A round up of updates on ICD-11

Post #360 Shortlink: https://wp.me/pKrrB-59G

1. Next release of the ICD-11 MMS (the blue “Version for preparing implementation” platform)

It was anticipated that the ICD-11 Blue platform would continue to be updated annually to incorporate all the changes approved and implemented in the Orange Maintenance platform since the last update was released.

There has been no new release of the Blue platform since April 2019.

So, for example, the exclusions for 8E49 PVFS; BME; and CFS under 6C20 Bodily distress disorder, which were approved and implemented in the Orange Maintenance platform in January, this year, don’t yet display under the exclusions list for 6C20 Bodily distress disorder in the Blue platform.

A couple of weeks ago, I contacted the WHO’s Dr John Grove to enquire when the next update of the Blue platform was anticipated to be published.

I also asked when the Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD-11 Mental, Behavioural and Neurodevelopmental Disorders is expected to be finalised and released.

Yesterday, I received a response from the WHO’s Dr Robert Jakob who advised that the 2020 release of the ICD-11 Blue platform will be posted in a few weeks.

 

2. Proposal for deprecation of the prefix “Benign” from “Benign myalgic encephalomyelitis”

In February, I submitted a new proposal for removal of the prefix “Benign” from “Benign myalgic encephalomyelitis” citing, inter alia, the precedent of the removal of the “Benign” prefix for the final update of ICD-10 (Version: 2019).

My proposal and rationale can be read here in PDF format.

There remain hundreds of proposals waiting to be reviewed in the ICD-11 Proposal Mechanism and my proposal has not yet been processed. I am hoping it will be reviewed and accepted in time for inclusion in the ICD-11 MMS 2020 release.

 

3. Finalisation and publication of the CDDG

The Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD-11 Mental, Behavioural and Neurodevelopmental Disorders has been developed by the WHO Department of Mental Health and Substance Abuse. It is the equivalent of the ICD-10 “Blue Book”.

The descriptive texts in Chapter 06: Mental, behavioural or neurodevelopmental disorders in the core version of ICD-11 are intended for use by coders and clerical workers as a basis for statistical reporting.

The CDDG provides expanded clinical descriptions, essential (required) features, boundaries with other disorders and normality, differential diagnoses, additional features, culture-related features and codes for all mental and behavioural disorders commonly encountered in clinical psychiatry and is intended for use by mental health professionals and for general clinical, educational and service use.

The draft texts for the CDDG have not been accessible to public stakeholders for review and comment, though clinicians have been able to register to review the draft and provide feedback throughout its development, via the Global Clinical Practice Network platform.

Last year, the WHO stated that the CDDG would be published “as soon as possible” after the May 2019 adoption of ICD-11 at the 72nd World Health Assembly.

I was advised, yesterday, by Dr Jakob, that the CDDG is still being amended based on feedback from the field and that the mental health team hasn’t provided a clear deadline [for its finalisation and release].

 

4. Publication of the ICD-11 PHC

There is no indication when the WHO expects to finalise and release the ICD-11 PHC — 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.

The ICD-11 PHC is proposed to comprise 27 mental disorders and contains no general medical diseases. Like the ICD-10 PHC (1996), this revised diagnostic and management guideline will not be mandatory for use by member states.

For the mandatory core ICD-11 classification, the WHO has gone forward with Bodily distress disorder (BDD), which is conceptually similar to DSM-5’s Somatic symptom disorder (SSD).

But for the ICD-11 PHC, a disorder category called “Bodily Stress Syndrome (BSS)” that has been adapted from the Fink et al (2010) Bodily distress syndrome (BDS) is proposed to be included to replace ICD-10 PHC’s F45 Unexplained somatic complaints and F48 Neurasthenia categories.

See Comparison of SSD, BDD, BDS, BSS in classification systems, July 2018.

Under exclusions and differential diagnoses for BSS, certain psychiatric and general medical diagnoses have to be excluded but CFS, ME; IBS; and FM appear not to be specified as exclusions.

For more information on the ICD-11 PHC see this post: Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders

Slide presentation: MUS becomes Bodily Stress Syndrome in the ICD-11 for primary care, Marianne Rosendal

The ICD-11 PHC has not been developed on a publicly accessible platform and the draft texts for the 27 mental disorders proposed to be included are not available for public stakeholder review and comment.

The “Bodily Stress Syndrome (BSS)” category, its proposed text and proposed criteria need stakeholder scrutiny.

If ICD-11 PHC goes forward with its proposed BSS category, there will be all these diagnostic constructs and criteria sets in play:

Somatic symptom disorder (DSM-5; under BDD Synonyms list in the core ICD-11)
Bodily distress disorder (core ICD-11; SNOMED CT)
Bodily Stress Syndrome (ICD-11 PHC guideline for 27 mental disorders)
Bodily distress syndrome (Fink et al 2010, operationalized in Denmark and beyond)

plus the existing ICD-10 and SNOMED CT Somatoform disorders categories and their equivalents in ICPC-2.

 

5. A revised version of my report “Update on classification and coding of PVFS, ME and CFS for ICD-11” (v4 August 2020) is available to download

The PDF can be downloaded here.

Thumbnail pages 1 and 4:

 

6. The ICD-11 codes are now frozen

On February 10, 2020, the WHO stated on the Proposals platform: “The ICD-11 codes are now frozen. Proposed changes to the classification that would result in a code change are not permitted.”

Changes that would not disrupt the structure of the code hierarchies, for example, additions to the Index, addition or deletion of Synonym terms or Exclusion terms, edits to category Description texts or correction of typos are permissible.

But proposals for major changes such as relocating an existing Concept Title to a different chapter (which would necessitate a code change) or moving a term under a different “primary parent” code within its current chapter could not be considered.

For further information on ICD-11 update schedules and what classes of changes are permitted see:

ICD-11 Reference Guide sections 3.8.1 to 2.8.7: 3.8 Annex: ICD-11 Updating and Maintenance

WHO retires “Benign” from “Benign myalgic encephalomyelitis” for final ICD-10 release

Post #357 Shortlink: https://wp.me/pKrrB-56g

In my report for the December edition of the ME Global Chronicle, I set out how the G93.3 terms:

Postviral fatigue syndrome

Benign myalgic encephalomyelitis

Chronic fatigue syndrome

are classified in the World Health Organization’s international version of ICD-10 and how these terms have been classified for ICD-11.

