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

Chronic fatigue syndrome classified under Neurological disorder in SNOMED CT International Edition

Post #342 Shortlink: https://wp.me/pKrrB-4pK

SNOMED CT is a standardized electronic terminology system for recording and sharing symptoms, diagnoses, clinical findings, procedures etc. in primary and secondary care and across other health care settings.

Since April 2018, SNOMED CT UK Edition has been the mandatory terminology system for use in NHS primary care, replacing the Read Code (CTV3) terminology which is now retired. SNOMED CT UK Edition is scheduled for adoption across all NHS clinical settings by 2020.

In SNOMED CT terminology system, disease and disorder terms are not arranged in chapters, as they are in ICD-10 and ICD-11. Instead, terms are arranged within a hierarchical relationship of parent and children concepts (or supertypes and subtypes).

The SNOMED CT Concept term for Chronic fatigue syndrome is SCTID 52702003 Chronic fatigue syndrome (disorder). Benign myalgic encephalomyelitis; and Myalgic encephalomyelitis are included as Synonym terms.

Chronic fatigue syndrome has historically been located under the Parent Concept: Multisystem disorder.

Multisystem disorder Parent retired for January 2018 release

In 2017, SNOMED CT terminology managers decided that the Multisystem disorder concept term was not sufficiently specific for the purposes of their system and the term was inactivated (retired) for the January 2018 release.

There had been 90 Children terms under SCTID: 281867008 Multisystem disorder (disorder) and the retirement of this parent concept had implications for all of these 90 terms — not just for Chronic fatigue syndrome and its Synonym terms.

Many of these 90 Children terms were assigned under a more specific parent but a few, including Chronic fatigue syndrome, had no new parent assigned to them.

This presented an opportunity to request a more specific parent for Chronic fatigue syndrome.

In February 2018, a formal request and rationale for adding the supertype: Disorder of nervous system was submitted.

Chronic fatigue syndrome classified under Neurological disorder for July 2018 release

Following a peer review process, the addition of the parent: Disorder of nervous system for Chronic fatigue syndrome was provisionally approved for implementation in the next release, which has been finalized and published.

SCTID: 52702003 Chronic fatigue syndrome (disorder) is now classified under supertype SCTID: 118940003 Disorder of nervous system (disorder) in the July 2018 release of the SNOMED CT International Edition.

This change will be incorporated into the next update of the U.S. Edition (in September 2018), the UK Edition (in October 2018) and other National Editions, as they release their next updates.

Download a copy of the full report

PDF: Statement on SNOMED CT and Chronic fatigue syndrome

 


SNOMED CT International Edition Release for July 2018 (v20180731) was published on the public SNOMED CT browser on July 31, 2018

Media:

GP system updated to reflect M.E. as neurological, Action for M.E., August 01, 2018

NHS to update classification system to reflect that M.E. is neurological disease, ME Association, August 06, 2018

Update on SNOMED CT and Bodily distress disorder

Post #341 Shortlink: https://wp.me/pKrrB-4pG

Update on SNOMED CT terminology system and inclusion of Bodily distress disorder

The July 2017 Release for SNOMED CT International Edition included an undefined Bodily distress disorder term, assigned as a subtype under Parent: Functional disorder.

SNOMED CT does not regulate which concepts should or should not be used in clinical records, but makes concepts available within its system in response to submissions for potential inclusion.

It was possible that the World Health Organization (WHO) had requested the addition of the Bodily distress disorder term for alignment between SNOMED CT and new ICD-11 concept terms [1].

But given the concerns about Bodily distress disorder (BDD) and Bodily distress syndrome (BDS), it was important to establish what the SNOMED International terminology managers understood by the term “BDD” and to also establish who had submitted the request for its addition.

Download a copy of the full update

PDF: Statement on SNOMED CT and Bodily distress disorder


1 Bodily distress disorder, ICD-11 MMS Release June 2018

2 SNOMED CT International Edition Release for July 2018 was published on the public SNOMED CT browser on July 31, 2018

Comparison of Classification and Terminology Systems

Post #340 Shortlink: https://wp.me/pKrrB-4oG

We continue to see some confusion amongst ME and CFS patients, advocates and commentators around classification systems — what they are used for, whether they are mandatory for WHO member states, which terms are included in which systems and which countries use which versions.

In May, Suzy Chapman (DxRevisionWatch.com) and Mary Dimmock prepared a document to assist stakeholders in navigating the complexities of the disease classification and terminology systems.

