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

It is common practice in ICD to leave coding gaps before the code XXX.8 Other xxxx xxxxx xxxxx or XXX.9 Xxxx xxxxx, unspecified.

For example, here the codes jump from E24.4 to E24.8; E24.9.

The ICD XXX.8 and XXX.9 codes are often reserved for "Other xxxxxx" and "Xxxxxx, unspecified":

E24 Cushing's syndrome
Excludes1: congenital adrenal hyperplasia (E25.0)

E24.0 Pituitary-dependent Cushing's disease
Overproduction of pituitary ACTH
Pituitary-dependent hypercorticalism

E24.1 Nelson's syndrome
E24.2 Drug-induced Cushing's syndrome
Use additional code for adverse effect, if applicable, to identify drug (T36-T50 with fifth or sixth character 5)
E24.3 Ectopic ACTH syndrome
E24.4 Alcohol-induced pseudo-Cushing's syndrome
E24.8 Other Cushing's syndrome
E24.9 Cushing's syndrome, unspecified


NCHS/CDC did not discuss at the meeting what categories might be included under

G93.39 Other post infection and related fatigue syndromes

but codes for "Other xxxxxxx" and "Xxxxxxxx, unspecified" are commonly included for many diseases and disorders.


https://ftp.cdc.gov/pub/Health_Stat.../ICD10CM/2023/ICD-10-CM-Guidelines-FY2023.pdf

ICD-10-CM Guidelines:

9. Other and Unspecified codes

a. “Other” codes
Codes titled “other” or “other specified” are for use when the information in the medical record provides detail for which a specific code does not exist. Alphabetic Index entries with NEC in the line designate “other” codes in the Tabular List. These Alphabetic Index entries represent specific disease entities for which no specific code exists, so the term is included within an “other” code.

b. “Unspecified” codes
Codes titled “unspecified” are for use when the information in the medical record is insufficient to assign a more specific code. For those categories for which an unspecified code is not provided, the “other specified” code may represent both other and unspecified.

See Section I.B.18. Use of Signs/Symptom/Unspecified Codes

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

In ICD-11, the equivalent are the "Y" and "Z" codes:

For example:

8E0Y Other specified human prion diseases
8E0Z Human prion diseases, unspecified

and

8A4Y Other specified multiple sclerosis or other white matter disorders
8A4Z Multiple sclerosis or other white matter disorders, unspecified

These "Y" and "Z" categories are known as "Residuals" and they appear in ICD-11 in red/brown coloured font.


ICD-11 Reference Guide:

https://icdcdn.who.int/icd11referen...tml#residual-categories-other-and-unspecified

2.7.5 Residual categories – ‘Other’ and ‘Unspecified’

ICD-11 coding should always be completed to include the most specific level of detail possible with the use of one code or multiple codes as described above. There are, however, circumstances when that is not possible and for that reason the ICD-11 includes categories titled ‘other’ and ‘unspecified’. In some instances, necessary information to select a specific category may not be available in the source documentation. When this is the case, the residual category ‘unspecified’ is selected. Conversely, there are instances where the information in the source documentation is very specific, but the tabular list does not include a specific category. In this case, users identify the closest category match, and code to the residual category titled ‘other’.

 

Thanks!

 

Sorry if this has been covered already.

An Advocacy Victory: New ICD-10 Code for POTS!

"Exciting news! Dysautonomia International successfully advocated for a unique ICD-10 code for POTS in the US for the first time! US clinicians can begin using the new POTS code, G90.A, as of October 1, 2022 – just in time for our 10th Annual Dysautonomia Awareness Month campaign.

The International Classification of Diseases (ICD) is an agreed upon terminology for medical conditions created by the World Health Organization, a branch of the United Nations. Each country can choose to adopt the ICD, and make some edits to the terminology to be used in their country. ICD-10 is the current version and the 10th revision of the ICD since its inception in 1909.

POTS historically did not have its own unique ICD-10 code. It was listed as a synonym under I49.8 “Other specified cardiac arrhythmias” along with numerous other medical conditions like Brugada syndrome, re-entrant atrioventricular tachycardia, ectopic rhythm disorder and other arrhythmias. POTS, however, is not considered to be an arrhythmia. The tachycardia (fast heart beat) seen in POTS is a normal sinus rhythm. POTS being lumped together with so many other medical conditions made epidemiology, health care utilization, and other electronic medical records research impossible.

