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

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

I've created this thread specifically for reporting on the status of ICD-11 and for updates on changes to other classification and terminology systems.

An initial version of ICD-11 is scheduled for release in June. A WHO official has mentioned June 20, but WHO has yet to confirm the release date.


There has been a good deal of confusion recently around classification systems - what they are used for, which countries use which versions, and which terms are included in which systems.

Mary Dimmock and I have prepared a document to assist stakeholders in navigating the complexities of the various disease classification and terminology systems:


Comparison of Classification and Terminology Systems

Dimmock & Chapman, May 2018

Thumbnail



You can download the PDF here:

https://dxrevisionwatch.files.wordp...fication-and-terminology-systems-may-2018.pdf

or

http://bit.ly/ComparisonTable

I've also attached a copy.


Edited to add:

Document History: Updated versions:

Version 2 | June 2018
https://dxrevisionwatch.files.wordp...ication-and-terminology-systems-version-2.pdf

I have attached a PDF of Version 2 to this post.


Version 3 | July 2018
https://dxrevisionwatch.files.wordp...lassification-and-terminology-systems-v-3.pdf

I have attached a PDF of Version 3 to this post.

If you have downloaded an earlier version, please replace with Version 3.

 

Timeline for release of ICD-11

Although an initial version of ICD-11 is scheduled for release in June, the WHO won't be seeking WHA endorsement until May 2019.

The version of ICD-11 that will be published in June is for testing, evaluation and preparation for implementation according to countries' specific timelines and requirements.

There will be no WHO mandated date by which member states will be required to migrate from ICD-10 to ICD-11, though countries will be encouraged to start preparing.

Global implementation will be a prolonged and patchy process and for a period, data will be collected using both ICD-10 and ICD-11.

ICD Revision's, Dr Christopher Chute, predicts it will likely take early implementers around 5 years to evaluate and prepare their countries' health systems for transition to the new edition.

It's important to understand that no countries are going to be ready to move onto ICD-11 for several years.


Post-release

The version released in June 2018 is planned to remain stable until January 2019 in preparation for presentation for endorsement at the May 2019 World Health Assembly.

Proposals for changes to the ICD-11 Beta submitted before the end of March 2017 are taken into account for the release in June 2018.

After March 2017, only proposals resulting from quality assurance (field testing, reviews, member state comments) are taken into account.

An annual maintenance and updating process will address the more recent proposals.

(There are currently in the region of 1000 proposals for additional terms or for edits to existing content which have not yet been processed, including some that had met the March 2017 proposal deadline.)


NHS Digital has yet to issue a tentative timeline for evaluation and potential adoption of ICD-11 but one is expected to be available shortly.

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


Here are two graphics that cover and expand on the information above:

https://dxrevisionwatch.files.wordpress.com/2018/05/update-1-1-timeline.png



https://dxrevisionwatch.files.wordpress.com/2018/05/update-2-2-timeline.png

 

Attached is a brief, recent report from the WHO Director-General on the status of the ICD revision process:


World Health Organization
EXECUTIVE BOARD EB143/13, 143rd session 9 April 2018
Provisional agenda item 5.2: International Statistical Classification of Diseases and Related Health Problems: update on the eleventh revision

Report from the Director-General

http://apps.who.int/gb/ebwha/pdf_files/EB143/B143_13-en.pdf


Here's an extract:

https://dxrevisionwatch.files.wordpress.com/2018/05/11th-revision-dg-report2.png

 

The ICD-11 Beta draft was frozen on April 4, 2018 for quality assurance purposes.*

Dr John Grove (WHO Director, Information, Evidence and Research, ICD Revision Project Lead) has said that the draft is planned to be frozen again at the end of May.


Here's a screenshot from the April Frozen Release for the listing for PVFS, BME and CFS.

https://dxrevisionwatch.files.wordpress.com/2018/05/april-4-2018-freeze-1.png




In a forthcoming post, I will update on the current status of proposals for the three ICD-10 G93.3 terms.


*Registration with the Beta draft is required for access to the page for Frozen Releases: https://icd.who.int/dev11/frozenreleases

 

This past couple of years have seen a number of changes to key ICD Revision personnel and Revision committees.