I have an update on ICD-10 and it’s good news!

In January, the WHO released ICD-10 Version: 2019. With ICD-11 on the horizon, this release will be the final update for the WHO’s international version of ICD-10, apart from corrections and exceptional additions.

In March 2016, a representative from the Canadian Institute for Health Information submitted a request and supporting rationale to the ICD-10 Update and Revision Committee (URC) for removal of the prefix “Benign” from “Benign myalgic encephalomyelitis”.

This request for a change was approved by the URC in September 2016 for implementation in the next release. 

For ICD-10 Version: 2019, the G93.3 Tabular List inclusion term is now Myalgic encephalomyelitis.

(The term, “Benign myalgic encephalomyelitis” has been retained as an Index term.)

 

View the revised listing for the G93.3 codes on the ICD-10 Browser, here: https://icd.who.int/browse10/2019/en#/G93.3 or in the screenshot, below.

Note that for ICD-10, Chronic fatigue syndrome is not included in the Tabular List but is included in Volume 3: Index, where it is coded to the G93.3 Postviral fatigue syndrome concept title term.

For ICD-11, the WHO has retained Postviral fatigue syndrome as the concept title term in Chapter 08: Diseases of the nervous system under parent: Other disorders of the nervous system. The new code for ICD-11 is: 8E49.

Benign myalgic encephalomyelitis and Chronic fatigue syndrome are both specified as inclusion terms under Postviral fatigue syndrome in ICD-11’s equivalent to the Tabular List and take the 8E49 code. A number of historical and alternative terms are retained as index terms and all 14 index terms are coded to 8E49.

 

This is how the G93.3 terms are classified for ICD-10 Version: 2019:

Image 1: ICD-10 Browser Version: 2019, Accessed February 20, 2020: https://icd.who.int/browse10/2019/en#/G93.3

Image location: https://dxrevisionwatch.files.wordpress.com/2020/02/meicd1019.png

 

The WHO expects Member States to be using the most recent release of ICD-10. But countries will implement the ICD-10 Version: 2019 release according to their own schedules. 

NHS England and ICD-10:

NHS England currently uses ICD-10 Version: 2016. I have contacted NHS Digital’s classifications lead to establish whether NHS Digital intends to implement Version: 2019 or may be considering skipping the new release in preference to implementing ICD-11, at some point in the future.

If there is no mechanism for incorporating selected changes in a new release into earlier versions, NHS England might not be able to absorb this change into the version it is using.

 

Will this change be absorbed automatically for ICD-11?

This revision for the final release of ICD-10 sets a precedent for the national modifications of ICD-10, for example, the U.S. ICD-10-CM and Canadian ICD-10-CA, but also for ICD-11. 

Proposals submitted in March 2017 by Chapman & Dimmock, and by the IACFS/ME for removing “Benign” from “Benign myalgic encephalomyelitis” were rejected by the WHO in early 2019.

In February, I submitted a new proposal for removal of the “Benign” prefix for ICD-11 citing the URC’s 2016 decision and the implementation of that decision for the final release of ICD-10.

You can read a copy of my new proposal and rationale here: http://bit.ly/BenignICD11

I have updated the PDF included in my report in the December edition of the ME Global Chronicle to reflect this change:

Download the PDF of my updated report here:

Update on the classification of PVFS, ME and CFS for ICD-11 Report One | November 2019 | v3 18/02/20

 

An edited version of this report is scheduled for publication in the March edition of the ME Global Chronicle.

Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part Three: WHO rejects Dr Dua’s proposal

Post #346 Shortlink: https://wp.me/pKrrB-4wZ

Related posts:

Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part One

Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part Two

 

Part Three (and it’s good news, for once)

As reported in Parts One and Two, three proposals for the ICD-10 G93.3 legacy categories, Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome have sat unprocessed in the ICD-11 Proposal Mechanism for over a year:

the proposal by Dimmock & Chapman (submitted March 26, 2017);

the proposal by Dr Lily Chu on behalf of the IACFS/ME (submitted March 31, 2017);

the proposal by Dr Tarun Dua (submitted November 06, 2017).

If you are not registered for access to the ICD-11 Proposal platform, click to download the proposal submitted by Dimmock & Chapman in PDF format.

 

Dr Tarun Dua’s proposal to kick the G93.3 legacy categories out of the Neurology chapter

Dr Tarun Dua is a medical officer working on the Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders, WHO Department of Mental Health and Substance Abuse. This WHO department has responsibility for both mental disorders and neurological diseases and disorders. Its Director is Dr Shekhar Saxena.

Dr Dua had acted as lead WHO Secretariat and Managing Editor for ICD Revision’s Topic Advisory Group (TAG) for Neurology, which was chaired by Prof Raad Shakir.

When Dr Dua submitted a proposal, last year, recommending that “Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)” [sic] should be removed from the Diseases of the nervous system chapter and reclassified in the Symptoms, signs chapter as a child under Symptoms, signs or clinical findings of the musculoskeletal system, it was initially unstated whose position this controversial recommendation represented.

Read Dr Dua’s proposal in PDF format from Page 5 of this November 2017 commentary.

TAG Neurology had ceased operations in October 2016, leaving proposals for the G93.3 legacy categories hanging and the terms still unaccounted for in the public version of the ICD-11 Beta draft. The terms were eventually restored to the draft in March 2017.

Since early 2017, we had been advised several times by senior WHO officers that decisions regarding these categories were “on hold” while an in-house evidence review was being undertaken.

Moreover, WHO senior classification expert, Dr Robert Jakob, had assured me (via email in March 2017) that WHO had no intention of dumping these categories in the Symptoms, signs chapter — yet here was Dr Dua calling for precisely that.

The key question being: Did this recommendation represent the outcome of a now concluded evidence review or did it represented only the position of Dr Dua?

