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

It generated quite a bit of interest at the time:

https://dxrevisionwatch.com/2012/01...ation-cease-and-desist-v-dsm-5-watch-website/

Resources and media coverage: American Psychiatric Association “cease and desist” v DSM-5 Watch website



Psychotherapist and author, Gary Greenberg, also wrote several pages about it in his book on the APA, DSM and the development of DSM-5, "The Book of Woe":

https://www.garygreenbergonline.com/pages/currentbook.php

 

Thank you Esther12. We should also acknowledge Mary Dimmock's collaboration in ICD-11 proposals, rationales and responses.

 

ICD-11 remaining Timeline:

The Blue "Implementation" platform ( https://icd.who.int/browse11/l-m/en ) is expected to be frozen again in January 2019 for preparation for submission to the WHO Executive Board for their summary report.

Then ICD-11 is scheduled to be submitted in May 2019 for WHA adoption.

WHA's adoption of ICD-11 would not become effective until January 01, 2022.

The WHO's expectation is that Member States will start reporting after January 01, 2022 using the ICD-11 code sets but recognise that the implementation date for each Member State will vary according to individual countries' needs and resources.

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, WHO will be accepting and aggregating data reported using both the ICD-10 and the new ICD-11 code sets.

No countries have announced tentative implementation schedules.

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.





NHS Digital has yet to publish a tentative timeline for evaluation and eventual adoption of ICD-11 across all NHS clinical settings. In the meantime, the mandated terminology and classification systems for the UK NHS remain SNOMED CT and ICD-10 Version 2015.


The WHO does not like "clinical modifications" but has yet to formulate and publish policies on whether clinical modifications of ICD-11 will be permitted.

 

What are the consequences of having separate diagnostic codes for ME, CFS, and PVFS?

Somewhat confusingly, CFS would probably correspond to IOM criteria "ME/CFS". So a name change would be in order (to SEID?).

Would this lead to a split of research efforts? If so, which of the two (ME or CFS) would get more attention?

 

Thank you Suzy!

 

IMO, conflating CFS and ME definitions as though they are diagnostically equivalent is the source of alot of the research and clinical confusion we face. The only way to fix this is to make that diagnostic difference explicit and to push for greater diagnostic precision.

Many biomedical research groups are already using CCC or ME-ICC - at InvestinME this year, that's all I remember hearing and many US researchers use one of these. If I remember, the NIH intramural uses CCC plus post-infectious and the collaborative center grants require CCC or IOM.

Splitting off research from the BPS crowd and their crappy definitions would be a good thing

 

Having emerged, today, to disseminate news of this development with the Dua proposal, I shall be back in retirement, tomorrow.

 

Post #165 edited add link for new report on Dx Revision Watch:

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

https://dxrevisionwatch.com/2018/11...d-11-part-three-who-rejects-dr-duas-proposal/

 

Thank you so much Suzy

 

Resurfacing to confirm that the November 30, 2018 Release of the Swedish Edition of SNOMED CT was posted today.

This national edition release incorporates the change of parent for SCTID: 52702003 | kroniskt trötthetssyndrom | and terms under Synonyms.

I have added this information and a screenshot to the end of Post #162.

Also published today, the November 30 release of the Argentinian Edition.

 

Resurfacing briefly from retirement to confirm that the January 31, 2019 Release of the Australian Edition of SNOMED CT is now available.

This national edition release incorporates the change of parent for SCTID: 52702003 | Chronic fatigue syndrome | and terms under Synonyms that was approved and implemented for the July 2018 release of the SNOMED CT International Edition.

I have added this information and a screenshot to the end of Post #162.


The next national release to look out for will be the March 31, 2019 Netherlands Edition.

Although the SNOMED CT Concept code "Neurasthenia" had been retired from the core International Edition and from national editions some years ago, the Netherlands Edition retained "neurasthenie" under the list of Synonym terms to SCTID: 52702003 | chronischevermoeidheidssyndroom.

Pim Volkert (Terminology Co-ordinator, Nictiz, and lead for the Netherlands SNOMED CT National Release Centre) confirmed in October last year, that the term "neurasthenie" will be removed from the list of Synonyms terms for the Netherlands Edition's March 2019 release.

 

Thanks a lot Suzy.

 

Yes I came across this 'synonym' in a GP code directory at some point. Let's hope things will improve now that the Gezondheidsraad has basically endorsed the IOM conclusions on ME/CFS.

Is there any place I should watch for updates on this Dutch version?