Changes to key ICD Revision personnel:

Dr Bedirhan Üstün, who had steered the Revision Project for many years, left the WHO in July 2016.

Dr Ties Boerma (WHO Director, Department for Information, Evidence, and Research), who had been lead for the Revision Project, retired from WHO in March 2017.

Dr John Grove (from the U.S.A.) is the new Director, Department for Information, Evidence, and Research and took over from Dr Boerma as Revision Project lead in September, last year.

Anneke Schmider, is no longer involved with the ICD Revision Project.


Changes to key ICD Revision committees and work groups:

The Revision Steering Group (RSG) disbanded in October 2016.

The Joint Task Force (JTF) is currently planned to be stood down in October 2018.


Many of the ICD Revision work groups (known as Topic Advisory Groups or TAGs) and sub working groups have now ceased operations.

Topic Advisory Group for Neurology (TAG Neurology) ceased operations in October 2016.

Prof Raad Shakir (now retired from the NHS) chaired TAG Neurology. The extent of Prof Shakir's continued involvement in, or influence on ICD Revision is unclear.

The revision of the neurology chapter is the responsibility of the Department for Management of Mental and Brain Disorders, Department of Mental Health and Substance Abuse (Dr Shekhar Saxena; Dr Tarun Dua). Dr Tarun Dua had served as Managing editor and WHO secretariat to TAG Neurology. This department also has some oversight of the Symptoms, signs chapter.

Dr Geoffrey Reed (from the U.S.A.) continues as Senior Project lead for revision of Mental disorders. Dr Reed also has some oversight of the Symptoms, signs chapter.



New key ICD-11 committees:

Two new ICD-11 committees have been assembled:

1 The Medical Scientific Advisory Committee (MSAC):

Terms of Reference

The main role of the MSAC is to advise on scientific content for ICD-11. The MSAC will also be reviewing the backlog of proposals.

Dozens of new proposals and requests for changes to existing content continue to be submitted, daily, mainly by ICD Revision personnel and MSAC members.

MSAC membership:

The full membership of the MSAC has not been published. But the MSAC is chaired by Dr Christopher Chute (U.S.A. and former chair of the RSG). Dr Geoffrey Reed is a MSAC member. Dr Robert Chalmers is a MSAC member (UK Observer on the JTF and former chair of TAG Skin diseases).


2 The Classification and Statistics Advisory Committee (CSAC):

The Classification and Statistics Advisory Committee (CSAC) was launched in October 2017. It will replace the ICD-10 Update and Revision Committee (URC). The CSAC is composed of representatives from the WHO Family of International Classifications Network, including WHO Collaborating Centres from different countries, NGOs, other group Co-Chairs, and additional experts selected by WHO. The primary role of the CSAC is to support WHO in the maintenance and update of WHO classifications, particularly ICD-11. CSAC will consider proposals from within the Network and from the public, and will make final recommendations to WHO on those proposals, as well as on updates to user guidance and on other related subjects.

CSAC membership:

The full CSAC membership list has not been published. Dr Christopher Chute and Donna Pickett (CDC) are confirmed as members of the CSAC.

 

In a couple of days' time, I will report on the current status of proposals for the three ICD-10 G93.3 terms.

 

I've not even started to read all of this yet, it will take my brain time to try and take it all in, but I just wanted to thank you and Mary for all of this, which looks like an inordinate amount of work, thank you x

 

Thank you - an immense amount of work and careful attention to detail.

It is both sad and concerning that the potential impacts of this, for many illnesses, seem to have bypassed both media and charities.
The official language dosn' t help, but i feel it needs a bomb dropped soon to wake people up ....

 

What are channel 4 up to now that the Windrush scandal has broken - they seem to have a certain disrespect for authority - the greatest scandal of the 21st century looks set to widen to others...

 

Thank to to both you and Mary for the enormous amount of work you’ve both done, in keeping track of this and working to protect this community. We would have been dire straits without your diligence.

 

Update on current status of proposals for ICD-11 for the ICD-10 G93.3 terms:

Postviral fatigue syndrome
Benign myalgic encephalomyelitis
Chronic fatigue syndrome

Progression of PVFS, ME and CFS through the ICD-11 drafting platforms

Key events in the timeline: tracking the progress of the ICD-10 G93.3 legacy terms through the initial iCAT, Alpha and Beta drafting platforms, from May 2010 to May 2018.