Dr Dua eventually stated that “…the proposal [had] been submitted on behalf of Topic Advisory Group (TAG) on Diseases of the Nervous System, and reiterates the TAG’s earlier conclusions.” But neither Dr Dua nor her line manager, Dr Saxena, were willing to provide us with responses to other queries raised in relation to this proposal, including, crucially: How does this proposal relate to the in-house evidence review?

We were subsequently advised by WHO’s Dr John Grove (Director, Department of Information, Evidence and Research) that the systematic evidence review would determine if the terms needed to be moved to any other specific chapter of ICD-11 and that the outcomes would be provided for review by the Medical Scientific Advisory Committee (MSAC).

A formal response by Dimmock & Chapman to Dr Dua’s proposal can be read in PDF format here Response by Dimmock & Chapman to Dr Tarun Dua proposal of November 6, 2017.

 

WHO rejects Dr Dua’s proposal 

On November 19, the proposal was marked as Rejected by ICD-11 Proposal Mechanism admins:

Screenshot: Accessed November 20, 2018:

https://icd.who.int/dev11/proposals/f/en#/http://id.who.int/icd/entity/569175314

This decision to reject Dr Dua’s recommendation that the terms should be relocated under the Symptoms, signs chapter is accompanied by a brief rationale from ICD-11 Proposal Platform admins “Team3 WHO”:

Screenshot: Accessed November 22, 2018:

 

Importantly, the decision to retain the terms in the Disorders of the nervous system chapter is supported by the WHO MSAC and CSAC committees.

(See Reference 10 for WHO/ICD-11’s guiding principles for consideration of legacy terms and potential chapter relocations — guidance with which Dr Dua is familiar and has cited, herself, when drafting other proposals, but which she evidently chose to disregard in the case of the G93.3 legacy categories.)

 

This means that these ICD-10 legacy terms continue to stand as per the “Implementation” version of the ICD-11 MMS that was published in June 2018:

https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f569175314

 

But we are not done yet…

It’s not known when the remaining proposals submitted by myself and jointly with Mary Dimmock will be processed.

There remains a backlog of over 1000 unprocessed proposals, a number of which had met the March 30, 2017 proposal deadline and were expected to have been processed last year, in time for consideration for inclusion in the June 2018 “Implementation” release.

According to summary reports of the WHO-FIC Network Council’s April 26 and September 26, 2018 teleconferences:

  • Between June 2018 and the 2019 [World Health Assembly] resolution, WHO will work to improve user guidance around the classification and any final sorting of the extension codes, but there is not an intention to “reopen the package” of ICD-11 or to make major changes
  • The codes will not change after June 2018, and the URIs [Unique Reference Identifiers] will remain the constant, immoveable identifiers for each concept that underpin the classification
  • An update cycle was agreed by JTF [Joint Task Force] last week, including ongoing update of foundation entities (e.g. index terms, synonyms, extension codes, etc.) with
    • annual updates for entities below the shoreline,
    • a 5-year cycle for update of entities above the shoreline, and
    • a 10-year cycles for updates to the rules.

and from the September 26, 2018 teleconference:

  • WHO has updated the proposal platform to allow voting by CSAC* members and to align the process with the historical practices of the URC [ICD-10 Update and Revision Committee].
  • 90 proposals have been identified from the platform for consideration by the CSAC this year, though not all of them can be reviewed in detail face-to-face during the WHO-FIC Network Annual Meeting 2018. A call may be held in advance to discuss some specific priorities.
  • Given the huge volume of proposals, the meeting will go through the new procedures for the CSAC, review the voting process and tools, overview the proposal platform and how to use it, and determine timelines and workload for after the meeting.
  • CSAC governance will also be presented together with the content of ICD-11 prior to submission of the report on ICD-11 to the WHO Governing Bodies for review by the WHO Executive Board [in January 2019]

Source: WHO-FIC Council Google platform: WHO-FIC Council Teleconferences

*The Classifications and Statistics Advisory Committee (CSAC) takes over the role of the ICD-10 Update and Revision Committee (URC). The last update for ICD-10 will be 2019.

 

The ICD-11 MMS is expected to be frozen again in January 2019 in preparation for submission of the report to the Executive Board (EB):

 

Beyond World Health Assembly adoption, ICD-11 will be subject to an update and maintenance cycle:

(See Reference Guide Annex 3.7.1 – 3.7.6 for detailed information on ICD-11 Updating Cycles and Proposal Workflows.)

I’ve been unable to confirm whether the first update released after the June 2018 “Implementation” version would be a January 2019 release, or whether the June 2018 version is intended to remain more or less stable for a further year, until January 2020.

If WHO were to accept any of the proposals contained within my individual submissions and my joint submissions with Mary Dimmock, for example, approving our recommendations for deprecating the prefix “Benign”; deprecating Postviral fatigue syndrome as lead Concept Title; assigning separate Concept Title codes to Myalgic encephalomyelitis and to Chronic fatigue syndrome; or approving Exclusions under Bodily distress disorder (BDD), any approved recommendations would appear initially in the orange ICD-11 Maintenance Platform pending their eventual incorporation into an “Implementation” release.

I will keep you apprised of any significant developments.

 

References:

1 G93.3 Postviral fatigue syndrome, ICD-10 Browser Version: 2016. Accessed November 22, 2018

World Health Organization finally releases next edition of the International Classification of Diseases (ICD-11) Dx Revision Watch, July 25, 2018

3 8E49 Postviral fatigue syndrome, ICD-11 for Mortality and Morbidity Statistics (ICD-11 MMS) 2018 version for preparing implementation. Accessed November 22, 2018

4 8E49 Postviral fatigue syndrome, ICD-11 (Mortality and Morbidity Statistics) Maintenance Platform. Accessed November 22, 2018 The content made available on this platform is not a released version of the ICD-11. It is a work in progress in between released versions.