This is why Dysautonomia International set out to get POTS its own diagnostic code in the ICD a few years ago. Dysautonomia International Medical Advisory Board member Dr. Jeffrey Boris led the charge, along with Dysautonomia International President Lauren Stiles."

https://dysautonomiainternational.org/blog/wordpress/an-advocacy-victory-new-icd-10-code-for-pots/

 

A code for Postural orthostatic tachycardia syndrome has also been included in the WHO's ICD-11, under

8D89 Disorders of orthostatic tolerance
8D89.2 Postural orthostatic tachycardia syndrome

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


My understanding is that the proposal approved for ICD-11 had also been submitted by Dysautonomia International.

The ICD-11 listing does not include the acronym "POTS".

The convention for handling acronyms in ICD-11:

“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.” Source: ICD-11 Content Model

For example, acronyms in ICD-11 do not appear as, or prefixed by, code titles but are listed under synonyms to their respective code titles, using this format:

ARC - [aids-related complex]
COPD - [chronic obstructive pulmonary disease]
SIDS - [sudden infant death syndrome]
CFS - [chronic fatigue syndrome]
ME - [myalgic encephalomyelitis]​

Postural orthostatic tachycardia syndrome cannot be proposed to be added to the WHO's international version of ICD-10 as the release for 2019 (published 2020) is the final update in the life of ICD-10. The WHO has said that only correction of errors and typos and the addition of notable viruses can now be incorporated.

 

I assume that as the changes proposed by NCHS/CDC in September 2021 (pending corrected) were approved and incorporated into the FY 2023 ICD-10-CM release, that NCHS/CDC will now be requesting reciprocal changes to the next release of the United States edition of SNOMED-CT for congruency with the FY 2023 ICD-10-CM release.

At the moment, the US edition of SNOMED CT maps Concept term: SCTID: 52702003 Chronic fatigue syndrome to a choice of either ICD-10-CM R53.82 or G93.3.

SNOMED CT already includes the following discretely coded for SCTID Concept term and Synonyms terms:

SCTID: 52702003 | Chronic fatigue syndrome (disorder) |
en Chronic fatigue syndrome (disorder)
en Chronic fatigue syndrome
en Benign myalgic encephalomyelitis
en CFS - Chronic fatigue syndrome
en Iceland disease
en ME - Myalgic encephalomyelitis
en Myalgic encephalomyelitis
en Myalgic encephalomyelitis syndrome


I doubt that SNOMED International terminology experts would consider adding the following to SNOMED CT under Synonyms under SCTID: 52702003 | Chronic fatigue syndrome (disorder) for correspondence with ICD-10-CM:

Myalgic encephalomyelitis/chronic fatigue syndrome
ME/CFS

(or as "ME/CFS" - Myalgic encephalomyelitis/chronic fatigue syndrome" as that is the SNOMED CT convention for the listing of acronyms), because the terms are historically listed as separate entities and because the convention for SNOMED CT entities is for unique, machine readable terms.

A request submitted in 2020 via NHS England's Digital submission portal to add SEID to the International Edition of SNOMED CT was rejected by SNOMED International in June 2020.

 

I've had a third go at setting out this apparent error for Ms Ramirez. I'll post any response/resolution I receive.

 

Suzy - I've heard back from Ms Ramirez that the Excludes1 on G93.3 will be "chronic fatigue, unspecified (R53.82)." The current listing was in error as you noted. This will be listed in the addenda in September.

Thank you for pursuing this. And thank you for the reminder on Snomed.

 

I'm pleased to hear this error has now been acknowledged and will be amended in September.