 

Comparison of Classification and Terminology Systems

The purpose of this document is to summarize the key classification and terminology systems that are used internationally to capture information about disorders and diseases for the purposes of global mortality and morbidity tracking. These systems are also used for medical records, including EMRs (electronic medical records), in primary and secondary care.

Thumbnail

The most recent version of this document can be downloaded here Version 3 | July 2018

 

Document revision history:

Comparison of Classification and Terminology Systems Version 1

May 2018


 

Comparison of Classification and Terminology Systems Version 2

June 2018 – Updated to reflect release of an advance preview version of ICD-11 on June 18, 2018.


 

Comparison of Classification and Terminology Systems Version 3

July 2018 – Revised for clarity.

In Versions 1 and 2, we stated that the ICPC-2 Danish extension [1] included the term, Bodily distress syndrome. The document in reference [2] clarifies that whilst not included in the Danish extension, a diagnosis of functional disorder or a diagnosis of bodily distress syndrome can be coded for using the ICPC-2 P75 Somatoform forstyrrelse (Somatoform disorder) term.

1 ICPC-2 Danish extension
2 Funktionelle lidelser (Functional Disorders), Clinical guideline for general practice, Danish College of General Practitioners, 2013 (English translation, 2016). Page 8: What is the patient’s illness called?

 

World Health Organization finally releases next edition of the International Classification of Diseases (ICD-11)

Post #339 Shortlink: https://wp.me/pKrrB-4nC

(Key links from this post are also available on the ICD-11 2018 tab page.)

After 11 years in development and four extensions to the timeline, the World Health Organization (WHO) finally released a version of ICD-11 on June 18th.

Advanced preview

The WHO is presenting this June release as an “advance preview” to enable countries to start planning for implementation, prepare national translations and begin training health professionals.

ICD-11 MMS 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 1, 2022. After that date, member states can begin using the new edition for data reporting — if they are ready.

The WHO has bought itself a further three and half years in which to complete the preparation of implementation and support materials and finalize companion publications and other derivatives.

Dr Christopher Chute, chair of ICD-11’s Medical and Scientific Advisory Committee (MSAC), predicts that early implementers may require around 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.

There is no mandatory implementation date — member states will migrate to ICD-11 at their own pace and according to their countries’ specific timelines, requirements and resources.

Global adoption will likely be a patchy and prolonged process and for a period of time, WHO will be accepting data recorded using both ICD-10 and the new ICD-11 code sets.

No countries have announced implementation schedules. NHS Digital says:

NHS Digital – ICD-11 Launch

“…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.”

In the meantime, the mandatory classification and terminology systems for use in the NHS are ICD-10* and SNOMED CT UK Edition**.

*NHS currently mandating ICD-10 Version: 2015.
**Read Codes (CTV-2 and CTV-3) are retired. SNOMED CT became the mandatory terminology system for use in NHS primary care in April 2018. Secondary Care, Acute Care, Mental Health, Community systems, Dentistry and other systems used in the direct management of care of an individual are scheduled to adopt SNOMED CT as the mandatory clinical terminology before 1 April 2020.

Key links

ICD-11 launch News Release

Launch information and short videos: ICD-11: Classifying disease to map the way we live and die

A dedicated website for ICD-11 information has been launched: https://icd.who.int

ICD-11 Beta Draft becomes ICD-11 Maintenance Platform

The orange ICD-11 Beta drafting platform is renamed to the “ICD-11 Maintenance Platform” and will remain in the public domain as a “work in progress” between stable releases.

The content on the orange platform will change as the substantial backlog of earlier proposals and new proposals submitted since the June 2018 release are processed.

An approved proposal for an addition or other change won’t 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.

There is a current backlog of over 1000 proposals waiting to be processed. New comments and proposals will continue to be accepted (see Annex 3.7 of the Reference Guide for maintenance and update schedules and guidance on submitting new proposals).

(If you were registered with the Beta drafting platform for access to the Comments function and Proposals Mechanism your account will work for the Maintenance Platform and you will be able to access historical comments and proposals.)

The maintenance and update of ICD-11 will be advised by the Classifications and Statistics Advisory Commitee (CSAC); the Medical and Scientific Advisory Committee (MSAC); the Mortality Reference Group; the Morbidity Reference Group; and the Functioning and Disability Reference Group.