A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two. Dx Revision Watch, April 3, 2017

6 PDF: Proposal: Revision of G93.3 legacy terms for ICD-11, Dimmock & Chapman, March 27, 2017

7 Proposal: Revision of G93.3 legacy terms for ICD-11, Dr Tarun Dua, November 6, 2017

8 Response by Dimmock & Chapman to Dr Tarun Dua proposal of November 6, 2017, February 15, 2018

9 ICD-11 Reference Guide June 2018

10 Extract from Response to Dr Dua Proposal of November 6 2017: 4. Compliance with WHO standards and other considerations on relocation, Dimmock & Chapman, February 15, 2018

Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part Two

Post #344 Shortlink: https://wp.me/pKrrB-4rs

Part Two

In Part One, I documented key developments around the potential revision of the G93.3 legacy categories for ICD-11. This report picks up from November 2017.

November 06, 2017: Dr Tarun Dua (Medical Officer, Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders, WHO Department of Mental Health and Substance Abuse) posts a new proposal for these terms on the ICD-11 proposal platform.

The proposal recommends moving “Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)” [sic] from the Diseases of the nervous system chapter to the Symptoms, signs chapter, as a child under Symptoms, signs or clinical findings of the musculoskeletal system.

Click here to read the full proposal Dr Dua November 06, 2017. (If you are not registered with the drafting platform, a copy of Dr Dua’s proposal is included at the end of this commentary.)

November 2017: Dr Dua and Dr Shekhar Saxena are approached by the Countess of Mar to provide clarifications. Dr Dua responds that “the proposal has been submitted on behalf of Topic Advisory Group (TAG) on Diseases of the Nervous System, and reiterates the TAG’s earlier conclusions.” but provides no other clarifications. Dr Saxena does not engage but passes the communication on to Dr Dua, who says she has forwarded the message to the TAG for its consideration. Nothing further is heard from any of them and the enquiries are left hanging.

January 29, 2018: “Team WHO” (an ICD Revision Admin account) posts this comment under the Dr Dua proposal:

Any decisions regarding this entity are on hold until the results of a review become available.”

February 15, 2018: Dimmock and Chapman submit a robust counter analysis of Dr Dua’s proposal and submit further evidence on March 10.

December 2017 – March 2018: In response to the failure of WHO’s Dr Shekhar Saxena and Dr Tarun Dua to provide adequate clarifications in relation to this proposal, the Countess of Mar is advised to write to Dr John Grove, Director, Information, Evidence and Research and Revision Project Lead to put on record significant concerns for the way in which the potential revision of these ICD categories has been handled, the lack of transparency on the part of TAG Neurology, Revision Steering Group and Joint Task Force, and their unwillingness to engage in dialogue.

Over a number of exchanges, Dr Grove provides the following information:

A systematic evidence review will determine if “the category” needs to be moved to any other specific chapter of ICD-11.

The classification team organizes the review which is expected to be completed by mid April 2018.

The outcomes will be provided for review by the Medical Scientific Advisory Committee (MSAC) and will be posted together with the relevant detail on the proposal platform.

New proposals posted on the platform will become part of the workflows of the maintenance mechanism of ICD-11 and be processed in an annual cycle.

The “relevant category will in any case be kept separate from the generic ‘chronic fatigue’ (signs and symptoms).”*

 

*NB: there is no concept term, ‘chronic fatigue’ in ICD-11’s Symptoms, signs chapter. There is a concept term: Fatigue (which was Malaise and fatigue in ICD-10). In March 2017, a long-standing proposal of mine for the addition of exclusions for Benign myalgic encephalomyelitis and Chronic fatigue syndrome under Fatigue was approved by the Beta draft admins, although the request for exclusion of Postviral fatigue syndrome wasn’t actioned and remains unprocessed.

There are several speculative reasons for this: ICD Revision may be considering retiring the Postviral fatigue syndrome term for ICD-11; or retaining the term, but only as an Index Term. This might also account for Dr Dua’s reluctance to clarify what her proposal’s intentions are for the Postviral fatigue syndrome term.

There has been no indication whether any evidence review was concluded in mid April, what the outcome was, or whether any potential new proposals for these categories are currently with the MSAC. But no new proposals from ICD Revision, the MSAC or Dr Dua’s department have been posted on the proposal platform or entered directly into the development draft (now known as the “Maintenance Platform”).

Where does this currently leave these terms?

This is how the ICD-11 MMS stood for the release of the “advance preview” version, on June 18, 2018.

(Note the version of ICD-11 as released does not display the Foundation Component, nor are the current 15 Synonyms and Index terms displayed in this “advance preview” release):

https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f569175314

 

As released in June 2018, the content of the ICD-11 MMS is planned to remain stable until January 2019, when it will be prepared for presentation at the May 2019 World Health Assembly.

The Proposal Mechanism will remain open for submission of new proposals from the MSAC, CSAC and public stakeholders. There is a backlog of over 1300 proposals waiting to be processed.

There are currently three proposals for PVFS, BME and CFS waiting to be reviewed:

The proposal submitted by Dimmock & Chapman (on March 26, 2017)

The proposal submitted by Dr Lily Chu on behalf of the IACFS/ME (on March 31, 2017)

The proposal submitted by Dr Tarun Dua (on November 06, 2017)

 

ICD Revision might potentially post new proposals for PVFS, ME and CFS via the Proposal Mechanism at any point in the future.

While new proposals are expected to be processed as part of the annual maintenance cycle, any approved proposal would not immediately be reflected in the released version of the ICD-11 MMS but carried forward for eventual incorporation into a later release, according to the update cycle for that particular class of change. (See Annex 3.7 of the Reference Guide for maintenance and update schedules, how “Minor” and “Major” changes are defined, guidance on submitting new proposals etc.)

My interpretation of the Reference Guide is that relocation of a category to another chapter would constitute a “Change a primary parent” and a “Structural Change” and would be classed as a “Major Change”, for incorporation on the 5 year update cycle, not the annual update cycle.

It is not yet clear in which year the first update cycle is anticipated to start, i.e., whether the next stable release would be published in January 2020, or if the first update cycle is not scheduled to start until a later year.

 

How soon will member states start using ICD-11?