Also available as a PDF:

https://dxrevisionwatch.files.wordpress.com/2018/05/pvfs-timeline-v2.pdf


Timeline

https://dxrevisionwatch.files.wordpress.com/2018/05/blue-bars-final-4-1.png


https://dxrevisionwatch.files.wordpress.com/2018/05/blue-bars-final-4-42.png


https://dxrevisionwatch.files.wordpress.com/2018/05/blue-bars-final-7-2.png


https://dxrevisionwatch.files.wordpress.com/2018/05/blue-bars-final-4-5.png


Whatever is in the Beta draft at the point at which the draft is frozen at the end of May should go forward to the initial release in June, though not all chapters may include “Description” texts.

After release, ICD Revision might potentially post new proposals for PVFS, CFS and ME via the Proposal Mechanism, which will remain open for submission of new proposals.


You can view the Beta draft here:

PVFS in the ICD-11 Foundation view

PVFS in the Mortality and Morbidity Statistics Linearization

To view or Comment on Proposals or to add Comments to the Beta listings you will first need to register here https://icd.who.int/dev11/Account/Register



Notes:

1 The retirement, in May 2010, of Parent: G93 Other disorders of brain as part of the restructuring of the Diseases of the nervous system chapter affected seven other ICD-10 category terms that had sat under the G93 parent block, in addition to G93.3 Postviral fatigue syndrome and its associated terms [1].


2 Part of the remit of the ICD Revision Topic Advisory Groups (TAGs), as set out in the Terms of Reference, had been to identify existing ICD-10 terms and new terms intended for inclusion in ICD-11 for which reviews of the literature might be considered and to undertake evidence reviews.

Mindful of this, in July 2015, Mary Dimmock and I had provided substantial evidence, reports and other background materials to Dr Robert Jakob and TAG Neurology to inform the Revision process.


3 ICD-11 precedence on relocation: General considerations for potential chapter relocations were discussed at a meeting of the Joint Task Force, in July 2016 [2].

According to the meeting Summary Report (5.2 Key discussion), a general principle was reiterated that:

"...in the absence of compelling evidence mandating a change, legacy should trump with regard to the question of moving certain conditions to new chapters...JTF members confirmed that continuity over time is desirable. Where there is a rationale for change, the changes can be accommodated for, but there was a question about how to justify the effort required to make the changes in data reporting systems in the absence of compelling information indicating that the change makes things better or more accurate."

Also in ICD-11 Reference Guide Draft, 2017-10-09, Page 20-21:

"3.4 Guiding Principles: Allocation of entities in the classification follows a set of rules that serve to maintain the structural and functional integrity of the classification. The core set of rules listed here is complemented by additional rules that address special cases or serve to ensure consistent user guidance (see annex). They are listed in order of priority.

1. No changes to the classification, including movement of categories or groups between chapters, without rationale and documented change in aetiology or prevention method." [3].


References:

1 iCAT Change Notes:
https://dxrevisionwatch.files.wordpress.com/2010/05/2icatnotegj92cfs.png
https://dxrevisionwatch.files.wordpress.com/2010/05/2icat06vineedingadecisiontobemadenote.png

2 Fourth Meeting of the JLMMS Task Force, Queensland, Australia, 11-14 July 2016
http://www.who.int/entity/classific....07.11-14_iSummaryMeetingReportQueensland.pdf

3 Reference Guide Draft 2017-10-09, Page 20-21
https://icd.who.int/dev11/Downloads/Download?fileName=refguide.pdf

 

Thank you, Simone. You are welcome.

I shall be taking a couple of days off, but the next post will update on ICD-11 and "Bodily distress disorder (BDD)" and on SNOMED CT and "Bodily distress disorder (BDD)".

 

Well deserved!
Unable to take in much of what you posted but I can see this is:
1) very important, and
2) an awful lot of work you're doing.
So just wanted to thank you and let you know how much that work is appreciated.