 

If you go to the SNOMED CT International public browser platform here:

https://browser.ihtsdotools.org/

and accept the License terms.

Then look for "Local Extensions" on the landing page. Click on the blue tab for "Go browsing...Netherlands edition" - this will open the current release for the Netherlands Edition (the current release is dated 2018-09-30).

The next release is due at the end of March 2019.

Sometimes the national releases are posted on the day they are due, sometimes it may take a few days before they are posted. But I will update this thread as soon as the March 2019 release is available and also on Twitter.

If the retirement of the term "neurasthenie" has not been effected, as per Pim Volkert's response, for the Netherlands March release, I will raise this with him and return to this thread with an update.

 

A brief update on World Health Organization and World Health Assembly business:


The 144th Session (EB144) of the The World Health Organization Executive Board took place between 24 January – 1 February 2019:

https://www.who.int/news-room/events/executive-board-144th-session

"The Board meets at least twice a year; the main meeting is normally in January, with a second shorter meeting in May, immediately after the Health Assembly. The main functions of the Executive Board are to give effect to the decisions and policies of the Health Assembly, to advise it and generally to facilitate its work."


"The World Health Assembly is the decision-making body of WHO. It is attended by delegations from all WHO Member States and focuses on a specific health agenda prepared by the Executive Board. The main functions of the World Health Assembly are to determine the policies of the Organization, appoint the Director-General, supervise financial policies, and review and approve the proposed programme budget. The Health Assembly is held annually in Geneva, Switzerland."


The Seventy-second World Health Assembly is scheduled for 20 May – 28 May 2019.

These January Executive Board meetings generate a considerable number of documents.
EB144 Documentation is in the process of being uploaded to this WHO page: http://apps.who.int/gb/e/e_eb144.html

Not all documents are available yet. The definitive versions of the resolutions and decisions adopted, edited for the Official Records, will be made available in due course.


Selected documents:

A report by the Director-General on the status of ICD-11:

EB144/22 Eleventh revision of the International Classification of Diseases
Report by the Director-General, Provisional agenda item 5.9
http://apps.who.int/gb/ebwha/pdf_files/EB144/B144_22-en.pdf


Extracts:

Specialty-based versions
38. ICD-10 was accompanied by publications on application of the International Classification of Diseases to Dentistry, to neurology and to oncology, and on clinical descriptions and diagnostic guidelines for Mental and Behavioural Disorders and more.

39. Specialty versions of ICD-11 will be designed on the Foundation Component of ICD-11, thereby making their maintenance and coherence easier and more straightforward, enabling translations done on the common translation tool to be easily verified, and ensuring consistency.​

SC: Note that according to this presentation slide by WHO's Dr Geoffrey Reed, in September 2108, the Clinical descriptions and diagnostic guidelines for Mental and Behavioural Disorders (CDDG) (the ICD-11 equivalent of the ICD-10 "Blue Book") was planned to be finalized during Q3 and Q4 of 2018. There is no indication on the ICD-11 website whether this specialty version has been finalized yet or when a copy is planned for release.

(There is also no indication whether the draft text for the planned (non mandatory) 27 mental disorder ICD-11 PHC publication has been finalized or when a copy of the ICD-11 PHC is planned for publication.)

IMPLEMENTATION
46. ICD-11 will be published both electronically and in print. In the electronic version, information will be interlinked and visible in the relevant context. In the print version, the information will be divided into three volumes, as before: the tabular list, the reference guide, and the index. All three are needed to use ICD-11 correctly.

47. For coding purposes, the electronic index, in the format of online coding tool, will replace the print index as the reference for coding outcomes.*

48. Member States intending to produce national language versions of the eleventh revision should notify the Secretariat of their intentions. All translations should be done on, or integrated in, the ICD-11 translation platform, access to which will be provided by the Secretariat. In this way, multilingual versions can be made accessible, with consistency between versions ensured. Further, all language versions of ICD-11 that are on the translation platform can be automatically produced in all output formats, such as print files and electronic outputs; in addition, the translated version can be accessed through human or software interfaces. All translations on the platform can be accessed through the same browser, coding tool and programming interface.

49. As with the tenth revision, materials for the reorientation of trained coders for ICD-11 have been developed with the help of WHO collaborating centres for the Family of International Classifications. Training courses will be the responsibility of WHO regional offices and individual Member States. Materials for the basic training of new users of ICD-11 are being developed by WHO.

50. The release will be accompanied by an implementation package containing training materials, implementation guidance, transition tables, translation tools, information about governance and maintenance, and different formats of ICD-11 for incorporation into existing health-reporting systems.