 

A proposal for adding the term, "Postural orthostatic tachycardia syndrome" to ICD-11 had already been approved and implemented by WHO and is listed in both the "Blue ICD-11 MMS Linearization Browser" and the Orange ICD-11 Maintenance Browser: https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/1533647472

Last year, I suggested to Dysautonomia International that they further request a Content Enhancement for the addition of the acronym "POTS" to ICD-11. I was advised that they would do this. As no proposal appears to have been submitted via the Proposal Mechanism, I have requested today that the acronym "POTS" is added under Synonyms or Index terms using the ICD-11 convention for acronyms, which is:

POTS - [postural orthostatic tachycardia syndrome]

Those who are registered with the ICD-11 Orange Maintenance platform for increased access to features can find my proposal here: https://icd.who.int/dev11/proposals...lGroupId=bd7ba647-f48e-4252-baaf-07baf9539de7

The brief Rationale I have submitted in support of the addition of the acronym is:

https://icd.who.int/dev11/proposals...lGroupId=bd7ba647-f48e-4252-baaf-07baf9539de7

Rationale

At the NCHS/CDC ICD-10-CM Coordination and Maintenance Committee Meeting September 14-15, 2021, a proposal to add the term "Postural orthostatic tachycardia syndrome (POTS)" was submitted by David Berglund, MD and Jeffrey R. Boris, MD FACC FAAP, Pediatric Cardiologist Medical Advisory Board, Dysautonomia International [1].

This proposal was approved by the NCHS Director and the term "Postural orthostatic tachycardia syndrome (POTS)" has been added to the ICD-10-CM FY 2023 release [2].

A proposal to add the term "Postural orthostatic tachycardia syndrome" to ICD-11 has already been approved and implemented by WHO.

This Content Enhancement proposal is to add the acronym "POTS" in the format

POTS - [postural orthostatic tachycardia syndrome]

under Synonyms or Index terms under "8D89.2 Postural orthostatic tachycardia syndrome".

References:

1 ICD-10-CM Coordination and Maintenance Committee Meeting September 14-15, 2021. Rationale in support of request for addition, Topic Packet pages 167-168: https://www.cdc.gov/nchs/icd/Sept2021-TopicPacket.pdf

ICD-10-CM Coordination and Maintenance Committee Meeting September 14-15, 2021. Presentation slides: https://dxrevisionwatch.files.wordpress.com/2021/09/postural-orthostatic-tachycardia-syndrome.pdf

2 ICD-10-CM FY 2023 Addenda: https://ftp.cdc.gov/pub/Health_Statistics/NCHS/Publications/ICD10CM/2023/​

 

Yesterday, I submitted a proposal to ICD-11 for addition of the acronym "POTS", in the ICD-11 acronym convention format:

POTS - [postural orthostatic tachycardia syndrome]​

under Synonyms or Index terms under existing ICD-11 term: "8D89.2 Postural orthostatic tachycardia syndrome".

See Post #609.

This proposal has been reviewed and marked as "Implemented" today, by Team 7 WHO:

Proposal Mechanism:

https://icd.who.int/dev11/proposals...lGroupId=bd7ba647-f48e-4252-baaf-07baf9539de7






The Orange Maintenance platform is usually updated overnight every day or two with the most recently approved changes and additions. The addition of the acronym "POTS" (as POTS - [postural orthostatic tachycardia syndrome]) should be incorporated into the Linearizations within the next few days and will be subsequently incorporated into the Blue Implementation release of ICD-11 Mortality and Morbidity Statistics, for its next annual update.

 

The Orange Maintenance browser has now been updated to incorporate the approved addition of the acronym "POTS" under Synonyms to 8D89.2 Postural orthostatic tachycardia syndrome:

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

 

Fibromyalgia and ICD-11 coding - Editorial, published June 2022

As I've mentioned several times before in this thread, the relocation of FM to the Symptoms, signs chapter was effected in the ICD-11 Beta draft in May 2015 without proposals to do so having first been submitted via the ICD-11 Beta draft Proposal Platform for clinical and public scrutiny and comment.

A number of advocates associated with FM patients groups were alerted to this change of chapter location several years ago and were more recently advised via Twitter threads how to submit patient org comments to the Proposal Platform. None of them appeared to have taken this forward.