 

New PowerPoint presentation by WHO's Dr John Grove, Director, Department of Information, Evidence, and Research and Dr Robert Jakob, Team Lead, Classifications

ICD 11th revision

Member State Information Session Geneva, 14 May 2018

World Health Organization

Dr John Grove Director, Department of Information, Evidence, and Research
Dr Robert Jakob, Team Lead, Classifications


NB: Release date in June not yet confirmed, though I have seen June 20th mentioned by a WHO official.

Full presentation:

https://dxrevisionwatch.files.wordpress.com/2018/05/icd11.pdf


Selected slides:



NB: "All processed" - not the case. Five of my own proposals that had met the March 2017 deadline remain unprocessed. In all, around 200 proposals that had met the March 2017 deadline have still not been processed.






WHO currently intends to present ICD-11 to WHA next year, in May 2019.

(See penultimate screenshot)

"Step 4 will see a summary report that is submitted to the EB 144, January 2019. Based on the report the EB would recommend ICD-11 submission to the Health Assembly for adoption. Step 5 is submission of ICD-11 through the EB to the World Health Assembly in May 2019 to come into effect on 1 January 2022"













Full slide presentation here:

https://dxrevisionwatch.files.wordpress.com/2018/05/icd11.pdf

or on NHS Digital here:

https://hscic.kahootz.com/gf2.ti/f/762498/37081445.1/PDF/-/ICD11.pdf

 

I have four proposals that had met the 31 March 2017 deadline still unprocessed or partially processed, in addition to several more in relation to PVFS, BME, CFS that are known to be "on hold".


ICD-11 Beta draft Proposal Mechanism and Comment facility

https://icd.who.int/dev11/Contributions/RecentComments


Comment:

19-May-18 (09:05) Suzy Chapman

 

This is the first in a series of posts about SNOMED CT.

SNOMED International is a not-for-profit organization that owns, administers and develops the SNOMED CT clinical terminology system for electronic patient records.

Post #1 Introduction to SNOMED CT clinical terminology system

Post #2 Concept terms of interest to us
Post #3 Inclusion of ICD-11's Bodily distress disorder
Post #4 Change of Parent for Chronic fatigue syndrome and its Synonym terms
Post #5 Confirmation of change of Parent for CFS and its Synonym terms (to be posted after July 31, 2018)



SNOMED CT (Systematized Nomenclature of Medicine - Clinical Terms) is a multilingual clinical terminology system used by physicians and other health care providers for the electronic exchange of health information across multiple health care settings at the point of care.

SNOMED CT is considered to be the most comprehensive, multilingual clinical healthcare terminology in the world. It is designated by the U.S., UK, Canada, New Zealand, Australia and some other countries as the recommended clinical terminology system and is in use in over 30 countries.

It provides a standardized vocabulary of descriptive terms for clinical findings, symptoms, diagnoses, synonyms, treatments, procedures, pharmaceuticals, devices, administrative terms, social and environmental factors etc.


SNOMED CT SCTID codes:

Each disease or disorder concept, clinical finding, procedure etc is called a "Concept" and is assigned a unique concept code identifier number (the "SCTID").

For interoperability, SNOMED CT Concept codes have been cross mapped to other international terminologies, classifications and coding systems like ICD-10, the U.S.'s ICD-10-CM and ICPC-2e (International Classification of Primary Care, Second edition, Electronic edition).

For example, the SNOMED CT identifier for Chronic fatigue syndrome and its Synonym terms is SCTID: 52702003, which is cross mapped to ICD-10 G93.3.


SNOMED CT and ICD-11:

The cross map between SNOMED CT and the forthcoming ICD-11 is in progress and new disorder and disease terms that will be included in ICD-11 are gradually being incorporated into SNOMED CT for consistency between these two systems.


Two updates released every year:

SNOMED CT International Edition releases an updated version on January 31 and July 31, every year.


National Editions:

Some countries are licensed to manage their own extensions to the core SNOMED CT International Edition and they also release twice yearly updated editions, on a staggered schedule.

These National Editions incorporate all the changes, corrections and new terms from the most recent International release but may also include additional Concept terms for use specifically in that country's health system [See Note 1].