World Health Assembly endorsement will not come into effect until January 01, 2022. After this date, member states can start using ICD-11 for reporting data when their health systems have transitioned to the new edition.

Dr Christopher Chute, chair of ICD-11’s Medical and Scientific Advisory Committee (MSAC), predicts that early implementers may require at least five years to prepare their countries’ health systems for transition. Member states using a “clinical modification” of ICD are likely to take longer to develop, test and roll out a country specific adaptation — particularly the United States.

There is no mandatory implementation date — member states will migrate to ICD-11 at their own pace. Global adoption will likely be a patchy and prolonged process and for a period of time, the WHO will be accepting data reported using both ICD-10 and the new ICD-11 code sets.

No countries have announced tentative implementation schedules.

NHS Digital says: “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.”

Until the UK has implemented ICD-11, the mandatory classification and terminology systems for use in the NHS are ICD-10 (Version: 2015) and SNOMED CT UK Edition.

Part One

 

References:

1 G93.3 Postviral fatigue syndrome, ICD-10 Browser Version: 2016. Accessed August 14, 2018

World Health Organization finally releases next edition of the International Classification of Diseases (ICD-11) Dx Revision Watch, July 25, 2018

3 8E49 Postviral fatigue syndrome, ICD-11 for Mortality and Morbidity Statistics (ICD-11 MMS) 2018 version for preparing implementation. Accessed August 14, 2018

4 8E49 Postviral fatigue syndrome, ICD-11 (Mortality and Morbidity Statistics) Maintenance Platform. Accessed August 14, 2018 The content made available here is not a released version of the ICD-11. It is a work in progress in between released versions.

5 ICD Revision Joint Task Force Meeting Report 22-22 January, 2017, Cologne, Germany. Page 39, Item 39: Chronic Fatigue Syndrome Advocacy Efforts. Accessed August 14, 2018

A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two. Dx Revision Watch, April 3, 2017

PDF: Proposal: Revision of G93.3 legacy terms for ICD-11, Dimmock & Chapman, March 27, 2017

7 Proposal: Revision of G93.3 legacy terms for ICD-11, Dr Tarun Dua, November 6, 2017

8 Response by Dimmock & Chapman to Dr Tarun Dua proposal of November 6, 2017, February 15, 2018

9 ICD-11 Reference Guide June 2018

10 Extract from Response to Dr Dua Proposal of November 6 2017: 4. Compliance with WHO standards and other considerations on relocation, Dimmock & Chapman, February 15, 2018

Update on the status of the classification of PVFS, ME and CFS for ICD-11: Part One

Post #343 Shortlink: https://wp.me/pKrrB-4r3

Part One

In the World Health Organization’s ICD-10, Postviral fatigue syndrome is classified in the neurological chapter of the Tabular List (at G93.3, under parent block: G93 Other disorders of brain, in Chapter VI: Diseases of the nervous system).

Benign myalgic encephalomyelitis is the inclusion term under Postviral fatigue syndrome and takes the same code. Chronic fatigue syndrome isn’t included in the Tabular List but is indexed in the Alphabetical Index to the G93.3 code.

ICD-10 and ICD-11 do not include the composite terms: “myalgic encephalomyelitis/chronic fatigue syndrome”, “ME/CFS” or “CFS/ME” and composite terms will not be used in this report.

This is how the terms appear in the online browser version of the ICD-10 Tabular List. If you enter “Chronic fatigue syndrome” into the Search field, a drop down displays the code that Chronic fatigue syndrome is indexed to:

http://apps.who.int/classifications/icd10/browse/2016/en#/G93.3

 

Release of ICD-11

In Post #339 I reported on the release, in June 2018, of an “advance preview” version of ICD-11. This version has been released to enable countries to evaluate the new edition, plan for implementation, prepare translations and begin training health professionals. The WHO still has a lot of work to do before the full ICD-11 “implementation package” and companion publications are completed.

ICD-11 is scheduled for presentation at the World Health Assembly (WHA) in May 2019 for adoption by member states but WHA endorsement won’t come into effect until January 01, 2022. After that date, member states can begin using the new edition for data reporting — if their health systems are ready. There is no mandatory implementation date and member states will be migrating to ICD-11 at their own pace and according to their countries’ specific timelines, requirements and resources.

 

Update on classification for ICD-11

The progression of these three ICD-10 categories through the ICD-11 drafting process has been shambolic, mired in obfuscation, immensely frustrating for stakeholders — and still not resolved.

If you would prefer to jump to a report on how these three terms currently stand in ICD-11, as released in June 2018, and skip the key developments, go to Part Two

Key developments: tracking the progress of the ICD-10 G93.3 categories through the iCAT, Alpha and Beta drafting phases, between May 2010 and June 2018:

May 2010: The ICD-10 parent class, Other disorders of brain, is retired for ICD-11. Its retirement affects a number of categories that sit under it, not just Postviral fatigue syndrome.

A change of hierarchy between the three terms is proposed (Screenshot).

Chronic fatigue syndrome is proposed to replace Postviral fatigue syndrome as the new “Concept Title” term, with Benign myalgic encephalomyelitis specified as its inclusion term (Screenshot). Postviral fatigue syndrome is proposed to be relocated under Synonyms to new Concept Title, Chronic fatigue syndrome.

All three terms are later removed from under parent block: Other disorders of the nervous system and placed in a “holding pen” for categories for which decisions are needed to be made or while further chapter restructuring is being carried out.

February 2013: The Beta drafting platform admins or the managing editors for Topic Advisory Group for Neurology inexplicably remove CFS, BME and PVFS from the public version of the Beta platform. No rationale is provided for their removal. No comments or suggestions for edits can be submitted for these terms since the terms are no longer displaying in the draft. This is how proposals for the terms had stood in early 2013, at the point at which they were removed from the public draft (Screenshot).

July 2015: Following a teleconference with the WHO’s Dr Robert Jakob and Anneke Schmider, Chapman and Dimmock provide ICD Revision and Topic Advisory Group for Neurology with a list of neurological and immunological studies and other resources to inform the revision process and the literature review.