[Paragraphs inserted for ease of reading]


June 202

Clinical and Experimental Rheumatology 40(6)

Editorial

Concerns about the taxonomy, definition and codingof fibromyalgia syndrome in ICD-11: the potentialfor negative consequences for patient care and research

W. Häuser1, D.J. Clauw2, F. Wolfe3, P. Sarzi-Puttini4, J.N. Ablin5, C. Usui6,G.O. Littlejohn7, B. Morlion8, E. Kosek9,10, E.A. Fors11, K.M. Øien Forseth12,M.-A. Fitzcharles13,14

DOI: http://dx.doi.org/10.55563/clinexprheumatol/3bt9qx


Full text available for free from:

Abstract: https://www.clinexprheumatol.org/abstract.asp?a=18721
PDF: https://www.clinexprheumatol.org/article.asp?a=18721

International Statistical Classification of Diseases and Related Health Problems (ICD) codes of the World Health Organisation (WHO) are currently used by about 27 countries worldwide, primarily for reimbursement and resource allocation, but have become an important source of health care services research. The current ICD-10 was replaced by ICD-11 on January 1, 2022. An important change introduced in the ICD-11 is the systematic classification of clinical conditions associated with chronic pain (1), as proposed by an interdisciplinary working group of the International Association of the Study of Pain (IASP) and the WHO (2, 3).

Fibromyalgia syndrome (FMS) was relocated from its legacy ICD-10 chapter location (diseases of the musculoskeletal system and connective tissue) to the new category block in the chapter “Symptoms, signs or clinical findings, not elsewhere classified”, as an inclusion term under Chronic primary pain > Chronic widespread pain (CWP).

This working group did not discuss the new definition and classification of FMS in the ICD-11 with the boards of other medical associations (e.g. rheumatology) or FMS-patient organisations.

As clinicians, researchers and guideline makers occupied with FMS, we offer critical comment on taxonomy, definition and coding of FMS according to the ICD-11 and the potential for negative consequences for patient care and research.

Taxonomy
FMS is no longer identified as a condition of the musculoskeletal system, contrary to current understanding in the literature (4). Remarkably, the body structures involved in CWP as listed in the IASP proposal of June 26, 2019, namely connective tissue, skeletal and/or smooth muscle structures (5) have been eliminated in the ICD-11.

The IASP working group has not published any statement to provide clarification of why the initial proposal with which we agree has not been incorporated into the definition of CWP and FMS in ICD-11. The five body quadrants identified for pain location for CWP and FM include (upper left, upper right, lower left, lower right of the body) and axial (neck, back, chest and abdomen) (1-3). With the ICD-11 requirement that 4 of 5 body regions be painful in order to meet FMS criteria, primary headache and irritable bowel syndrome (IBS) pain could be attributed to FMS. Thus, the ICD-11 definition of FMS has transformed FMS to be a multisystem pain disorder. We acknowledge that many FMS-patients meet the criteria of other chronic pain syndromes such as irritable bowel syndrome or chronic tension headache (so-called overlapping pain conditions) (6). However, this statement similarly also applies to other chronic primary pain conditions (7). The consideration of potential comorbidities is important for the management of FMS (8). However, a “lumping” approach including different chronic pain syndromes such as FMS, IBS and chronic tension headache in one category is not appropriate because – besides common general treatment principles such as education and physical activity – specific pharmacological treatment options are recommended for each of these chronic primary pain syndromes and may differ according to the condition.

Chronic primary headaches are crossreferenced in this section making use of the “multiple parenting” option of ICD-11, which means that chronic migraine is listed in both the headache section and the chronic pain section (2). We suggest that “multiple parenting” should also be possible for FMS in ICD-11. We believe that FMS should receive a diagnostic code in the chapter “Diseases of the musculoskeletal system or connective tissue”, too.

In addition, we suggest that FMS should be integrated in the subcategory “chronic primary musculoskeletal pain” as “chronic primary widespread musculoskeletal pain” (9) in accordance with the meaning and understanding of fibromyalgia (pain in muscles and tendons) and its current use in the literature (4). Moreover, we suggest that pain sites in the head, face, and abdomen should be excluded in the definition of FM as outlined by the 2016 criteria (10).

(...)

Coding

(...)

We express our concerns that the lack of a unique code for FMS has the potential for negative consequences for patient care. There remain many health care providers claiming that FMS does not exist (15).

Legitimacy of FMS as a disease was previously supported when the WHO assigned a unique diagnostic code in ICD-9 and ICD-10. Thus, ICD-11 is retrogressive compared to ICD-9 and ICD-10. In addition, the lack of a unique diagnostic code for FMS can compromise patient care and research. In countries, where ICD code use is obligatory, treatment reimbursement may be challenging. Finally, health care services with data of statutory health insurance companies in countries which require ICD-codes will no longer be possible.

