Updates on status of ICD-11 and changes to other classification and terminology systems

Exactly! Whether it was purposeful or just neglectful, this is exactly the situation in the US.

At the IACFS/ME conference, CDC reported that they were unable to identify ME/CFS in US electronic health records using ICD codes alone. It required a manual chart review which is expensive and time consuming.

Reports on US mortality and morbidity of ME/CFS and researchers looking for ME/CFS cases in US electronic health records - including those Long COVID studies that NIH and CDC are planning - are unlikely to do that manual chart review.

Edited to add:
For ME/CFS - This is the fourth time since 2011 that updates to the US ICD coding have been considered. The previous proposals were rejected because of a lack of stakeholder consensus on how to fix the US ICD coding problem. Stakeholders in this case include e.g. patients, medical associations, coding associations, etc.

It's such a mess that there is no single solution to the US ICD codes acceptable to all stakeholder. But the status quo is also not acceptable. We need to find a way to move forward.

 

POTS has been included in ICD-11:

https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/1533647472

8D89.2 Postural orthostatic tachycardia syndrome


I am in the UK but have been able to listen in to the audio of the meeting and view presenters' slides.

Details on ways to join the meeting can be found on page 7 of the Diagnosis Codes Topic Packet.


Day 1 of the meeting has just been wrapped up. Day 2 will open at 9.00am ET tomorrow (2.00pm GMT) (Wednesday).

Meeting stops for lunch between 12.30pm - 1.30pm ET (5.30pm - 6.30pm GMT).


The agenda topics are not being discussed in the order in which they are listed in the Topic Packet.

The Procedure Codes were discussed first before moving on to the Diagnosis Codes. One of the meeting chairs mentioned that the Diagnosis Codes agenda is one of the fullest they have had, with 47 topics tabled for discussion.


Neither Postural orthostatic tachycardia syndrome (POTS) (page 167 in the Diagnosis Codes agenda) or

Postviral and Related Fatigue Syndromes (page 169)
Traci Ramirez
Mary Dimmock

were reached today. So I shall be resuming the Zoom meeting tomorrow.

 

Ah, good, so this would be to bridge the time until full adoption of ICD-11, then? Given the renewed urgency of Long Covid.

 

Member states may implement ICD-11 and any country specific versions at different times. We don't have a date by which the US will fully implement ICD-11 and any US specific version.

But the US did not implement its version of ICD-10 (the ICD-10-CM) for electronic health records until 2015 - even though it was released by WHO in the early 1990s.

So in the US, we are likely to be using the ICD-10-CM for a number of years. The POTS and ME/CFS coding changes will allow us to capture that in the meantime.

 

Woah, rvallee...

January 1, 2022, is the earliest date from which member states can begin using ICD-11 for reporting data but very few countries will be ready to transition from ICD-10 to ICD-11 by that date.

Even the earliest implementers are going take several years to evaluate the new edition, hold consultations with end user stakeholders, determine how they will use ICD-11, complete translations, produce training and implementation materials and prepare their health systems for migration.

NHS Digital, for example, has said: "No decision has been made for the implementation of ICD-11 in England, however NHS Digital plan to undertake further testing of the latest release and supporting products that will inform a future decision."


Canada, the US, Germany, Australia and a number of other member states use clinical modifications of ICD-10 which their respective health agencies are responsible for developing and updating. These countries have their own update and revision processes and update schedules.

The Australian Institute of Health and Welfare (AIHW) has conducted and published a review of ICD-11 to inform and assist decision-makers about the new edition and its potential for adoption in Australia.

Canada uses a modification of the WHO's ICD-10, known as ICD-10-CA, developed by the Canadian Institute for Health Information (CIHI). CIHI is also participating in the testing of ICD-11 and assessing the implications for potential implementation in Canada.

CIHI has said that no decision has been made for the implementation of ICD-11 in Canada and that they are currently working on a number of initiatives to better understand the differences between ICD-10-CA and ICD-11 to help inform the business and statistical implications of adoption.

For Canadians, you can follow CIHI's progress towards adoption of ICD-11 here:
https://www.cihi.ca/en/submit-data-...ssifications/icd-11-international-statistical


The US agency, NCVHS has initiated the process of planning for transition to ICD-11 at the federal level. In November 2019, NCVHS sent a 7 page letter plus attachments to the HHS Secretary advising a research agenda and communications plan towards the adoption of ICD-11 for mortality use and the potential adaptation of ICD-11 for morbidity use. NCVHS is looking into updating this letter (see Post 477 for links for letter to HHS).


The adoption of ICD-11 for US mortality use would not be subject to the rule making process and NCHS considers that implementation of ICD-11 for mortality records might be feasible within just a few years.