February 2017: The three terms have now been missing from the public version of the Beta drafting platform for over four years.

Advocates and international patient organizations lobby the co-chairs and members of the ICD Revision Joint Task Force to place the matter of the continued absence of these terms from the public Beta draft on the agenda for the Joint Task Force’s February 20-22, 2017 meeting, in Cologne.

These appeals do result in the matter being tabled for discussion, as noted in the Meeting Report (Item 39, p39). But no immediate action is taken to restore the missing terms to the Beta draft and no progress report on intentions for these terms is forthcoming.

March 26, 2017: PVFS, BME and CFS are finally restored to the Beta draft under Other disorders of the nervous system, but with this caveat from the Beta draft admin team:

While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD. Team WHO 2017-Mar-26 – 14:46 UTC

PVFS is restored as the lead (Concept Title) term, as it is in ICD-10. BME and CFS are both specified as Inclusion terms. There is a list of around 15 alternative and historical terms under Synonyms and Index Terms — but “the optimal place in the classification is still being identified.”

At this point, ICD-11 has been under development for nearly ten years but Topic Advisory Group for Neurology has yet to publish any progress reports on its proposals for these ICD-10 categories.

This is how the terms stood after they were restored to the Beta draft in March 2017:

 

March 27, 2017: Suzy Chapman and Mary Dimmock finalize and submit a detailed proposal and rationale for PVFS, BME and CFS via the Beta draft proposal platform. This submission meets the March 30, 2017 proposal deadline. The proposal and rationale is supported by international patient organizations and patients. Click to download a PDF of the Proposal and Rationale.

(This proposal remains unprocessed and uncommented on by ICD Revision despite having met the proposal deadline.)

November 06, 2017: A new proposal for these terms is posted by Dr Tarun Dua.

Dr Dua is Medical Officer, Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders, WHO Department of Mental Health and Substance Abuse. This WHO department has responsibility for both mental disorders and neurological diseases. Its Director is Dr Shekhar Saxena.

Dr Dua had acted as lead WHO secretariat and managing editor to the Topic Advisory Group for Neurology, which had been chaired by Prof Raad Shakir.

It is initially unclear who owns this proposal and whose position it represents since Topic Advisory Group for Neurology had ceased operations in October 2016, leaving proposals for these terms hanging. We had been advised by the WHO several times since early 2017 that a literature review was still in progress:

Is this proposal the outcome of a now concluded literature review and do these recommendations already have the approval of ICD Revision?

Or does this proposal represent only the position of Dr Dua or the Department of Mental Health and Substance Abuse?

Four weeks after submitting these recommendations, Dr Dua responds:

“…the proposal has been submitted on behalf of Topic Advisory Group (TAG) on Diseases of the Nervous System, and reiterates the TAG’s earlier conclusions.”

but neither Dr Dua, Dr Saxena or (what remains of) TAG Neurology will provide any responses to requests for additional clarifications.

 

Dr Tarun Dua’s proposal

The proposal recommends that “Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)” [sic] should be removed from the Diseases of the nervous system chapter and reclassified in the Symptoms, signs chapter, as a child under Symptoms, signs or clinical findings of the musculoskeletal system.

Note that Dr Dua has not taken the existing ICD category terms as her reference point — ICD does not use the term, “Myalgic encephalitis” or the composite terms, “Myalgic encephalitis/Chronic Fatigue Syndrome” or “ME/CFS.”

It is not evident from the proposal what Dr Dua/TAG Neurology intends to do with the current Concept Title, Postviral fatigue syndrome — which the proposal does not mention, at all. Nor can it be determined what new hierarchy is being proposed between the terms. Nor is any rationale provided for using different nomenclature to the existing ICD terms.

Leaving aside the proposal, per se, the rationales that accompany it, the misconceptions contained within it and the narrow range of studies it relies on, the submission is sloppy and not fit for purpose.

The rationale for the proposal includes:

“…the lack of evidence regarding any neurological etiopathogenesis of chronic fatigue syndrome…

“When there is sufficient evidence and understanding of the pathophysiological mechanisms, diagnostic biomarkers, and specific treatments, the syndrome can be appropriately classified within the proper block.

“The predominant symptom of those with ME/CFS present is severe fatigue, a manifestation of skeletal muscle dysfunction…

“Epidemiological and Pathophysiological evidence is limited, conflicting, and does not support ME/CFS as a disease of the nervous system or with a principally neurobiological underpinning…

“ME/CFS is thus not a disease of the nervous system. It should be categorized in the Signs and Symptoms chapter given the lack of clear evidence pointing to the etiology and pathophysiology of this syndrome until evidence to organ placement is clarified in years to come.”

 

Click here to read the full proposal Dr Dua November 06, 2017. (If you are not registered for access to the proposals platform, a copy of Dr Dua’s proposal is included at the end of this commentary for ease of access.)

One also has to question why this proposal was submitted at this point when advocates had been advised several times that an in-house evidence review was in progress.

This proposal from a staffer in the Department of Mental Health and Substance Abuse (submitted apparently on behalf of a retired external advisory group) appeared to sit outside that evidence review. But when questioned about the proposal’s status, no-one within WHO seemed to want to have to acknowledge its existence or clarify whether and how it related to the evidence review.

 

Lack of consensus between WHO staffers and ICD Revision

In March 2017, Dr Robert Jakob, Team Leader Classifications and Terminologies, had given the assurance, via an email sent to Suzy Chapman (Dx Revision Watch) and CCd to Stefanie Weber; Dr Christopher Chute; Linda Best; Molly Meri Robinson Nicol; Dr Geoffrey Reed; Dr Tarun Dua; Dr Ties Boerma and the Countess of Mar, that:

“As discussed earlier, chronic fatigue syndrome will not be lumped into the chapter ‘signs and symptoms.'”

Yet this proposal submitted by Dr Dua proposes to do just that.

Evidently, there is a lack of consensus between the WHO’s senior classification lead, Dr Robert Jakob, and Dr Dua/TAG Neurology.