We suggest that a unique diagnostic code be assigned to FMS which is different from that of CWP.

We understand that the final ICD-11 classification was a compromise within the IASP/WHO working group between divergent opinions regarding the elimination or retention of a diagnostic code for FMS (R.-D. Treede, personal communication). It is unfortunate that these imminent changes in the ICD-11 were not more widely discussed in the pain or rheumatology communities nor with FMS patient representatives.

The WHO offers a webpage for comments on the ICD-11: https://icd.who.int/dev11. If the reader of this paper, patient organisations and medical associations share (some of) our concerns and suggestions, we urge that commentary could be made on this webpage. We hope that sufficient comment will prompt the IASP/WHO working group to modify the taxonomy, definition and coding of FMS in ICD-11.


Full free text attached to this post or can be downloaded from:

Abstract: https://www.clinexprheumatol.org/abstract.asp?a=18721
PDF: https://www.clinexprheumatol.org/article.asp?a=18721


[Edit: Corrected "May 2016" to May 2015.]

 

To submit comments on ICD-11 coding for Fibromyalgia:

First register with the ICD-11 development platform, here:

https://icd.who.int/dev11/Account/Register


The listings for "Fibromyalgia syndrome", "Fibromyalgia" and "Chronic widespread pain" can be found here:

Foundation Component:
https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/236601102

ICD-11 for Mortality and Morbidity Statistics:
https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/849253504


Click on the symbol that looks like two speech bubbles (grey and orange at the top right) to add Generic comment.
Or click wherever you see the small speech bubble symbols at the end of Code Titles, "Description", "Additional Information".

Comments can also be left on two proposals which were submitted by Antonia Barke, in July 2018, on behalf of the IASP/WHO working group, and approved and implemented by the WHO in December 2019:

https://icd.who.int/dev11/proposals...lGroupId=c92fff4a-f3e4-42f9-a1f2-ef12b55af222

https://icd.who.int/dev11/proposals...lGroupId=fdc2bb1c-7632-4984-8867-8d544860ca1a


Again, look for small orange or orange and grey speech bubbles, and click on these to read or add comment.

Note that once a comment has been posted, it cannot be edited or removed, so best to draft comments off-line before submitting. No formatting is allowed for comments - so draft in plain text only.

 

[US, Canada and Australia specific]

The NCHS/CDC's progress towards eventual adoption and implementation of ICD-11 for Mortality reporting and adoption of ICD-11 (or development of a clinical modification of ICD-11 for Morbidity reporting/reimbursement) can be followed in NCVHS Full Committee meetings.


The most recent virtual Full Committee Meeting of the National Committee on Vital and Health Statistics (NCVHS) was held on July 20-21, 2022.

Agenda, video recordings and meeting materials for this two day meeting can be accessed here: https://ncvhs.hhs.gov/meetings/full-committee-meeting-11/

On meeting Day One, an update on the progress towards adoption and potential modification of ICD-11 for US use was presented by Rich Landen and Denise Love (Co-chairs, Subcommittee on Standards):

Day One, Wednesday, July 20:

Agenda item: 1:30 pm Subcommittee on Standards Updates Developments in ICD-11 transition
Rich Landen & Denise Love, Co-chairs, Subcommittee on Standards

Presentation slides: https://ncvhs.hhs.gov/wp-content/uploads/2022/07/Presentation-Standards-Subcommittee-Update-Rich-Landen-July-20-2022.pdf


Slides #8, #9,#10:




Rich Landen begins speaking about ICD-11 at 5:06:00 in from beginning of YouTube video meeting Day One:

Code:

https://www.youtube.com/watch?v=rKU04uG1k30

No transcript available yet from meeting materials page.

 

[Australia specific]

https://www.aihw.gov.au/about-us/in...ustralian-collaborating-centre-for-who/icd-11

International Classification of Diseases revision

Historically the ICD has been revised every 10 years to ensure its continued currency and utility. The current revision (ICD-10) was approved in 1990 by the World Health Assembly (WHA), the decision making body of the World Health Organization (WHO). Australian implementation occurred in 1997 with ICD-10 being used for reporting mortality data, and in 1998 an Australian modification was developed for morbidity coding.