FUTURE REVISION AND UPDATING OF ICD
51. The Health Assembly in resolution WHA43.24 (1990) endorsed an updating process within the 10-year revision cycle for ICD-10. During the extended period of use of the tenth revision (28 years rather than the planned 10 years), difficulties have been experienced owing to the lack of incorporation of updates by all Member States and the need for some major updates.

52. For ICD-11, broader outreach to Member State participation in the discussions and the formation of a dedicated Medical Scientific Advisory Committee are expected to overcome the issues experienced with ICD-10 and facilitate the future dissemination of updates for ICD-11 to users. With respect to statistical impact and based on the experiences with different levels and speeds of uptake of updates, any changes proposed during the lifetime of ICD-11 will be considered very carefully in relation to their impact on analyses and trends, in particular for coding rules and the four-character categories. Optional subcategories, index entries and improvements to user guidance will be updated more frequently than the four-character categories.**
​

*A demonstration version of the online Coding Tool for the Blue "Implementation" version of ICD-11 MMS can be played with here: https://icd.who.int/ct11_2018/icd11_mms/en/release#/


**See ICD-11 Reference Guide version: 01-02-2019 12:59 UTC for proposed update and revision cycles:

3.8 Annex: ICD-11 Updating and Maintenance
3.8.1 Background
3.8.2 Updating Cycle
3.8.3 Types of proposals for ICD-11-MMS maintenance
3.8.4 Proposal completeness
3.8.5 Proposal Timelines
3.8.6 Proposal Workflow
3.8.7 Things that cannot be done during the normal updating process​

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

On Page 10 of the document: Report by the Director-General on ICD-11 (EB144/22 Eleventh revision of the International Classification of Diseases)
is the Secretariat's proposed Draft resolution for ICD-11 implementation.

Below is a link for a document containing the text of that Draft resolution with proposed amendments from Member States:

EXECUTIVE BOARD EB144/CONF./9 144th session, 31 January 2019

Agenda item 5.9 Eleventh revision of the International Classification of Diseases

(Draft resolution proposed by the Secretariat with amendments from Member States)

http://apps.who.int/gb/ebwha/pdf_files/EB144/B144_CONF9-en.pdf

Extract:

Draft resolution proposed by the Secretariat with amendments from Member States

The Executive Board,

Having considered the report on the eleventh revision of the International Classification of Diseases,1

RECOMMENDS to the Seventy-second World Health Assembly the adoption of the following draft resolution:

The Seventy-second World Health Assembly,

(OP1 bis) Having considered the report contained in Document EB144/22 [European Union]

(OP2) DECIDES that the eleventh revision of the International Statistical Classification of Diseases and Related Health Problems shall come into effect on 1 January 2022; subject to transitional arrangements to be determined by the Director-General; and for a period of at least five years [European Union]

(...)

(OP4) REQUESTS the Director-General:

(2bis) to propose to the Seventy-fifth World Health Assembly through the Executive Board a process and timeline on the updated ICD 11 [European Union]

(2ter) to provide transitional arrangements from 1 January 2022 for at least five years, enabling Member States to compile statistics using previous revisions of the International Classification of Diseases, with translation to the eleventh revision through electronic tools [European Union]

(3) to report on progress in implementing this resolution, through the Executive Board to the Seventy-seventh World Health Assembly in 2024 through the Executive Board to the Eighty-second World Health Assembly in 2029. [European Union]

​

If/when the "definitive versions of the resolutions and decisions adopted, edited for the Official Records" are published on the EB144 webpages, I will post a link to the relevant document.

Suzy Chapman for Dx Revision Watch

 

There is another EB144 related document here. The link is included in the Director-General's Report on ICD-11.

Presentation slides:

Presentation by

Dr Robert JAKOB, Team Leader, WHO, Geneva, Classifications, Terminologies and Standards (ICD, ICD, ICHI, Verbal Autopsy)

https://icd.who.int/docs/norms-eb2019.pdf

Information session on ICD-11 Introductory words by ADG HMM Dr Lubna Alansari


This presentation discusses the status of ICD-11, timelines, maintenance and update process, make up of the CSAC Committee etc but also notes some recent CSAC and MSAC decisions, including the decision to retain the G93.3 legacy terms in the Diseases of the nervous system chapter:

Slide 22/31:


See Post #175 for my earlier report on this November 2018 decision by the CSAC/MSAC committees:

https://www.s4me.info/threads/updat...d-terminology-systems.3912/page-9#post-123205




The decision to Reject Dr Dua's proposal that the terms should be relocated under the Symptoms, signs chapter was accompanied by this Comment from the ICD-11 Proposal Platform admins "Team3 WHO":

https://icd.who.int/dev11/proposals...lGroupId=303c7493-554a-44c8-8e00-bd0c6c4cc6ef

In response to the many proposals on Chronic fatigue syndrome, the WHO Secretariat has conducted a vast amount of research.