Dr Dua’s proposal also fails to take into consideration WHO/ICD-11 guiding principles on relocation of legacy terms to other chapters. For an expanded commentary on ICD-11 principles concerning potential relocations see Extract from Response to Dr Dua Proposal of November 6 2017.

Nor do the recommendations consider any proposed relocation in the context of data collection, statistical analysis and backward compatibility with ICD-10 and its clinical modifications.

To continue with the status of these terms in the ICD-11 draft, up to its release in June 2018, go to Part Two

 

References:

1 G93.3 Postviral fatigue syndrome, ICD-10 Browser Version: 2016. Accessed August 14, 2018

World Health Organization finally releases next edition of the International Classification of Diseases (ICD-11) Dx Revision Watch, July 25, 2018

3 8E49 Postviral fatigue syndrome, ICD-11 for Mortality and Morbidity Statistics (ICD-11 MMS) 2018 version for preparing implementation. Accessed August 14, 2018

4 8E49 Postviral fatigue syndrome, ICD-11 (Mortality and Morbidity Statistics) Maintenance Platform. Accessed August 14, 2018 The content made available here is not a released version of the ICD-11. It is a work in progress in between released versions.

5 ICD Revision Joint Task Force Meeting Report 22-22 January, 2017, Cologne, Germany. Page 39, Item 39: Chronic Fatigue Syndrome Advocacy Efforts. Accessed August 14, 2018

A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two. Dx Revision Watch, April 3, 2017

PDF: Proposal: Revision of G93.3 legacy terms for ICD-11, Dimmock & Chapman, March 27, 2017

7 Proposal: Revision of G93.3 legacy terms for ICD-11, Dr Tarun Dua, November 6, 2017

8 Response by Dimmock & Chapman to Dr Tarun Dua proposal of November 6, 2017, February 15, 2018

9 ICD-11 Reference Guide June 2018

10 Extract from Response to Dr Dua Proposal of November 6 2017: 4. Compliance with WHO standards and other considerations on relocation, Dimmock & Chapman, February 15, 2018

Australian Senate seeks clarifications from ICD Revision

Post #337 Shortlink: http://wp.me/pKrrB-4iV

UK Parliamentary Questions

In February and March, the Countess of Mar tabled Written Questions in the House of Lords seeking clarifications from the World Health Organization (WHO) around ICD Revision’s proposals for the ICD-10 “legacy” terms, postviral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome for ICD-11.

Both responses were as clear as mud and both refer to “chronic fatigue” – a term that exists neither in ICD-10 nor in ICD-11, and a term for which no proposal had been submitted.

You can view those Written Questions and Written Answers here:

HL5683
Written Question: 27 February 2017, Countess of Mar
Department of Health, Neurology

Written Answer: 07 March 2017, Lord O’Shaughnessy

HL6136
Written Question: 20 March 2017, Countess of Mar
Department of Health, Chronic fatigue syndrome

Written Answer: 28 March 2017, Lord O’Shaughnessy

Australian Senate also seeks clarifications

On March 29, Senator Griff (South Australian Senate) requested clarifications around the release date for ICD Revision’s proposals for the classification of the G93.3 legacy terms and the deadline for receipt of stakeholder comments.

A response was provided via the Minister of Health on April 28. These questions and responses will be recorded in the Australian Hansard.

In the context of the Australian Health Minister’s answers, please note the following and also the Notes beneath the copy of the Minister’s response:

1. When the G93.3 legacy terms were restored to the Beta draft on March 26 they were restored with this caveat:

While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD.
Team WHO 2017-Mar-26 – 12:46 UTC​

2. From the Beta draft Proposal Mechanism (for which registration is required):

Deadline Information for proposals:

Deadline in order to be considered for the final version is 30 March 2017

Comments by Member States and improvements arising as a part of the Quality Assurance mechanism will be included with deadlines later in 2017

3. In this November 2016 slide presentation by WHO’s, Dr Robert Jakob, the deadlines for Member State comments and improvements arising as part of the Quality Assurance mechanism were given as:

2017 Deadline Members State comments (31 May )
2017 Deadline Field testing / quality assurance (30 June)​

4. However, no public information has been available for the deadline for receipt of stakeholder comments in respect of proposals that met the March 30 deadline for consideration for inclusion in the final (2018) version.

Australian Senate Question and Response

SENATE QUESTION
QUESTION NUMBER: 435

DATE ASKED: 29 March 2017
DATE DUE TABLING: 28 April 2017

SENATOR Griff, asked the Minister representing the Minister for Health and Aged Care, upon notice, on 29 March 2017:

With reference to the World Health Organization (WHO) which is currently working on the latest edition of the International Classification of Diseases (ICD-11), and the Australian Collaborating Centre under the auspices of the Australian Institute of Health and Welfare which is coordinating Australia’s part in the latest edition:

1. Can the Minister request that the Joint Task Force responsible for steering the finalisation of the next edition of the WHO International Classification of Diseases to confirm the date by which the Topic Advisory Group for Neurology will release its proposals for the classification of the ICD-10 G93.3 legacy categories: post viral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome, for public scrutiny and comment.

2. Can the Minister confirm the date by which comments on their proposals will be required to be submitted for the consideration of the Joint Task Force.

3. Can the Minister detail what the Australian Government is doing in terms of research into and treatment for post viral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome.

SENATOR NASH – The Minister for Health has provided the following answer to the Honourable Senator’s question:

1. The World Health Organization (WHO) has released its classification of the International Classification of Diseases (ICD)-10 code G93.3 legacy categories (post viral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome) in ICD-11; they are classified in the same way as they were in ICD-10*. This classification is visible in the draft of the ICD-11 that is available for comment on the WHO’s ICD-11 website. WHO has advised that the final classification in the ICD-11 will be decided based on an extensive scientific review.

WHO has been managing the development of ICD-11 with the advice from advisory groups including the Topic Advisory Group for Neurology and the Joint Task Force. The Topic Advisory Group for Neurology ceased operations in October 2016.

2. WHO has advised that comments on ICD-11 can be provided by anyone at any time through the ICD-11 website. Whilst the deadline for such comments to be made for consideration by WHO in the finalisation of ICD-11 for its release in 2018 was 30 March 2017, comments can be made after that date for consideration for future updates of ICD-11.