However, the US has not yet determined whether it would be able to use ICD-11 for morbidity use "out of the box" with the addition of some extra codes, or whether a clinical modification of ICD-11 will need to be developed and if so, how long that might take to develop, test and begin rule making for.

The WHO is still in the process of developing its policies for the licensing of ICD-11 for adaptations. Rather than have multiple adaptations of ICD-11 with differing content, the WHO would prefer to incorporate all the country specific variances within the core ICD-11 MMS linearisation.

So the US is a long way yet from being ready to implement ICD-11 for morbidity, or begin rule making for an adaptation of ICD-11.


For those in the US interested in the progress towards adoption of ICD-11 for mortality and adoption of ICD-11 for morbidity use (or development of a clinical modification), the meetings of NCVHS are the ones to follow: https://ncvhs.hhs.gov/meetings-meeting/

There is an ICD-11 subcommittee and CDC's Donna Pickett often presents at these meetings.


A virtual meeting of the U.S. National Committee on Vital and Health Statistics, Full Committee Meeting, took place on March 31-April 1, 2021:

Agenda: https://ncvhs.hhs.gov/meetings/full-committee-meeting-7/

On meeting Day One, there were two presentations on ICD-11 and the potential development of an ICD-11-CM adaptation for morbidity use:

An ICD-11 update from Margaret Skurka, NCVHS member:
Presentation slides: https://ncvhs.hhs.gov/wp-content/uploads/2021/04/H-ICD-Update-Margaret-Skurka-508.pdf

and

Comparative Analysis of ICD-10-CM with ICD-11 for Morbidity Coding from Kin-Wah Fung, Scientist, NIH/NLM:
Presentation slides: https://ncvhs.hhs.gov/wp-content/uploads/2021/04/I-ICD-Kin-Wah-508.pdf

which presented data drawn from this 2020 paper:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7309235/

The new International Classification of Diseases 11th edition: a comparative analysis with ICD-10 and ICD-10-CM
Kin Wah Fung, Julia Xu, and Olivier Bodenreider

Journal of the American Medical Informatics Association, 27(5), 2020, 738–746
doi: 10.1093/jamia/ocaa030


Slide #1:



Slide #32:




Slide #33:



Transcript of Meeting Day One: https://ncvhs.hhs.gov/wp-content/up...Full-Committee-Meeting-March-31-2021R-508.pdf

(The transcript for Margaret Skurka and Kin-Wah Fung's presentations starts on Page 66-75 of this transcript.)


Another NCVHS Full Committee Meeting took place on September 9-10, 2021:

https://ncvhs.hhs.gov/meetings/full-committee-meeting-8/

Agenda item:

3:15 p.m. Subcommittee on Standards

• Action: Letter to the Secretary with Recommendations for Immediate Action on ICD-11

Margaret Skurka & Valerie Watzlaf NCVHS members​

(Transcript of meeting not yet available.)

Margaret Skurka & Valerie Watzlaf's presentation slides:

Update: Recommendations for Immediate Action on ICD-11 Subcommittee on Standards September 9, 2021
https://ncvhs.hhs.gov/wp-content/up...on-ICD-11-Update-NCVHS-Skurka-and-Watzlaf.pdf

 

Day 2 of NCHS/CDC C & M meeting. Meeting has just stopped for lunch. Resumes at 1.30pm ET time (6.30pm GMT).

Discussion of proposals for creation of a unique code for Postural orthostatic tachycardia syndrome (POTS); and for changes to the coding of "Postviral and Related Fatigue Syndromes" are not yet reached.

There appear to be around 20 agenda topics to be got through in the final 3.5 hours of today's meeting.

 

Well, that felt rushed compared with the amount of time allocated to discussion following many of the presentations over the last two days; and rushed compared with the amount of time allocated to discussion whenever this topic has been presented, in the past (when it has been Donna Pickett who has presented background materials or alternative proposals alongside advocacy org proposals). At this September meeting, I don't think Donna contributed to any of the presentations or raised any technical points after presentations.

The three main presenters on behalf of NCHS were David Berglund, MD; Cheryl Bullock; Herman Thurman; Shannon McConnell-Lamptey; and Traci Ramirez.

I got the feeling that NCHS's Traci Ramirez couldn't wait to move on to the next topic.

There were two commenters:

Guido den Broeder, ME Vereniging Nederland, who opposed the proposal for addition of the term: Myalgic encephalomyelitis/chronic fatigue syndrome at proposed new sub-code, G93.32, to the Tabular List of ICD-10-CM; and also opposed the proposal to add the term Systemic exertion intolerance disease [SEID] to the Index, indexed to proposed new sub-code, G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome.

Erica Remer, Physician, Consultant in Documentation, CDI, and ICD-10, raised a query in relation to LongCovid and the potential for application of either of the proposed new sub-codes, G93.31 Postviral fatigue syndrome and G93.32 Myalgic encephalomyelitis/chronic fatigue syndrome.


