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

Preparing for implementation of ICD-11 in NHS England:

https://digital.nhs.uk/about-nhs-di...preparations-for-the-implementation-of-icd-11


NHS Digital News

For information: Preparations for the implementation of ICD-11
26 January 2023:

Find out how to prepare for the next revision of the International Classifications of Diseases (ICD), ICD-11.
The next revision of the International Classifications of Diseases (ICD), ICD-11, is now approved by the WHO and will be mandated for use in the future. Our assumption is that ICD-11 will not be mandated for use across the NHS in England before April 2026, but to prepare for the changes, we are currently running an ICD-11 pre-implementation project to create a high-level implementation plan, which we aim to have ready in April 2023.

Find out more about our preparations for implementing ICD-11, as well as useful resources such as e-learning modules, ICD-11 API and coding tools, use cases and more. New content is being added continuously and we will also be scheduling interactive sessions with stakeholder groups over the coming months.

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More information on NHS England's preparation for adoption of ICD-11 here: https://nhsengland.kahootz.com/t_c_home/view?objectID=36254864


ICD-11 Pre-implementation overview presentation: https://nhsengland.kahootz.com/gf2..../PDF/-/ICD-11 Pre-Implementation Overview.pdf

 

https://twitter.com/user/status/1626164192221831171


https://twitter.com/user/status/1626167588999819265

 

@Dx Revision Watch
You and I had submitted a proposal for ME and CFS in ICD-11 without first consulting with the community on what we were proposing. Once it was submitted, the community could see our proposal and make comments on it.

How is this different from what we did then, given that NCHS has a process for proposals to be presented publicly followed by a period of public comment?

 

Response from Lisa McCorkell:

https://twitter.com/user/status/1626321816561262592

 

The situations are not comparable.

You and I submitted that proposal to ICD-11 in March 2017 as individuals, ie not representing specific patients groups. The proposal was prefaced by this Declaration:

Declarations: This submission has been prepared by Mary Dimmock and Suzy Chapman. Mary Dimmock serves on the Board of Solve ME/CFS Initiative and also works with other ME organizations. Suzy Chapman has no affiliations. This proposal has been submitted in personal capacities and not on behalf of any organizations. The authors declare no conflicts of interest.​

This June 2022 proposal to NCHS/CDC has been submitted on behalf of five ME/CFS groups:

#MEAction;
Open Medicine Foundation;
Solve ME/CFS Initiative;
Massachusetts ME/CFS & FM Association;
PandoraOrg

who have memberships, who seemingly were not consulted or informed about this proposal, nor kept up to speed on at least two changes to the proposal, as it had stood last June.

[Minor edit for clarity]

 

In the preface to ICD-10-CM's Chapter 6: Diseases of the nervous system (G00-G99) there is a list of "Excludes2" for, among others, the code block:

"symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R94)"

This seems to be the case for most of the ICD-10-CM body system chapters.


An Excludes2 is defined as follows:

"Excludes2
"A type 2 excludes note represents 'Not included here'. An excludes2 note indicates that the condition excluded is not part of the condition it is excluded from but a patient may have both conditions at the same time. When an Excludes2 note appears under a code it is acceptable to use both the code and the excluded code together."​

Extract from preface to the Symptoms, signs chapter:

This chapter contains the following blocks:
R00-R09 Symptoms and signs involving the circulatory and respiratory systems
R10-R19 Symptoms and signs involving the digestive system and abdomen
R20-R23 Symptoms and signs involving the skin and subcutaneous tissue
R25-R29 Symptoms and signs involving the nervous and musculoskeletal systems
R30-R39 Symptoms and signs involving the genitourinary system
R40-R46 Symptoms and signs involving cognition, perception, emotional state and behavior
R47-R49 Symptoms and signs involving speech and voice
R50-R69 General symptoms and signs
R70-R79 Abnormal findings on examination of blood, without diagnosis
R80-R82 Abnormal findings on examination of urine, without diagnosis
R83-R89 Abnormal findings on examination of other body fluids, substances and tissues, without diagnosis
R90-R94 Abnormal findings on diagnostic imaging and in function studies, without diagnosis
R97 Abnormal tumor markers
R99 Ill-defined and unknown cause of mortality​

It is being proposed that a code for PEM is added to the section: R50-R69 General symptoms and signs under a new code "R68.A" (was previously proposed as "R68.4").

