to SNOMED CT and they can, if they wish, submit comment as stakeholders or request to be involved in the process, as stakeholders.

 

As I'm not a post Covid-19 patient, myself, nor am I caring for any post Covid-19 patients, I don't consider myself to be a stakeholder in any development of terminology for this condition - so I don't have an opinion on what terminology should be included in SNOMED CT and ICD.

 

At least they're not yet calling it post covid wrong illness belief syndrome

 

Don't give them any new ideas!

 

Unless you have undertaken research into "Long Covid" patient preferences on terminology or can cite research that has already been published, are you not making rather broad assumptions about what terminology may and may not be acceptable to, and have utility for another patient group?

 

I am seeing a lot of PTSD and emotional trauma analogies though.

 

Yes, this would be classified under post-intensive care syndrome.

I was referring to long-haulers who have never had a hospital stay.

 

(My highlighting in brown)

https://wellcomeopenresearch.org/articles/5-224

PDF: https://d212y8ha88k086.cloudfront.n...7e6-198188dab8b3_16307_-_felicity_callard.pdf

OPEN LETTER
Why the Patient-Made Term 'Long Covid' is needed

[version 1; peer review: awaiting peer review]

Elisa Perego1, Felicity Callard
https://orcid.org/0000-0002-5350-1963
2, Laurie Stras
https://orcid.org/0000-0002-0129-2047
3, Barbara Melville-Jóhannesson4, Rachel Pope5, Nisreen A. Alwan
https://orcid.org/0000-0002-4134-8463 6-8


Abstract
The patient-made term ‘Long Covid’ is, we argue, a helpful and capacious term that is needed to address key medical, epidemiological and socio-political challenges posed by diverse symptoms persisting beyond four weeks after symptom onset suggestive of coronavirus disease 2019 (COVID-19). An international movement of patients (which includes all six authors) brought the persistence and heterogeneity of long-term symptoms to widespread visibility. The same grassroots movement introduced the term ‘Long Covid’ (and the cognate term ‘long-haulers’) to intervene in relation to widespread assumptions about disease severity and duration. Persistent symptoms following severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection are now one of the most pressing clinical and public health phenomena to address: their cause(s) is/are unknown, their effects can be debilitating, and the percentage of patients affected is unclear, though likely significant. The term ‘Long Covid’ is now used in scientific literature, the media, and in interactions with the WHO. Uncertainty regarding its value and meaning, however, remains. In this Open Letter, we explain the advantages of the term ‘Long Covid’ and bring clarity to some pressing issues of use and definition. We also point to the importance of centring patient experience and expertise in relation to ‘Long Covid’ research, as well as the provision of care and rehabilitation.

 

Note that although the Open Letter on the Wellcome Open Research site states:

and

it cannot be inferred in the absence of evidence that the WHO is considering adding a code for the specific term "Long Covid" to ICD-10* or ICD-11.

*ICD-10 Version: 2019 which was released in January 2020, is the final update in the life of ICD-10, other than for addition of emergency codes, such as new viruses, and correction of errors and typos.

 

Ah. Felicity Callard. Would that be the one who did some time in KCL Psychiatry Department and then the Maudsley. Wouldn't want to be associated with ME would she? What might former colleagues think.

 

Author details:

Elisa Perego 1,
Felicity Callard 2,
Laurie Stras 3,
Barbara Melville-Jóhannesson 4,
Rachel Pope 5,
Nisreen A. Alwan 6-8


1 Institute of Archaeology, University College London, London, WC1H 0PY, UK
2 School of Geographical and Earth Sciences, University of Glasgow, Glasgow, G12 8QQ, UK
3 School of Music, Humanities & Media, University of Huddersfield, Huddersfield, West Yorkshire, HD1 3DH, UK
4 Creative Informatics, University of Edinburgh, Edinburgh, EH8 9BT, UK
5 Archaeology, Classics and Egyptology, University of Liverpool, Liverpool, Lancashire, L69 7WZ, UK
6 Faculty of Medicine, University of Southampton, Southampton, Hampshire, SO16 6YD, UK
7 NIHR Southampton Biomedical Research Centre, Southampton University Hospitals NHS Trust, Southampton, Hampshire, SO16 6YD, UK
8 National Institute for Health Research Applied Research Collaboration Wessex, University of Southampton, Southampton, Hampshire, SO16 6YD, UK


Elisa Perego
Roles: Conceptualization, Project Administration, Writing – Original Draft Preparation, Writing – Review & Editing

Felicity Callard
Roles: Conceptualization, Funding Acquisition, Project Administration, Writing – Original Draft Preparation, Writing – Review & Editing

Laurie Stras
Roles: Writing – Original Draft Preparation, Writing – Review & Editing

Barbara Melville-Jóhannesson
Roles: Writing – Original Draft Preparation, Writing – Review & Editing

Rachel Pope
Roles: Writing – Original Draft Preparation, Writing – Review & Editing

Nisreen A. Alwan
Roles: Conceptualization, Writing – Original Draft Preparation, Writing – Review & Editing