3. The National Health and Medical Research Council (NHMRC) has provided $1.6 million of research funding towards myalgic encephalomyelitis, chronic fatigue syndrome and other related fatigue states (ME/CFS) collectively since 1999.

NHMRC has created an online pathway for community and professional groups to propose ideas for health research topics and questions, which NHMRC may develop into a targeted call for research to invite grant applications. A targeted call for research is a one-time request for grant applications to advance research in a particular area of health and medicine that will benefit Australians. A submission on ME/CFS had been received through this pathway and is under consideration.

NHMRC staff are also in communication with the ME/CFS Action Group to discuss ways evidence based diagnostic and treatment advice can be adapted and applied in Australian clinical practice.​

*Ed: The statement: “…[the terms] are classified in the same way as they were in ICD-10.” is not entirely correct. In ICD-10, chronic fatigue syndrome is not included in the Tabular List. It is listed in the Index, only, and points coders and clinicians to the G93.3 code. In the ICD-11 Beta listing for these terms, as restored (with a caveat) on March 26, both benign myalgic encephalomyelitis and chronic fatigue syndrome are specified as Inclusion terms to Postviral fatigue syndrome in both the ICD-11 Foundation and MMS Linearization (the ICD-11 equivalent of the Tabular List).

 

Notes:

This Australian Senate Response would appear to clarify the following:

a) that despite nearly 10 years in development and with ICD-11 MMS due to be finalized by the end of this year, ICD Revision has still not reached consensus over the proposed classification of these three ICD-10 terms.

b) that the terms’ current placement and hierarchy in the ICD-11 Beta (as restored to the draft on March 26) may change between now and the end of this year or between now and the first scheduled annual maintenance and update revision (which would be expected in 2019, if ICD-11 is released in 2018).

In order to be ready to present an initial version of ICD-11 to the WHA assembly in May 2018, the draft will need to be finalized by the end of 2017. See: Presentation with targets and timelines

If consensus were to be reached before the end of 2017, the Response does not clarify whether revised proposals would be entered into the Proposal Mechanism for public scrutiny and comment (or for how long) or would by-pass the Proposal Mechanism and be entered directly into the Beta draft as “Approved” and “Implemented” for incorporation into the final (2018) draft.

Or, having missed the March 30 deadline for consideration for inclusion in the initial 2018 release, whether any revised proposals released before the end of 2017 would need to be carried forward for consideration for inclusion in the first annual update in 2019, and if so, whether there would be any opportunity, at that stage, for stakeholder review and comment.

c) The response clarifies that the Topic Advisory Group for Neurology ceased operations in October 2016. Although it was understood that at some point the various Topic Advisory Groups would cease operating, the fact that TAG Neurology was no longer active was not communicated by Dr Robert Jakob or by the Joint Task Force to those of us attempting to obtain crucial information about proposals and deadlines via communications which, in some instances, the Chair of TAG Neurology (Dr Raad Shakir) was being copied into.

 

Two new ICD-11 advisory committees are expected to take over from the Joint Task Force:

Classification and Statistics Advisory Committee (CSAC) To perform as principal ICD-11 advisory committee, focusing mainly on ICD-11 MMS and its update proposals in mortality and morbidity

Medical and Scientific Advisory Committee (MSAC) To advise on scientific content for the ICD-11, of which advice is to be provided to CSAC

These advisory committees will be involved in the annual maintenance and update framework for ICD-11, once it has been released.

The Medical Scientific Advisory Committee (MSAC) was launched at the ICD-11 Revision Conference in 2016 and is expected to comprise approximately 6-10 experts selected by WHO. Dr Christopher Chute, who had chaired the ICD Revision Steering Group from 2010-2016, is a Co-Chair for the MSAC. Membership lists for MSAC and CSAC are not currently available and these new committees may still be in the process of being assembled.

It is possible that MASC and CSAC may be involved in final decisions about these terms, especially if consensus is not reached before the end of 2017.

 

Four day commenting window

The three terms were restored to the Beta draft on Sunday, March 26, when my long-standing proposals for exclusions under “Fatigue” were also partially approved and implemented, together with a somewhat opaque caveat posted by a Beta admin that prompted me to request clarification from Dr Jakob for its meaning.

Dr Jakob confirmed that the three terms had been restored to the Beta draft on March 26. But the restoration of the terms under parent, Other disorders of the nervous system was not viewable in the public version of the Beta until midday on Monday, March 27, because the public version of the platform had not been updated over the weekend and neither had the Print Versions or the Print Version of the Index.

This meant that having finally been restored to the draft, after a four year absence, the terms were viewable and open for comment by stakeholders for barely 4 days before the March 30 proposal and comment deadline was reached.

This also implies that several hundred stakeholder comments submitted after March 30 in response to the proposal submitted by myself and Mary Dimmock may have been submitted too late to be considered in the context of proposals that had met the March 30 deadline (which ours did) and may potentially be rolled forward for future consideration.

In February, I had asked Dr Robert Jakob and the Co-Chairs of the Joint Task Force three or four times if they would clarify by what date comments on proposals that met the March 30 deadline would need to be submitted – information that was vital for all public stakeholders planning to submit comment on Beta draft proposals – but these requests for clarification were sidestepped by both Dr Jakob and the Joint Task Force.

Stakeholders and stakeholder organizations should not be discouraged from submitting comments if they have not already done so.

The handling of these terms by ICD Revision (which included a four year period during which stakeholders were disenfranchised from the revision process – unable to scrutinize and comment on proposals because the terms had been inexplicably removed from the draft) and the cavalier and frequently obfuscatory manner in which stakeholder enquiries have been fielded, reflects very poorly on the WHO’s vision of an “open and transparent” revision process that is “inclusive of stakeholder participation” and on the WHO, in general.

PDF Questions tabled by Senator Griff (March 29, 2017) and Minister’s Response (April 28, 2017)


Key links

For a summary of our proposal and links for submitting comment via the Beta draft see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two

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