Diagnosis Codes Topic Packet:
(Pages 169-172)

https://www.cdc.gov/nchs/icd/Sept2021-TopicPacket.pdf

An audio of Day 2 should be available shortly.

[Edited to add additional information.]

 

To access recordings of Day 1 and Day 2 of the NCHS/CDC ICD-10-CM Coordination and Maintenance Committee Meeting
September 14-15, 2021:

(Recordings are not yet available but I will keep an eye today and tomorrow on the CDC webpage and will post the link and password for the recordings when they have been posted. I will also post links for any presentation slides of interest that are available.)

Diagnosis code portion of the recording and related materials: https://www.cdc.gov/nchs/icd/icd10cm_maintenance.htm


From the "housekeeping" notes at the beginning of the Diagnosis Code Topic Packet:

"Those participating in the Zoom Webinar may ask questions during the Q&A portions of the meeting using the “Raise Your Hand” feature. If time does not permit you to comment or ask a question during the Q&A session, you may submit comments and questions at any time using the “Q&A” feature.

All comments and questions submitted using the “Q&A” feature, along with CDC's responses to them, will be posted as soon as possible after the meeting on CDC’s web page located at: ICD - ICD-10-CM - Coordination and Maintenance Committee (cdc.gov). Remaining questions may be submitted via the ICD-10-CM mailbox at nchsicd10cm@cdc.gov"​

(Again, I will post a link for the Q&As once available.)


Having ploughed through Day 1 and most of Day 2, I didn't stay on the Zoom webinar beyond the Postviral and Related Fatigue Conditions segment, so I did not catch the presentation for:

Postural orthostatic tachycardia syndrome (POTS)
David Berglund, MD
Jeffrey R. Boris, MD FACC FAAP
Pediatric Cardiologist
Medical Advisory Board, Dysautonomia International

(Page 167 of the Topic Packet)

I know a number of you are interested in this presentation, so when the recording of Day 2 is available I will post timings for both these segments.

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

Deadline for receipt of comments/feedback on any of the proposals presented at the September meeting:

November 15, 2021 Deadline for receipt of public comments on proposed new codes and revisions discussed at the September 14-15, 2021 ICD-10 Coordination and Maintenance Committee Meeting being considered for implementation on October 1, 2022.

 

Recordings and presentations for the September 14-15 C & M Meeting are now posted:

https://www.cdc.gov/nchs/icd/icd10cm_maintenance.htm

September 14-15, 2021

Proposal Materials (Diagnostic Codes Agenda/Topic Packet)

September 2021 Presentations

Look for penultimate Zip file
Thursday, September 16, 2021 2:00 PM 6107393 Sept 2021 PPT.zip

(I have attached the PDF for the Postviral and related fatigue syndromes slides and the PDF for the POTS slides for ease of access.)


November 15, 2021 is the deadline for receipt of public comments on proposed new codes and revisions discussed at the September 14-15, 2021 ICD-10 Coordination and Maintenance Committee Meeting being considered for implementation on October 1, 2022.

To access the recordings with the integrated audio transcript:

Day 1:

Topic: September 2021 ICD-10 Coordination & Maintenance Committee Meeting

Date: Sep 14, 2021 08:01 AM Eastern Time (US and Canada)

Copy the link below to share this recording with viewers:
https://cms.zoomgov.com/rec/share/a...lIp3HYKksjtQz0ns8u3HLzTi_cI-.7e19OfpKFS4De7ZV

Passcode: uNp8#j#4


Day 2:

Topic: September 2021 ICD-10 Coordination & Maintenance Committee Meeting

Date: Sep 15, 2021 07:59 AM Eastern Time (US and Canada)

Copy the link below to share this recording with viewers:
https://cms.zoomgov.com/rec/share/U...-f-AqlwYh1NWPDVawjzC2CEUjxCg.yHF2Cy_7xX0LVdGW

Passcode: $E33^Cb@

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

Timings for both these presentations in the next post (Post #510).

 

September 14-15, 2021 ICD-10-CM Coordination and Maintenance Committee Meeting

Day 2 (September 15):

https://www.cdc.gov/nchs/icd/Sept2021-TopicPacket.pdf

Agenda topic: Page 169: Postviral and related fatigue syndromes

Traci Ramirez (NCHS)
Mary Dimmock (on behalf of The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, #MEAction, Open Medicine Foundation, Solve M.E., Massachusetts ME/CFS & FM Association, the Minnesota ME/CFS Alliance, and Pandora Org)

Slides: https://dxrevisionwatch.files.wordp...fatigue-and-other-related-syndromes-final.pdf (also in attachment in previous post)

Day 2 Recording and slides:
https://cms.zoomgov.com/rec/share/U...-f-AqlwYh1NWPDVawjzC2CEUjxCg.yHF2Cy_7xX0LVdGW

Password: $E33^Cb@

Topic begins at: 04:22:25 ends at 04:40:38.