The process to update the classification to the eleventh revision (ICD-11) was initiated by WHO in 2007. The design of ICD-11 has a Foundation component of clinical terms which can be expressed in tabular lists according to the expected use. The main tabular list for ICD-11 is made to collect data on disease and causes of death and is called ICD-11 for Mortality and Morbidity Statistics (ICD-11 MMS). Other tabular lists will be created for other uses such as those for Primary Care, Quality and Safety and special clinical groups.

Use cases
Two of the stated goals of the ICD revision process were to:

1. establish a classification-terminology linkage from ICD-11 to the Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT), and
2. minimise the need for country specific modifications by creating a structure within ICD-11 to accommodate such modifications.

It is envisaged the classification will serve the needs of multiple use cases, which include:

• mortality (causes of death)
• morbidity (diseases and related health problems), and
• specialty adaptations and uses in different settings (for example primary care and clinical care) for different purposes (for example research, public health monitoring and safety and quality measures).

The objectives of the ICD revision process were to:

• revise the ICD classification in line with scientific advances, to serve multiple purposes including mortality and morbidity statistics as well as clinical use in primary care, specialty care and research
• continue to serve as an international standard in multiple languages and settings to allow for comparable data
• link with computerised health information systems (directly use standard terminologies and other health informatics applications to be “electronic health application ready”).

ICD-11 activities in Australia
The AIHW has been leading implementation activities in Australia since the revision was announced in 2007.

Latest news
The AIHW is now publishing a stakeholder information update document on a six-monthly basis.
ICD-11 stakeholder update - July 2022 (PDF, 723 kB )


ICD-11 revision launch
An alpha draft of ICD-11 was released to the public for review in July 2011. This was the first step in allowing wider participation of the global health community and multiple stakeholders in the development process of ICD-11.

In July 2011, the AIHW (as the ACC) hosted an Australian event to announce the ICD-11 revision process. This event, titled Think before you measure, was held in association with a symposium on classifications and hosted by the University of Sydney. The event announced the ICD-11 revision and the opportunity for public review to promote participation in the process.

ICD-11 field testing
In 2016-17, as part of the then ICD-11 Revision project plan, the AIHW lead the first phase of morbidity field testing of ICD-11 MMS in Australia, on behalf of WHO. The goals of this field testing were to:

• inform whether ICD-11 was fit for purpose
• identify any changes and enhancements that may be required, and
• confirm any transitional and implementation issues.

The Australian Bureau of Statistics conducted ICD-11 MMS field testing for mortality purposes at the same time. Results from both tests showed more work was required.

Phase 2 morbidity field testing followed in 2017, with Phase 3 undertaken in 2018. These tests assessed the ease of use of the post-coordination functions of the classification and more complex scenarios for coding.

Stakeholder workshops
As part of socialising the classification in Australia, three workshops have been held in 2017, 2018 and in 2021 to update stakeholders on the progress of ICD-11 development by WHO and ascertain issues and considerations for its potential implementation in Australia.

The AIHW commissioned Shepheard Management Consultants to undertake in depth consultations with stakeholders during late 2018 and early 2019, resulting in a number of recommendations to assist the ICD-11 decision making process in Australia. The ICD-11 Review stakeholder consultation report was published in 2020.

The third stakeholder workshop in 2021 was held to validate the recommendations made in this report.

Further information
If you would like further information on ICD-11 please contact the ACC at who-fic-acc@aihw.gov.au.

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

[A copy of the AIHW stakeholder information update July 2022 is also attached to this post.]

 

I've mentioned before that WHO does not like national (aka clinical) modifications of its international version of ICD and would prefer to limit the number of modifications of ICD-11 in preference to adding additional terms in national linearizations derived from the core international release of ICD-11 MMS.

Extract, presentation by Rich Landen:

Code:

https://youtu.be/rKU04uG1k30?t=18724

Margaret Skurka, contributing to presentation re status of Canadian and Australian progress towards transitioning to ICD-11:

"...the WHO is discouraging as best they can for any country to do a modification [of ICD-11]; they say if you identify something that isn't in it, tell us now and we will add it. So, they really, really don't want - this should be one coding system that is workable for the entire world."