Findings: The condition is characterized by chronic, profound, disabling, and unexplained fatigue and coinciding symptoms such as sleep problems or post-exertional malaise. There is no agreement on a reliable diagnostic symptom pattern. The etiology is still being discussed and there is no uniform treatment approach with reliable outcomes. The only constant is the lead symptom ‘fatigue’ that persists over time.

Decision: As a result of this study, the category ‘postviral fatigue’ that is the indexing target, will not be changed as currently there is no evidence to suggest a better place. The entity will retain its name and remain within the Nervous system chapter.

The Medical and Scientific Advisory Committee and the Classification and Statistics Advisory committee supported this decision.

Team3 WHO 2018-Nov-19 - 07:10 UTC​

 

Thanks Suzy. It looks as if you've helped us dodge quite a few bullets there. All the work you and Mary Schweitzer have done on this has been amazing (and to me, a little bewildering if I'm honest).

 

Amen!
@Dx Revision Watch Suzy you and Mary are absolute heroes! We all owe you a great deal. Goodness knows what horrors would have occurred without your vigilance & hard work. I know the battle isn't over yet but yeesh I'm very grateful for what you've achieved so far!

 

Thank you @Esther12 and @JemPD for your very kind words.


Just a quick note regarding the content of the WHO admin comment by "Team3 WHO" which had accompanied the rejection, in November 2018, of the Dr Dua proposal and the WHO's decision to retain the G93.3 legacy terms in the Diseases of the nervous system chapter.


There is no disease Description text included in the Blue ICD-11 MMS Implementation version (as released in June 2018):

https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/569175314







or in the Orange Maintenance platform version for any of the three ICD-10 G93.3 legacy terms:

https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/569175314






To the best of my knowledge, there are no current intentions or proposals by the WHO to insert a Description text for any of the three terms.

Although we were delighted, last November, that the Dr Dua proposal had been rejected and that the CSAC and MSAC committees support the WHO's decision to retain the terms in their legacy chapter, our own proposals submitted on March 27, 2017 have still not been processed.

I should still like to see "Benign" dropped and the other changes we had submitted for, in March 2017.

 

As some of you will be aware, there are no disorder/disease descriptions or diagnostic guidelines for any chapters of ICD-10 other than for Chapter V Mental and Behavioural Disorders.

ICD-10 Volume 1 includes only brief descriptions for the mental and behavioural disorder categories in Chapter V.

Two companion publications were developed for use with ICD-10 which expand on Chapter V disorder descriptions and also provide diagnostic guidelines. These companion publications are available as license free downloads:

The ICD-10 Classification of Mental and Behavioural Disorders Clinical descriptions and diagnostic guidelines (aka "The Blue Book"):
https://www.who.int/classifications/icd/en/bluebook.pdf

intended for mental health professionals for general clinical, educational and service use.​

The ICD-10 Diagnostic criteria for research (aka "The Green Book"):
https://www.who.int/classifications/icd/en/GRNBOOK.pdf

produced for research purposes and designed to be used in conjunction with the Clinical descriptions and diagnostic guidelines.​

For ICD-11, the WHO Department of Mental Health and Substance Abuse has developed an equivalent publication - the "Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders."


ICD-11 is scheduled for presentation to the World Health Assembly (WHA) in May, this year.

But WHA's endorsement of ICD-11 (assuming it does receive approval in May) will not come into effect until January 01, 2022. After this date, WHO member states can start using ICD-11 for reporting health statistics when their health systems have transitioned from ICD-10 to the new edition.

Although WHO will be encouraging member states to start preparations for migration, there is no mandatory implementation date and 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, WHO will be accepting data reported using both ICD-10 and the new ICD-11 code sets.

No countries have yet 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 system and mandatory terminology system for use in the NHS is ICD-10 (Version: 2015) and SNOMED CT UK Edition (mandatory adoption in primary care from April 2018; mandatory adoption across all NHS secondary care by 2020).