[Keep listening beyond the point at which Traci Ramirez says (at 04:38:18): "Now I'm going to pass the virtual baton..." because at that point, Dr Erica Remer raises a query around coding and Long Covid.]

On the right of the audio and slides, you should see an auto scrolling transcript of the presentations.

Note: Towards the end of the POTS presentation there is some discussion of conventions for the use of acronyms/abbreviations in the Tabular List which may also be relevant to the proposals for Postviral and related fatigue syndromes.

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


Day 2 (September 15):

https://www.cdc.gov/nchs/icd/Sept2021-TopicPacket.pdf

Agenda topic: Page 167: Postural orthostatic tachycardia syndrome (POTS)

David Berglund, MD
Jeffrey R. Boris, MD FACC FAAP
Pediatric Cardiologist Medical Advisory Board, Dysautonomia International

Slides: https://dxrevisionwatch.files.wordpress.com/2021/09/postural-orthostatic-tachycardia-syndrome.pdf (also in attachment in previous post)

Day 2 Recording and slides:

https://cms.zoomgov.com/rec/share/U...-f-AqlwYh1NWPDVawjzC2CEUjxCg.yHF2Cy_7xX0LVdGW

Passcode: $E33^Cb@

Topic begins at: 05:05:16 ends at 05:23:25

On the right of the audio and slides, you should see an auto scrolling transcript of the presentations. This contains some mis-transcriptions.

Note: Towards the end of this presentation there is some discussion of conventions for the use of acronyms/abbreviations in the Tabular List which may also be relevant to the proposals for Postviral and related fatigue syndromes.

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

Roughly the same length of time was allocated to the POTS presentation and questions as allocated to the Postviral and related fatigue syndromes presentation and questions.

 

Thanks so much for all your most generous hard work, Suzy, and for sitting through that marathon Zoom meeting for us all! Hope you’re not too exhausted.

 

Partial transcript from the last 5 minutes of the circa 20 minute presentation:

Agenda topic: Page 167: Postural orthostatic tachycardia syndrome (POTS)

[Note: This extract discussing use of acronyms in ICD-10-CM is a cleaned up transcript based on the automatic audio transcript. I've striven for accuracy but some transcribing errors may remain.]


David Berglund
05:17:51 Thank you Lauren Styles. And next, let's move to the coding; this is on page 168 for those following along.

Looking at the Tabular modifications that are being proposed here at G90 Disorders of autonomic nervous system, it's being proposed to add a new code G90.A for Postural orthostatic tachycardia syndrome, with also inclusion terms to be added as Chronic orthostatic intolerance and Postural tachycardia syndrome. So that's a fairly brief set of changes being proposed. Do we have any comments questions or other things here? It looks like Dr Remer is raising hand.

Erica Remer
05:18:45 Yeah, we need to stick "POTS" in there, too, don't you think, for the inclusion?

David Berglund
05:18:52 You'd like to see just "POTS", yeah, P...O...T...S?

Erica Remer
05:18:55 Yes, thanks.

David Berglund
05:18:59 Not to be confused with Cause of injury: "Getting hit with a pot" or something?

Jeff Boris
05:19:05 More importantly, not to be confused with Pot's, "P...O...T...S" - Pot's disease, which is spinal tuberculosis and I can't tell you the number of times that I have seen that and it's an incorrect diagnosis for these patients.

Erica Remer
05:19:22 That would be quite a surprise to them: Oh, I have tuberculosis.

Jeff Boris
Correct. That's an old eponym.

David Berglund
05:19:32 Yeah, yeah, that's a good question too, then. So that is one we can look at; we don't always include all of the potential abbreviations that can be found, but that is one we can at least look further at.

I think there were some concerns internally, that the term "POTS" might be confusing for some people, and certainly the "Pot's spinal tuberculosis that may be one that we have indexed, I suppose, that's well - an older term - as it were, that could get confusing if people...

Erica Remer
05:20:16 I think you should take a look at your explanation up above on Page 167 - use "POTS" all over the place.

05:20:25 And I think you know as a clinician, I used to use "POTS" all the time, so I would think that you know, like you, don't want the coders to have to go query a doctor, did you really mean "Postural orthostatic tachycardia syndrome" if they use the acronym "POTS", just saying.

David Berglund
05:20:42 I remember, I remember as an intern, getting quizzed on using the term "COPD", my goodness.

Erica Remer
05:20:52 You are showing your age, David.

[Laughter]

David Berglund
05:20:57 Yeah, yeah, oh goodness.

Jeff Boris
05:21:00 And actually, David, just in case you really want to get particular, there is another use of the term "POTTS" - P...O...T...T...S, so two "Ts - which is a left subclavian to, to... pulmonary shunt, that used to be used prior to the Blalock–Taussig-Thomas shunt - patients who have cyanotic congenital cardiac disease.