"Australia...is hoping to not do a national modification...they are considering it...we're all trying to co-operate with WHO so there is one system for the world. [Adoption in Australia] can certainly be sooner if they aren't going to make any changes to it."​

 

@Dx Revision Watch

A question has come up on ICD-11 I'm hoping you might know.

Now that ICD-11 is officially released globally, does WHO have a defined schedule to release updates to it?

And will changes to the version of ICD-11 in the maintenance platform be implemented in that platform whenever approved or do they have some schedule there as well?

Hopefully, I haven't butchered the wording of the question.
Thanks in advance

 

Apologies @Medfeb for delay in responding - I've only just spotted this query.

The WHO publishes a new release of the blue ICD-11 MMS annually. The most recent release is:

ICD-11 for Mortality and Morbidity Statistics (Version : 02/2022)

We should anticipate another release in early 2023.

Since the initial release, in 2018, there have been updated releases published in:

• 2022-02 (latest release)
• 2021-05
• 2020-09
• 2019-04
• 2018 (initial release)

According to the ICD-11 Reference Guide, "updating is carried out at different levels with different frequencies. That will keep stability for mortality and allow quicker updates for morbidity use..."

So the the timing of incorporation into the blue ICD-11 MMS browser depends on the class of a change and its level of impact on the stability of international coding and impact on data collection/data aggregation.

There is also a clause: "unless urgent public health needs require otherwise." So for example, new codes relating to Covid-19 were fast tracked for incorporation into the blue ICD-11 MMS Browser in between scheduled releases.

See the ICD-11 Revision Guide section:

https://icdcdn.who.int/icd11referenceguide/en/html/index.html#annex-a-icd11-updating-and-maintenance

3.12 Annex A: ICD-11 Updating and Maintenance

This Annex describes the review process, the release cycles and the proposals workflow for updating ICD-11.

Official releases of the ICD-11 classification are produced annually for international use in mortality and morbidity (this is known as the ‘blue browser’). By contrast, the ICD-11 Foundation Component is continuously updated. The updating is carried out at different levels with corresponding different frequencies.​

The ICD-11 is being released in five-yearly ‘stable’ versions for international use (contains updates that impact on the four- and five- character structure), unless urgent public health needs require otherwise. The releases are supplemented with version identifiers that are used for reporting in conjunction with the codes. Transition tables and materials showing the differences are provided with every version.​

Updates at a more detailed level than four- and five- characters can be published annually. Small error corrections that serve to clarify meaning, indexing or errors, may be communicated annually. Additions to the index can be done on an ongoing basis.

Mortality and morbidity rules will be updated in longer term cycles of every 10 years.

All countries that have implemented the ICD-11 are encouraged to adopt the updates in order to ensure greatest possible standardisation of coding results. If a country for whatever reason cannot implement a certain year of updates it shall at least ensure that the reported data is in line with the most recent version of ICD-11.​

(...)

A.7 Updating Cycle

The updating is carried out at different levels with different frequencies. That will keep stability for mortality and allow quicker updates for morbidity use.

• Updates that impact on international reporting (the four and five-character structure of the stem codes) will be published every five years.
• Updates at a more detailed level can be published at annual rates and pending the needs of clinical modifications also twice a year.
• Additions to the index can be done on an ongoing basis.
• Mortality and morbidity rules will be updated in a 10-year cycle.
• Other updates to the reference guide can be published at annual rates.

​

(...)


There is a table after the text above which lists the type of changes and how they are classified in terms of a Major or Minor change.

Depending on the class of a submitted change, an approved proposal will be implemented in the orange maintenance browser within a day or two following approval, when the orange browser is updated with the most recently approved batch of proposals.

Where the approved change is of the type that can be incorporated annually, it will appear in the blue ICD-11 MMS Browser when the next version of the ICD-11 MMS is published.


For example, my proposal to include the acronym:

"POTS - [postural orthostatic tachycardia syndrome]"

under Synonyms/Index terms under existing ICD-11 category: 8D89.2 Postural orthostatic tachycardia syndrome

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

was approved and implemented in the orange maintenance browser in June 2022, in both the Foundation Component and the MMS Linearization, and is waiting for incorporation into the next release of the blue ICD-11 MMS Browser.