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

"Excludes2
"A type 2 excludes note represents 'Not included here'. An excludes2 note indicates that the condition excluded is not part of the condition it is excluded from but a patient may have both conditions at the same time. When an Excludes2 note appears under a code it is acceptable to use both the code and the excluded code together."
​

This definition might suggest that if the code block "symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R94)" is a type 2 excludes to code block (G00-G99) that if a code for "Post-exertional malaise" were added to code block (R00-R94), the type 2 exclude would indicate that the R coded condition [PEM] is not part of the condition it is excluded from but that a patient may have both conditions at the same time and it would be acceptable to use both the condition code and the exclude type 2 code together.

I am not a coder and I am not qualified to interpret the exclude type 2 definition and how it is applied in practice. But I am concerned for the potential implications for creation of a unique R code for "Post-exertional malaise" in the context of the existing G93.32 diagnosis code.

My concern is that by putting PEM in the R codes and not under a G code sub-code, this might potentially define "PEM" as a general symptom that could potentially be coded for alongside ME/CFS (or any other disease or disorder) but which does not form part of the condition - depending on how the Excludes2 definition is being interpreted, in practice, by clinicians and coders.

I would hope that this is something the six groups requesting this addition have already considered and that it has been discussed with the CDC.


For comparison, this is a September 2021 rationale for requesting additional codes for capturing a symptom of Parkinson Disease.

The proposed changes included delineating between individuals with and without dyskinesia. But in this request, the submitters had asked for new sub-codes to be located within the Neurology Chapter - as G codes - not added to the Symptoms, signs chapter R codes:

https://practicalneurology.com/articles/2021-sept/parkinson-disease-iicd-10-cmi-coding


[Edited to insert additional text]

 

This proposal does not include an explicit excludes2 between PEM and G93.32. And it would be wrong for such an excludes to be established in the future specifically because PEM is by definition a core part of ME and can't be excluded from it. Of course, mistakes can be made but it seems extremely unlikely that such an error would get through. (Or if the thought is that this implies an implicit excludes2 that excludes PEM from an ME diagnosis, that would have to also imply that cognitive impairment is not part of ME since there's already an R code for that. And that's not the case)

Today, it's well established that a substantial number of people with Long COVID are experiencing PEM. But that doesn't mean they all qualify for an ME diagnosis, either because of the time criteria or for some other reason. But PEM is still an important symptom for doctors to be aware of, especially given the need for exercise cautions in those who experience PEM. This proposal enables PEM to be explicitly noted, communicated, and tracked as a symptom in the medical records of those cases. That's a critical need.

If I understand the suggestion above about creating a G93.32 subcategory that includes "with PEM" - that would be unacceptable because it would imply that some G93.32 cases do not have PEM. Incorrect as PEM is always required. And it would not solve the problem anyway because this proposal is for Long COVID people who do not have - or at least yet have - an ME diagnosis. If I'm misunderstanding the suggestion, let me know.

 

So the difference is that organizations with members submitted this proposal, not two individuals. Is this what all organizations do? Not take any action until they have first put it out to all members for consultation and a vote?

 

To clarify, I have not suggested nor implied that the proposal calls or should call for an "explicit excludes2 between PEM and G93.32."

I am pointing out that if you look at the preface to Chapter 6: Diseases of the nervous system (G00-G99) there is a list of "Excludes2" which includes the code block:

"symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R94)"

This appears to be the case for most of the body system chapters.



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"...because it would imply that some G93.32 cases do not have PEM"

Do all cases of chronic fatigue syndrome, which is also coded under G93.32, feature PEM?

 

I'm not going to spend time arguing the toss about this.

 

The move of CFS to G93.32 as of October 1st 2022 ICD-10-CM Codes formalises the position of the IOM 2015 diagnostic criteria in the G93.32 coding as defined by the CDC IOM 2015 Diagnostic Criteria . I've no idea if this was intentional or serendipitous to the coding change but I think that in coding and criteria terms the answer to your question, as of last October, is 'Yes'.

 

The only definition used in the US that did not require PEM was Fukuda. But the IOM called for Fukuda to no longer be used clinically and since 2017, the IOM criteria has been adopted and incorporated widely into clinical medical education in the US. There is no separate clinical criteria or medical education for CFS in the US and when the term "chronic fatigue syndrome" is used in medical education, it's used in conjunction with the IOM criteria and/or else referenced as either the synonym or previous name for ME/CFS.

So yes, PEM is required for all cases coded as G93.32.

 

Extracts from the FY 2023 ICD-10-CM Guidelines:

"Chapter 18: Symptoms, signs, and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99)

"Chapter 18 includes symptoms, signs, abnormal results of clinical or other investigative procedures, and ill-defined conditions regarding which no diagnosis classifiable elsewhere is recorded.