David Berglund
05:21:29 So if some of these do get a little confusing, I suppose, that is, I will definitely acknowledge, one reason we sometimes get a little hesitant about adding abbreviations to ICD, itself; we will take this under advisement and we could at least consider using the four letters "POTS" to refer to this; although, given the potential for other types of use or meaning, we tend to encourage people to spell it out if they can, but that said, well it's enough words that are long enough that I can see how people don't always want to do that.

David Berglund
05:22:21 All right, other...
We have a comment from Penelope Deotte?

Penelope Deotte
05:22:29 Yes, Penelope Deotte from Optum360 and my only other comment was - we do have the convention, where we could put the acronym in the code title in brackets, we have that in a few places and [barely audible: rather than?] an inclusion term...we could do that. But I'll put that in my comments as just another thought.

David Berglund
05:22:57 And that is something we will contemplate. I won't give any final decisions on that aspect but we'll be considering this and we appreciate comments in writing by email on this, we'll be glad to look at that.

Any other comments or questions at this time?

Marvelyn Davis [Moderator]
05:23:22 Not at this time.

David Berglund
05:23:25 All right.
Thank you, thank you, Dr Boris for presenting.

Jeff Boris
05:23:31 Thank you for this opportunity, appreciate it.

[Discussion of topic item ends]

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

Note that the term: Postural orthostatic tachycardia syndrome has been included in ICD-11 since at least 2016 and is discretely coded for in both the ICD-11 Foundation (the linearization that contains all the entities) and the ICD-11 MMS (the ICD-11 equivalent to the Tabular List which contains a sub-linearization of the Foundation).

https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/1533647472
https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/1533647472

8D89.2 Postural orthostatic tachycardia syndrome


Note also: The acronym "POTS" has not been included under Synonyms/All Index Terms (nor has it been added to the end of the concept title term in brackets). Nor is the acronym "POTS" included in the data base for the ICD-11 Coding Tool (which functions as ICD-11's electronic Index).

I would suggest that a POTS advocacy org and/or clinical allies request the addition, via the Proposal Mechanism, of the acronym:

POTS - [postural orthostatic tachycardia syndrome]

under All Index Terms.


For ICD-11, the convention for acronyms is:

ICD-11 Content Model 2011

https://dxrevisionwatch.files.wordp...20model20reference20guide20january2020111.doc

Page 59

Use of acronyms​

An acronym is an abbreviation formed from the first letters of other words and pronounced as a word (e.g. NASA). Acronyms may never be used for titles of categories. They should be added as synonyms to the appropriate spelt out disease entity thus facilitating identification of the relevant cases and categories.​

The ICD-11 convention format is, for example:

Under Synonyms/All Index Terms:

• CFS - [chronic fatigue syndrome]
• ME - [myalgic encephalomyelitis]
• PVFS - [postviral fatigue syndrome]

 

You're welcome, Blueskytoo. When agenda items are discussed out of the order in which they are listed in the Topic Packet, it is very frustrating for members of the public not to know on which day a specific topic will be reached and a rough idea of the timing. This was also a very full agenda.

 

It was Dysautonomia International who had successfully requested the addition of the term Postural orthostatic tachycardia syndrome to ICD-11. I noted a couple of days ago that the ICD-11 listing did not include the acronym "POTS".

I contacted @Dysautonomia via Twitter and suggested they submit for the addition of the acronym:

POTS - [postural orthostatic tachycardia syndrome]​

in the format above (which is the ICD-11 convention for acronyms) under Synonyms/All Index Terms and they are going to submit for this.

If accepted, that should set a precedent for NCHS also adding the acronym to ICD-10-CM (as discussed towards the end of Dr Jeff Boris's presentation, on Day 2 of the September C & M Committee meeting). Unfortunately, the Postural orthostatic tachycardia syndrome (POTS) term can't be added to the WHO's International Edition of ICD-10 (Version: 2019), as WHO is no longer supporting annual updates for ICD-10.

 

https://www.mdpi.com/1648-9144/57/10/1012

Turning a Corner in ME/CFS Research
by Derek F. H. Pheby, Kenneth J. Friedman, Modra Murovska, Pawel Zalewski

NCHS ICD-10-CM C & M Proposals meeting, September 2020:

Unofficial transcript from closing minutes of discussion of agenda topic item: Page 169: Postviral and related fatigue syndromes

https://cms.zoomgov.com/rec/share/U...-f-AqlwYh1NWPDVawjzC2CEUjxCg.yHF2Cy_7xX0LVdGW

Password: $E33^Cb@

Topic begins at: 04:22:25 ends at 04:40:38.