The development process for the ICD‐11 CDDG has been undertaken via the Global Clinical Practice Network:

https://gcp.network/en/about

ICD-11 Guidelines:

https://gcp.network/en/icd-11-guidelines

Practitioners and institutions who signed up to participate in the CDDG's development have been able to review and input into the draft texts. But no draft of the texts has been made available for stakeholder scrutiny and comment. So, for example, I have not had access to the full draft text for the Clinical descriptions and diagnostic guidelines for ICD-11's "Bodily distress disorder (BDD)" during any stage of the drafting process.

The CDDG guidelines include the "Essential (Required) Features, Boundaries with Other Disorders and Normality, Additional Features sections, Culture-Related Features."

Disorder descriptions for ICD-11 are less rigid than the criteria sets in DSM-5 and allow practitioners more flexibility to use clinical discretion when making diagnoses.

Note that the Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders should not be confused with the ICD-11 Primary Health Care (PHC) Guidelines for Diagnosis and Management of Mental Disorders (ICD-11 PHC), for which no timeline for finalization and release has been published by WHO. The ICD-11 PHC is a revision of the ICD-10 PHC (1996). Intended as a non WHO mandatory manual, the revised publication is proposed to comprise 27 mental disorder categories.



This paper in the February 2019 edition of World Psychiatry describes major changes to the structure of the ICD‐11 classification of mental disorders as compared to the ICD‐10; discusses new categories that have been added for ICD‐11 and presents rationales for their inclusion; and describes important changes that have been made in each ICD‐11 disorder grouping.

What the paper does not give is a firm release date for the CDDG - stating only that "WHO will publish the CDDG as soon as possible following approval of the overall system by the WHA."



Reed GM, First MB, Kogan CS, et al. Innovations and changes in the ICD-11 classification of mental, behavioural and neurodevelopmental disorders. World Psychiatry. 2019;18(1):3-19. Reed GM, First MB, Kogan CS, et al.

HTML: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313247/
PDF: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313247/pdf/WPS-18-3.pdf



(...)

Disorders of bodily distress and bodily experience

ICD‐11 disorders of bodily distress and bodily experience encompass two disorders: bodily distress disorder and body integrity dysphoria. ICD‐11 bodily distress disorder replaces ICD‐10 somatoform disorders and also includes the concept of ICD‐10 neurasthenia. ICD‐10 hypochondriasis is not included and instead is reassigned to the OCRD [Ed:Obsessive‐compulsive and related disorders] grouping.

Bodily distress disorder * is characterized by the presence of bodily symptoms that are distressing to the individual and an excessive attention directed toward the symptoms, which may be manifest by repeated contact with health care providers69. The disorder is conceptualized as existing on a continuum of severity and can be qualified accordingly (mild, moderate or severe) depending on the impact on functioning. Importantly, bodily distress disorder is defined according to the presence of essential features, such as distress and excessive thoughts and behaviours, rather than on the basis of absent medical explanations for bothersome symptoms, as in ICD‐10 somatoform disorders.



*I have embedded links to the ICD-11 Orange Maintenance Platform disorder descriptions (these are not included in the paper).

Note that DSM-5's Somatic symptom disorder is included under Synonyms to ICD-11's Bodily distress disorder.

Note also that Mary Dimmock and I are still waiting for our proposals for addition of exclusions for (B)ME and CFS under Bodily distress disorder to be processed.



SNOMED CT

The SNOMED CT Concept term SCTID: 723916001: Bodily distress disorder was added to the July 2017 release of SNOMED CT International Edition.

SNOMED International's classification leads confirmed that the term was added by the team working on the SNOMED CT and ICD-11 MMS Mapping Project as "an exact match for the ICD-11 term, Bodily distress disorder."

In ICD-11, Bodily distress disorder has three severity specifiers: Mild BDD; Moderate BDD; and Severe BDD, which are each assigned a unique code and a unique description/characterization text. It was submitted that including the three ICD-11 BDD severities might help clinicians and coders to distinguish between the SNOMED CT/ICD-11 Bodily distress disorder concept term and the similarly named, but differently conceptualized, Bodily distress syndrome (Fink et al. 2010), which has two severities. A request for addition of the three BDD severities was submitted and approved in early 2018 and the specifiers (Mild BDD; Moderate BDD; and Severe BDD) were added as Children under BDD for the July 2018 release of the International Edition.



When the WHO has released the CDDG, I will update this thread.


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

Resources:

Comparison of Classification and Terminology Systems, Version 3, Dimmock & Chapman, July 2018

Comparison of SSD, BDD, BDS, BSS in classification systems, Version 1, Dimmock & Chapman, July 2018

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