I hope this answers your query.


By the way, there is still no sign of the Goldberg led, non mandatory, ICD-11 PHC*


*The still unpublished ICD-11 PHC is a clinical guideline written in simpler language to assist non-mental health specialists, especially primary care practitioners and non medically trained health workers, and also intended for use in low resource settings and low- to middle-income countries, with the diagnosis and management of common mental disorders. It comprises around 27 mental disorders and contains no other disorders or diseases. Like the ICD-10 PHC (1996), this revised diagnostic and management guideline will not be a mandatory guideline for use by WHO member states.

It should not be referred to as the "abridged" version of the core ICD-11 MMS or the "primary care version" of ICD-11, as it contains no physical disorders, conditions or diseases.

 

ICD-11 and Scotland:

https://www.gov.scot/publications/health-and-social-care-data-board-meeting-minutes-23-august-2022/

Publication - Minutes
Health and Social Care Data Board meeting minutes: 23 August 2022
Published 28 September 2022
Directorate
Digital Health and Care Directorate
Date of meeting 23 August 2022
Date of next meeting 27 October 2022
Minutes from the meeting of the health and social care data board meeting on 23 August 2022.

Extract:

ICD-11 wider implementation

GW and JW provided an overview of ICD-11 implementation and the risks associated with wider implementation within mental and physical health.

The board noted:

• that the World Health Organisation (WHO) agreed to implement ICD-11 at the World Health Assembly in 2019 As the UK is a member of the WHO they have an obligation to implement ICD-11 and as Scotland is part of the UK, this also applies in Scotland
• ICD-10 is the current approved UK version
• as of January 2022, the WHO can accept data in ICD-11 format and expects member countries to work towards implementation
• from November 2022, Health Boards in Scotland should implement ICD-11 for clinical diagnosis within mental health however ICD-11 data is not currently being collected As an interim solution coder will map diagnosis contained within patients notes to ICD-10 codes for the purposes of collecting data for Scottish Morbidity Records
• NHS Digital is beginning initial engagement with stakeholders regarding implementation of ICD-11 and PHS are sighted on how this work is progressing in England
• wider implementation of ICD-11 is a substantial change and will require a programme of work to establish the details of how the health sector would implement ICD-11
• that implementation of ICD-11 in Scotland is expected to take up to five years

The board was asked:

• to give approval for the Data Strategy to commit to starting a programme of work for the wider implementation of ICD-11

The board agreed:

• the Data Strategy to set out a commitment to begin a programme of work for the wider implementation of ICD-11

Next steps:

GW/JW to provide the Board with further information regarding the options, risks and recommendations for wider implementation of ICD-11 This will be brought back to the Data Board once options, risks and recommendations have been appropriately developed

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

The 2022 Royal College of Psychiatrists International Congress: ICD-11 Implementation
WEDNESDAY, JULY 13, 2022

https://www.cugmhp.org/the-2022-roy...international-congress-icd-11-implementation/

Extract:

During the session, Dr. John Mitchell, who is leading the implementation of ICD-11 Mental, Behavioural or Neurodevelopmental Disorders on behalf of the Scottish government, highlighted the strategic decision for creating the ICD-11 Implementation Group so that government officials, practitioners, and individuals with lived experience can collectively be part of the national implementation process.

Dr. Corinna Hackmann expanded on the importance of incorporating the perspectives of individuals with lived experience of mental illness. Strategies such as understanding individuals’ views on receiving mental health diagnoses, shared decision-making, and clear communication are important to improving clinical care, especially as providers transition to using the ICD-11.

Additionally, Dr. Dirk Maliepaard shared exciting news that psychiatrists in the Highlands region of Scotland have already begun using the ICD-11. Although there were some challenges encountered in implementation, psychiatrists have generally provided positive feedback on the usefulness of the ICD-11 Clinical Descriptions and Diagnostic Requirements*.


*This will be a reference to the Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders - the ICD-11 equivalent to the ICD-10 "Blue Book" for use by mental health professionals - not the as yet unpublished, ICD-11 PHC guideline for 27 "common mental disorders".

 

October 1 has passed, which means that in the US, the new unambiguous code for ME/CFS is available for use by clinicians.