Dr Erica Remer
04:38:25 Erica Remer: I just wanted to make a comment, we do have to sort this out because this is one of those COVID 19, Long Covid things. So we need to make sure we sort of get this right and I'm trying to understand because when Tony [Fauci] talks about ME, CFS and he relates it to COVID but would that be under Postviral fatigue syndrome? I'm trying to figure out how this would fit in clinically.

Traci Ramirez (NCHS)
04:38:56: Right now we are...it's too soon to actually add that...there's still much...

Dr Erica Remer
04:39:13 No, I just want to make sure that we...that if people are using like if they're finding this Long Covid I want to make sure they know whether they're supposed to be documenting it and getting it into G93.31 or G93.32.

Traci Ramirez (NCHS)
04:39:29 Right right now there's so much work to be done on that. It's a little too soon to really say which one it would go under, at this point and we have been talking about it, but right now, I know, Dr Fauci - he talks about it - but there's still a lot of unknown.

Mary Dimmock (on behalf of IACFS/ME, SOLVE M.E., #MEAction and four additional US advocacy orgs)
04:39:55 Tracy could I add a comment to that? The ME and CFS can follow both viral and postviral as we talked about and the category is being expanded to include that. If a patient is diagnosed with ME/CFS following any virus or any infection or any other reason they should get the code for ME/CFS and that doesn't mean you wouldn't have something else, but if they meet the criteria for this, they should have a code for it and that's why I want to get the tracking correct.

Traci Ramirez (NCHS)
04:40:32 Right Okay, thank you, Mary.


[Traci Ramirez closes discussion of agenda topic: Page 169: Postviral and related fatigue syndromes and swiftly moves on to the next agenda item.

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

SNOMED CT US Edition contains these Concept codes:

Post-acute COVID-19 (disorder)
SCTID: 1119303003

1119303003 | Post-acute COVID-19 (disorder) |
en Post-acute COVID-19 (disorder)
en Post-acute COVID-19
en Long COVID-19
en Long-haul COVID-19
en Symptoms attributed to SARS-CoV-2 infection that persist for more than four weeks following onset and with a negative infectious virus status.

and

Chronic post-COVID-19 syndrome (disorder)
SCTID: 1119304009

1119304009 | Chronic post-COVID-19 syndrome (disorder) |
en Chronic post-COVID-19 syndrome (disorder)
en Chronic post-COVID-19 syndrome
en Chronic COVID-19 syndrome
en Symptoms related to COVID-19 that persist more than 12 weeks following onset.



ICD-10-CM Tabular List FY 2022 release: Chapter 22: Page 1977

https://dxrevisionwatch.files.wordpress.com/2021/06/icd10cm-tabular-2022.pdf

contains these codes:

U09 Post COVID-19 condition
U09.9 Post COVID-19 condition, unspecified

Note: This code enables establishment of a link with COVID-19.
This code is not to be used in cases that are still presenting with active COVID-19. However, an exception is made in cases of re-infection with COVID-19, occurring with a condition related to prior COVID-19.

Post-acute sequela of COVID-19

Code first the specific condition related to COVID-19 if known, such as:
chronic respiratory failure (J96.1-)
loss of smell (R43.8)
loss of taste (R43.8)
multisystem inflammatory syndrome (M35.81)
pulmonary embolism (I26.-)
pulmonary fibrosis (J84.10)

 

They just go in unprepared to those discussions? They don't even read a brief, just go in dry and muse about things? No wonder these things take years, they don't have a clue and no one seems able to even care.

And the "so much work to be done". It's been 18+ months, on top of at least 5 decades prior. The work hasn't been done, hence why there is so much work to be done. It basically works like the "invisible hand of the market"? They just want for someone to do the work. Maybe. At some point. Not anyone in particular, though, it has to happen randomly, by pure chance?

This is all very typical of bureaucrats who feel absolutely no stake in the work they do. It doesn't affect them, it's not their money or their interest so it can all die in committees too bored to even bother faking interest.

The absence of leadership is blatant. They sort of defer to Fauci, who hasn't done a damn thing and won't. And neither will Collins. Like they're waiting for someone to tell them what to do. But neither won't, clearly there is no such thing as leadership in this field, I haven't even seen the shadow of it. But they fully defer to it. This is just great, these people are paralyzed by indecision, are waiting on instructions from absent leadership.

 

Where Traci Ramirez (NCHS) says "so much work to be done on that" she was referring to the coding of "Long Covid", which had been raised by Dr Erica Remer*, for which there are currently only emergency codes within ICD-10 and ICD-10-CM (although two codes are available already in SNOMED CT International Edition and SNOMED CT US Edition).