It is currently unclear in which year the first update cycle is anticipated to start, i.e., whether the next stable version would be released in January 2020, or in a later year.

The ICD Revision Topic Advisory Groups and sub working groups ceased operations in October 2016 and the Joint Task Force is expected to be stood down later this year.

The ICD-11 Maintenance Platform displays both the Foundation Component and the combined Mortality and Morbidity Statistics linearization:

https://icd.who.int/dev11/f/en#/

The ICD-11 for Mortality and Morbidity Statistics (ICD-11 MMS) 2018 version is on a new blue platform:

https://icd.who.int/browse11/l-m/en

This platform currently displays only the MMS Linearization codes, not the Foundation Component which contains all the ICD entities. As released in June 2018, the content is planned to remain stable until January 2019, in preparation for presentation at the May 2019 World Health Assembly.

There is a coding tool here:

ICD-11 Coding Tool Mortality and Morbidity Statistics (MMS) 2018:

https://icd.who.int/ct11_2018/icd11_mms/en/release#/

The ICD-11 Reference Guide (the equivalent of ICD-10’s Volume 2) is here:

https://icd.who.int/browse11/content/refguide.ICD11_en/html/index.html

(At the time of publication, there is no PDF version of the Reference Guide only an html version.)

What hasn’t been released yet?

Not all disorder “Descriptions” texts and other “Content Model” parameters have been populated and the full ICD-11 implementation package isn’t completed.

An updated ICD Revision information page states: “A suite of tools and functionality facilitate implementation and use of ICD-11.” But not all the tools and other materials listed under the Implementation Support tab are currently available.

The list also mentions “Specialty versions” but none of these are available; for example, the ICD-11 Clinical descriptions and diagnostic guidelines for Mental and Behavioural Disorders (the equivalent to ICD-10’s “Blue Book”) hasn’t been released yet.

This companion publication provides expanded clinical descriptions, differential diagnoses, diagnostic guidelines and codes for the categories in Chapter 06: Mental, behavioural and neurodevelopmental disorders including: “Essential (Required) Features, Boundaries with Other Disorders and Normality, and Additional Features sections. Additional sections (e.g., Culture-Related Features).”

Practitioners who have signed up to the Global Clinical Practice Network have had the opportunity to review and comment on drafts of the full clinical description and diagnostic guideline texts but drafts have not been available for public stakeholder review.

It’s not known whether this specialty mental disorder publication is planned to be released later this year or if the content cannot be finalized until after the ICD-11 MMS code sets have been ratified, in May 2019.

ICD-11 PHC: the revision of the 1996 publication: Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version (aka “ICD-10 PHC”) has not been released, either.

Drafts of the full texts for the disorder descriptions, as currently proposed for the 27 mental disorders for inclusion in ICD-11 PHC, are not available for public stakeholder scrutiny. There is no publicly available timeline for the finalization and release of ICD-11 PHC nor is it clear whether any additional field trials are in progress or have been recommended. NB: This publication will not be mandatory for use by WHO member states and it does not override the ICD-10 and ICD-11 code sets.

Additional materials

Brief Report from the Director-General: World Health Organization, EXECUTIVE BOARD EB143/13, 143rd session April 9, 2018, Provisional agenda item 5.2: International Statistical Classification of Diseases and Related Health Problems: update on the eleventh revision: http://apps.who.int/gb/ebwha/pdf_files/EB143/B143_13-en.pdf

Presentation Slides: ICD 11th revision, Member State Information Session Geneva, May 14, 2018, Dr John Grove, Director, Department of Information, Evidence, and Research, WHO and Dr Robert Jakob, Team Lead, Classifications, Terminologies and Standards, WHO https://dxrevisionwatch.files.wordpress.com/2018/05/icd11.pdf

Audio file from WHO Press Conference: June 14, 2018, Release of ICD-11 – the 11th revision of the International Classification of Disease, Dr Shekhar Saxena, Director, Department for Mental Health and Substance Abuse, WHO, Dr Robert Jakob, Team Lead, Classifications, Terminologies and Standards, WHO

Mp3 audio file [39:25 min]:

 

Presentation by Dr Michael First: Differences Between ICD-11 Classification of Mental & Behavioural Disorders and DSM-5. Nasjonal kompetansetjeneste ROP, Published July 20, 2018 [32:38 mins]

https://rop.no/roptv/hva-er-forskjellene-mellom-psykiske-lidelser-i-icd-11-og-dsm-5/

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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