Signs and symptoms that point to a specific diagnosis have been assigned to a category in other chapters of the classification.

a. Use of symptom codes
Codes that describe symptoms and signs are acceptable for reporting purposes when a related definitive diagnosis has not been established (confirmed) by the provider.

b. Use of a symptom code with a definitive diagnosis code
Codes for signs and symptoms may be reported in addition to a related definitive diagnosis when the sign or symptom is not routinely associated with that diagnosis, such as the various signs and symptoms associated with complex syndromes. The definitive diagnosis code should be sequenced before the symptom code. ​

Signs or symptoms that are associated routinely with a disease process should not be assigned as additional codes, unless otherwise instructed by the classification.​

 

Yes, I've read that. These statements align with the proposal.

People with Long COVID can have the symptom of PEM but not have a diagnosis of ME/CFS. So the PEM symptom code can be - and I'd say should be - used in their medical record

And PEM is a core part of ME/CFS so PEM should not be assigned as an additional code in their medical record. I'd expect this to be the same with other core symptoms - e.g. sleep dysfunction is also a required symptom.

Adding PEM as a symptom code does not remove PEM from an ME/CFS diagnosis. If anything, it highlights the symptom as a critical symptom for doctors to pay attention to.

 

I'm just trying to understand the logic of the proposals - I can't grasp why R68 is the preferred location, your example 'sleep dysfunction' doesn't appear in the R68 et seq, but is located at G47 et seq, and would seem to follow the Exclude 2 instruction for R68 "Signs and symptoms classified in the body system chapters" ?

Surely the place for PEM Post COVID would be in the sequence ICD-10-CM code (U09.9, “Post COVID-19 condition, unspecified” where it would either precede or follow 'unspecified' ? Coding long COVID: characterizing a new disease through an ICD-10 lens

ICD -- CM doesn't affect me personally but I think non USAians have a right to some concerns about the knock on impacts of having PEM defined as a non disease specific (ME/CFS or PASC) entity. We've already seen how now everyone has 'brain fog', with the consequence of reducing seriousness of the term when used by PwME, having PEM as non disease specific might mean we see semantic degradation of that term as well, at least in medical circles.

 

I apologize for the length of this post. Hopefully it responds to your concerns but let me know if not.

You are correct, sleep issues are not in the symptom chapter. My mistake. They are listed in the “Factors influencing health status and contact with health services” or the nervous system chapters. The better example is cognitive problems, which includes codes in the Symptoms and Signs chapter in a section called “Symptoms and signs involving cognition, perception, emotional state and behavior (R40-46).”

Regarding placing the symptom of PEM under Post COVID-19 Condition code (U09.9)

U09.9 is an umbrella code intended to establish the link to a COVID-19 infection. But there are many different symptoms or diagnoses that could be associated with or sequalae to a COVID-19 infection. The ICD-10-CM does not establish separate subcategories under U09.9 for all these different symptoms and conditions. Instead, coders are told to code the U09.9 code and separately code these associated conditions. Two examples given in the ICD-10-CM instructions for this are to code e.g. loss of smell (code R43.8) and pulmonary embolism (codeI26.-) in addition to U09.9 when these exist.

The other issue with placing PEM under U09.9 is that it wouldn’t work for those patients who have PEM, have never had a COVID-19 infection and who don’t yet meet criteria for ME. They would not qualify for a subcode under U09.9 but no other code could be used to capture their PEM.
​

Regarding why the R68 location:

As above, it can’t go under the U09.9 code and the G93.32 code is not appropriate for people who have PEM but not yet an ME/CFS diagnosis. Much of the ICD is structured into body systems and PEM is not specific to a given body system so it can’t go in those. So that leaves the Symptoms and Signs chapter (R00-R99) which includes codes associated with specific body systems and also “General Symptoms and Signs” category. In that, is the “Other general symptoms and signs” section (R69.n)
​

Regarding the Exclude2 instruction

DX Revision Watch noted the neurological chapter has an Excludes2 for “Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified” and also said that this appears to be the case for most of the ICD body chapters.

Excludes2 is defined as indicating “the condition excluded is not part of the condition it is excluded from.”