In the past, it has always been CDC's Donna Pickett who has presented and discussed the technicalities around ME and CFS NOS proposals submitted by advocacy orgs and any alternative options being presented by NCHS for consideration at the same meeting. But I agree, in general, Traci Ramirez seemed to be poorly briefed to be presenting the NCHS proposals for the G93.3 and R53.82 terms and I would have preferred to have seen Donna Pickett** presenting and discussing both the orgs' proposal and the alternative option authored by NCHS.

It was also an unusually full agenda and insufficient time was accorded to the agenda topic, Postviral and related fatigue syndromes, which wasn't reached until the afternoon of Day 2.

*Dr Erica Remer is a physician and educator from the coding industry - not a rep for the NCHS.

**There are usually two and sometimes three or four NCHS and CDC reps who present NCHS proposals at these meetings but who also present on behalf of clinicians, professional bodies, coding industry reps, advocates and other parties who are unable to attend a meeting in person to present their own submissions, but who may contribute to discussions via phone link.

On this occasion, the meeting was held via Zoom and as far as I could tell, having listened to most of Day 1 and Day 2 up to the topic: Postviral and related fatigue syndromes, Donna Picket did not present any proposals but was present at the virtual meeting to read out the housekeeping notes.

 

https://twitter.com/user/status/1443112720082128896

 

I was involved in writing his blog and it is based on input from multiple sources. I will be working with others at ME International to submit comments regarding concerns about the proposal.

I think a point that is being missed is that many of us have worked very hard to get the G93.3 code into our records as recommended by the IC Primer. My understanding during the roll out of the ME/CFS (SEID) criteria in 2015 was that it was meant to be a big net capturing as many patients as possible which would lead to more thorough screening to diagnose ME. (Using either the CCC or ICC criteria). Somewhere along the way the CDC morphed that into "the disease" and now we have moved to the point of giving it a code?

One of the most important aspects of diagnosis coding, IMO, is for research. I don't understand how putting all these various patient groups into one code will lead to quality research. Imagine a researcher trying to duplicate ME ICC research using CFS Fukuda or ME/CFS-SEID definition for patient selection. I think the work that has been done to stratify patients would be lost if this goes through.

I also recognize that CFS and ME don't have separate codes in other countries. But I also know that the power of the CDC toolkit that led to the complete misrepresentation of ME patients may not be the same in other countries. There is a good reason for the US to have separated CFS from ME in the ICD-10-CM coding.

In most cases it falls to the patients to educate their doctors in the US. Many of us are using the ME IC Primer to make sure our doctors have a full grasp of the reality of ME. The explanation of why the experts chose to approach ME as they did is clearly laid out on page ii & iv of the ME ICPrimer. I urge anyone who is trying to understand the viewpoint of those of us advocating for ME as a distinct disease look there. https://www.me-international.org/uploads/1/2/7/6/127602984/me_icprimer_2012.pdf

 

An update on the release of ICPC-3 (International Classification of Primary Care - 3rd Revision)

"The ICPC is a WHO endorsed international standard for systematically capturing and organising clinical information in primary care. It is developed and revised by the ICPC-3 Consortium and the World Organization of Family Doctors’ (WONCA) International Classification Committee (WICC). A new version ICPC-3 has been adopted by WONCA in December 2020 and endorsed on April 16, 2021 during the WONCA Executive meeting.

"ICPC is formally recognised by the World Health Organization’s (WHO) Family of International Classifications (WHO-FIC) as a classification for primary care. The new ICPC-3 is already used by the WHO - Primary Health Care department in the context of the Universal Health Care (UHC) Compendium as a structuring Framework and is linked to the WHO International Classifications."

ICPC is used in primary care settings in around 27 countries and is the mandatory standard in 6 countries, including the Netherlands. Denmark has developed a national extension with additional sub-codes and content.

"ICPC-2 PLUS (also known as the BEACH coding system) is a clinical terminology classified to the International Classification of Primary Care, Version 2 (ICPC-2). Primarily used in Australia, ICPC-2 PLUS is installed in various software packages and used in electronic health record (EHR) systems by approximately 6,000 GPs in more than 500 practices throughout Australia.

"It is also used in research projects, including the BEACH (Bettering the Evaluation And Care of Health) program, the national study of general practice activity. The terminology is therefore often referred to as the BEACH coding system." [1]

Note the Australian ICPC-2 derivative classification has these codes:



1 University of Sidney: https://www.sydney.edu.au/medicine-...ifications-and-terminologies/icpc-2-plus.html


The landing page for ICPC-3 information is here: https://www.icpc-3.info

Browser:

The primary use of the ICPC-3 is intended in electronic format, which is available for free in the ICPC-3 Browser.

The ICPC-3 Browser is here: https://browser.icpc-3.info


In ICPC-2, Chronic fatigue syndrome has used the A04 General weakness or tiredness code. For ICPC-3, Chronic fatigue syndrome is listed as an Inclusion under new code AS05 Postviral fatigue [sic], and is assigned new sub-code AS05.00.