The structure of SNOMED CT:

For SNOMED CT, disease and disorder Concepts are not arranged in chapters according to body system, body site or aetiology, as they are in ICD-10 and ICD-11.

Instead, each disease Concept is assigned a hierarchy of Parent Concept terms. There may also be a number of "Children" terms located under a Concept term.


Access to SNOMED CT:

Health agencies purchase licenses to install the SNOMED CT products in their electronic record systems. But there is a free browser for the public to view.

You can view the SNOMED CT International Edition browser and a number of country extensions here:

http://browser.ihtsdotools.org/?


International Editions
International Edition (in English) (in Spanish);

Local Extensions:

Australian Edition;
Belgian Edition;
Canadian Edition;
Danish Edition;
Netherlands Edition;
Swedish Edition;
United Kingdom Edition; (browser hosted by the UK)
United States Edition;
Uruguay Edition.

(If presented with a License agreement - click "Agree" to continue for access to the free public browsers.)


A SNOMED CT National Release Centre is an organization within a Member country that is responsible for maintaining and releasing SNOMED CT content, including any National Extensions of SNOMED CT.

In the UK, NHS Digital is the designated SNOMED CT National Release Centre. The platform for the UK Edition is here:

https://termbrowser.nhs.uk/

(If presented with a License agreement - click "Agree" to continue for access to the free public browser.)



Read Codes (CTv3) retired in 2018:

For the UK's NHS, the Read Code (CTv3) terminology system has been the mandatory records system for use in primary care. The Read Code system is now retired.

From April 2018, SNOMED CT UK Edition became the mandatory terminology system for use in NHS primary care.

Some secondary care settings are already using SNOMED CT for their terminology system but implementation of SNOMED CT across all NHS clinical settings is planned by 2020.

The two mandatory terminology and classification systems for use in the NHS are now:

SNOMED CT (mandatory for use in primary care since April 2018; secondary care by 2020)

ICD-10.



SNOMED CT does not replace ICD-10:

In the NHS, SNOMED CT does not replace ICD-10 but they are used in combination.


According to NHS Digital's ICD-11 Overview document:

https://sway.com/ADbCPTecRhtlDb4U

"SNOMED CT and ICD serve different but related complementary purposes. In simple terms SNOMED CT is the vocabulary for use in an electronic patient record and is focussed on recording patient information at the time and point of care.

"ICD is used to report/summarise an episode of care after the event and in accordance with business rules focussing on what we need to 'count' for statistical and epidemiological analyses."​

Notes:

1 In addition to including SCTID Concept terms that are specific to a National Edition, National Editions may also retain SCTID Concepts that are retired (known as "Inactivation") from the International Edition.

They may also include Synonym terms which are not included in the International Edition. For example, the Netherlands Edition includes "neurasthenie" under Synonyms to "chronischevermoeidheidssyndroom", although the SCTID Concept term "Neurasthenia" was retired from the International Edition, some years ago.

Further examples: the UK National Edition includes three exclusive severity specifiers under Children to "Chronic fatigue syndrome": Mild chronic fatigue syndrome (disorder); Moderate chronic fatigue syndrome (disorder); Severe chronic fatigue syndrome (disorder). It also includes the terms: "Myalgic encephalitis" and "Myalgic encephalopathy" under Synonyms - synonym terms which are not included in the International Edition.


2 There has been a good deal of confusion recently around classification systems - what they are used for, which countries use which versions, which systems are mandatory for member state usage, and which terms are included in which systems. Mary Dimmock and I have prepared a document to assist stakeholders in navigating the complexities of the various disease classification and terminology systems:

Comparison of Classification and Terminology Systems, Dimmock & Chapman, May 2018


Next post in this series: Post #2 Concept terms of interest to us

 

This is the second in a series of posts about SNOMED CT:

Post #2 Concept terms of interest to us


Post #1 Introduction to SNOMED CT clinical terminology system
Post #3 Inclusion of ICD-11's Bodily distress disorder
Post #4 Change of Parent for Chronic fatigue syndrome and its Synonym terms
Post #5 Confirmation of change of Parent for CFS and its Synonym terms (to be posted after July 31, 2018)


These are some of the existing SCTID Concepts in SNOMED CT that are of interest to us and which will need continued monitoring in the future:


In SNOMED CT International Edition (release for January 31, 2018):

http://browser.ihtsdotools.org/

(If presented with a License agreement - click "Agree" to continue for access to the free public browser.)