But as noted above, cognitive problems are included in the Symptoms and Signs chapter and also a key part of the ME diagnosis. Examples of other symptoms in the symptom chapter include palpitations, enlarged lymph nodes, cough, breathing abnormalities, chronic fatigue, pain, ataxia, fever, sepsis, etc. A number of the symptoms in that chapter could be a key part of any number of conditions listed in the neurological chapter or one of the other body system chapters. So this note can’t be a blanket exclusion of every single symptom in the Symptoms and Signs chapter from every single condition listed in the neurological chapter or these other body system chapters.

What the ICD rules does state, as noted above in posts 653 and 654, is that symptoms from this chapter that are part of the diagnosis should not be coded separately unless no specific diagnosis can be assigned

- “Signs or symptoms that are associated routinely with a disease process should not be assigned as additional codes"
- "Codes that describe symptoms and signs are acceptable for reporting purposes when a related definitive diagnosis has not been established"​

This means that symptoms of sleep problems, chronic fatigue, functional impairment, PEM, and cognitive problems are not coded when a diagnosis of ME is coded because they are part of the disease. But they could be coded if a specific diagnosis cannot be made, as in the case of Long COVID people who have PEM or cognitive impairment but not yet a specific diagnosis.​

​

 

Thank you for the comprehensive response. I hadn't understood that U09.9 was effectively closed as a sequence. On that basis I guess my question is why R69.n and not R53n with a new numbering for Post-exertional malaise ? Is it likely that the ICD coders would accept 'malaise' appearing at R69.n without a corresponding R53n entry ?

I do think that an argument based on "placing PEM under U09.9 is that it wouldn’t work for those patients who have PEM, have never had a COVID-19 infection and who don’t yet meet criteria for ME" is a potential 'slippery slope' - it sets PEM as disease non specific, so anyone might have PEM regardless of whether they have ME/CFS. This may be an appropriate development, but as an orphan Symptom and Sign it would be open to, for example being identified as 'PEM FND' with an argument for that to be located ICD-10-CM Diagnosis Code F44.4 - as @Dx Revision Watch said above "ICD-10-CM Symptoms, signs chapter could be a positive development for ME/CFS patients or could potentially result in unintended consequences."

 

The items in the R53 section are fairly narrow conceptually - malaise, fatigue, malignancy related fatigue, weakness, and functional quadriplegia. IMO, PEM doesn't fit in with this group of symptoms.

 

The full agenda (aka "Topic Packet") is now available for the March 7-8 ICD-10-CM CDC/NCHS Coordination and Maintenance Committee Meeting from this page:

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

Download Topic Packet here: https://www.cdc.gov/nchs/data/icd/Topic-packet-March-7-8-final-3-2-23.pdf


Diagnosis Code topic:

Post-exertional malaise/post-exertional symptom exacerbation rationale and proposed code structure

is set out on Pages 107 to 109.

The Presenters are:
Traci Ramirez (CDC/NCHS)
Lisa McCorkell, MPP (Co-Founder of Patient-Led Research Collaborative)


April 7, 2023 is the Deadline for receipt of public comments on proposed new codes and revisions discussed at the March 7-8 Meeting being considered for implementation on October 1, 2023.

May 5, 2023 is the Deadline for receipt of public comments on proposed new diagnosis codes and revisions discussed at the March 7-8 Meeting being considered for implementation on October 1, 2024.

Please check with Presenter, Lisa McCorkell, for the Deadline date for receipt of public comments on this specific topic.



Recordings and slide presentations of the March 7-8 Meeting for Diagnosis codes will be posted on the following web page:
https://www.cdc.gov/nchs/icd/icd10cm_maintenance.htm

Comments on the diagnosis proposals presented at the ICD-10 Coordination and Maintenance Committee meeting should be sent to the following email address:

nchsicd10CM@cdc.gov


To register for the virtual meeting go to: https://www.cdc.gov/nchs/icd/icd10cm_maintenance.htm

Use this link to register:
https://cms.zoomgov.com/webinar/register/WN__piUmNYaRjmkcYczb3ePIQ

Meeting ID: 160 600 6403
Passcode: 357110

After registering, you will receive a confirmation email containing information about joining the webinar.

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Gulf War Illness on Page 73 of the Topic Packet.


Sometimes the Diagnosis Code topics are discussed on Day Two. On occasions, if the Procedure Codes Agenda is a short one, the Diagnosis Codes section of the meeting (which for March, is a very full agenda) will start on Day One, in the afternoon, following completion of the Procedure Codes presentations.

Please check with the presenter on which day the Diagnosis Codes are expected to be started at this meeting.

The meeting runs from 9:00am to 5:00pm Eastern Time, next week, on Tuesday 7 and Wednesday 8, March.