The Index terms are chronic fatigue syndrome; myalgic encephalomyelitis.

There is an Exclusion under AS05 and AS05.00 for AS04 weakness/tiredness, general - so that is an improvement, although the terms remain under the AS General symptoms, complaints and abnormal findings block. The continued use of the AS location needs addressing but I will not be taking this on, myself, as I am supposed to be retired.

In the Browser there is a Description text for Postviral fatigue [sic] and a text for Chronic fatigue syndrome. These Description texts urgently need scrutiny and proposals for improvement submitting, but again, I will not be taking this on.

The ICPC-3 code maps to codes in ICPC-1; ICPC-2; ICD-10; ICD-11 and SNOMED CT are given.


For ICPC-3, ICPC-2's P75 Somatisation disorder is replaced with PD10 Bodily distress or somatisation disorder.

The Description text has been adopted verbatim from the Description text for ICD-11's 6C20 Bodily distress disorder.

The Inclusion term is somatization disorder. The Index terms are: bodily distress disorder; conversion disorder; pseudocyesis; somatic symptom [sic]; somatoform disorder.

The ICPC-3 code maps to the codes in ICPC-1; ICPC-2; ICD-10; ICD-11 and SNOMED CT are given. PD10 Bodily distress or somatisation disorder is mapped to ICD-11's 6C20 Bodily distress disorder.

There are no Exclusion terms under P10 Bodily distress or somatisation disorder.

I have submitted for exclusions under P10 for AS05 Postviral fatigue; AS05.00 chronic fatigue syndrome; and myalgic encephalomyelitis to help mitigate the risk of misdiagnosis with Bodily distress disorder or misapplication of an additional diagnosis of Bodily distress disorder in children and adults; and for consistency with the exclusions for these terms in ICD-11.

The ICPC-3 code mapping to the codes in ICPC-1; ICPC-2; ICD-10; ICD-11 and SNOMED CT are given.


In June I submitted for some limited improvements which I have set out in an earlier post. I was told by the lead developer, in June, that the deadline for incorporation of approved submissions for changes to the current release of ICPC-3 had already been reached but public stakeholder requests for changes and improvements can be submitted at any time for consideration for the next annual update.

There was a bug in the proposal platform resulting in an impractically restrictive character count limit for submitting text for proposals for changes, rationales and references. I brought this to the attention of the developers and a substantial increase in the number of characters that can be submitted for proposals was promptly implemented.


ICPC-3 Book version

ICPC-3 will be published in paper format and as an eBook. Both version will be less detailed than the electronic format, but will contain a Manual on how to use the ICPC-3 and a representative part of the ICPC-3 Classification for daily desk use.

The print edition of the ICPC-3 User Manual and Classification is now available for pre-order from Routledge in paperback and hardback editions:

3rd Edition
ICPC-3 International Classification of Primary Care
User Manual and Classification
Edited By Kees van Boven, Huib Ten Napel
Copyright Year 2022

https://www.routledge.com/ICPC-3-In...assification/Boven-Napel/p/book/9781032053394

Orders will ship after December 15, 2021.

Table of Contents

1. Introduction.
2. Basic principles, how the ICPC -3 is built.
3. The Primary Care Use case.
4. Description, Inclusion / Exclusion / Description / Cross-references.
5. Episodes of Care.
6. Standard for use of reason for encounter.
7. Standard for use of the health problem / diagnosis.
8. Standard for use of Functioning and Functioning Related.
9. Standard for use of Interventions / Processes of care.
10. Standard for use of Regional extensions and Extension codes.
11. Desk version, Update platform and updates, Translations, Policy on copyright and licensing of ICPC-3.
12. Tabular list of ICPC-3 classes.
13. Conversion from ICPC-3 to ICPC-2 and ICPC-1.
Annex 1 Primary Care Functioning Scale (PCF). Index.


Desk version

A desk version is available for print. The desk version consists of 6 pages in A4 format and lists the codes only.

You can download the Desk version here: https://flyer.icpc-3.info

Unofficial PDF here: https://dxrevisionwatch.files.wordpress.com/2021/10/icpc-3-flyer.pdf


Extracts from Desk version:

AS General symptoms, complaints and abnormal findings




PD Psychological, mental and neurodevelopmental diagnoses and diseases




It's not known how soon those countries currently using ICPC-2, including the 6 countries for which use of ICPC-2 is mandatory for general practice settings, will adopt the third revision or how long it will take them to prepare their health systems for implementation of ICPC-3.


Earlier posts on completion of ICPC-3:

Post #465
https://www.s4me.info/threads/updat...-terminology-systems.3912/page-24#post-351597

Post #466
https://www.s4me.info/threads/updat...-terminology-systems.3912/page-24#post-351604

Post #472
https://www.s4me.info/threads/updat...-terminology-systems.3912/page-24#post-353022