SCTID: 52702003 | Chronic fatigue syndrome (disorder) and its Synonym terms

SCTID: 118940003 | Disorder of nervous system (disorder)

SCTID: 723916001 | Bodily distress disorder (disorder)

SCTID: 74732009 | Mental disorder (disorder)

SCTID: 161904006 | Unexplained symptoms continue (finding)

SCTID: 702537003 | Medically unexplained symptom (finding)


Notes:

1 SCTID: 702537003 | Medically unexplained symptom (finding) has no "s" on "symptom" and there is no Concept, "Medically unexplained symptoms" in the International Edition.

But the UK National Edition has both:

SCTID: 702537003 | Medically unexplained symptom (finding)

and

SCTID: 887761000000101 | Medically unexplained symptoms (finding)

which is a SNOMED CT Concept exclusive to the UK National Edition, as indicated in the browser by the Union Flag symbol.

I am intending to enquire for which release this was first added to the UK National Edition.


https://termbrowser.nhs.uk/

https://termbrowser.nhs.uk/?perspec...gRefset=999001261000000100,999000691000001104

(If presented with a License agreement - click "Agree" to continue for access to the free public browser.)

SNOMED CT United Kingdom clinical extension module (core metadata concept)
National Health Service realm language reference set (clinical part)

SCTID: 887761000000101 | Medically unexplained symptoms (finding)





SCTID: 887761000000101 is cross mapped to ICD-10 R68.8 Other specified general symptoms and signs


Next post in this series: Post #3 Inclusion of ICD-11's Bodily distress disorder

 

Brief update on the status of the June release of an initial version of ICD-11:

According to WHO's Dr John Grove (Director, Department for Information, Evidence, and Research), the Beta draft was expected to be frozen at the end of May in preparation for release of an initial version of ICD-11 in June. So we might anticipate a freeze today or tomorrow.

WHO has yet to announce the June release date but I will update this thread as soon as more information on the release package becomes available.

The version of ICD-11 that will be published in June is for testing, evaluation and preparation for implementation according to countries' specific timelines and requirements. The categories and code sets, as released in June, are planned to remain stable until January 2019, during which period Member States will be encouraged to submit feedback on user guidance and other documentation.

A final version of the ICD-11 MMS is currently scheduled for presentation to the World Health Assembly (WHA), in May 2019, for adoption to come into effect on 1 January 2022 [1].

There will be no WHO mandated date by which member states will be required to migrate to ICD-11, though countries will be encouraged to start preparing their health systems. No countries are going to be ready to transition from ICD-10 to ICD-11 for several years.


A brief report from the WHO Director-General, in April, states: "An implementation package comprising all materials necessary to support implementation of ICD-11 at country level will accompany the release in June 2018. It will contain 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 – for use of ICD-11 on paper, offline and online."

However, it is currently unclear how many of the stand alone companion publications, for example, the ICD-11 Clinical Descriptions and Diagnostic Guidelines for Mental and Behavioural Disorders, that expands on ICD-11 Chapter 06: Mental, behavioural and neurodevelopmental disorders, will be sufficiently advanced to release with this initial version.


References

1 WHO presentation to representatives of the Permanent Missions of Member State at WHO HQ in Geneva, May 14, 2018 in advance of the World Health Assembly (WHA) and Executive Board (EB) meetings: https://hscic.kahootz.com/gf2.ti/f/762498/37081445.1/PDF/-/ICD11.pdf

 

This is the third in a series of posts about SNOMED CT:

Post #3 Inclusion of ICD-11's Bodily distress disorder

Post #1 Introduction to SNOMED CT clinical terminology system
Post #2 Concept terms of interest to us
Post #4 Change of Parent for Chronic fatigue syndrome and its Synonym terms
Post #5 Confirmation of change of Parent for CFS and its Synonym terms (to be posted on July 31, 2018)


Summary: Inclusion of ICD-11's Bodily distress disorder in SNOMED CT







Expanded version: Inclusion of ICD-11's Bodily distress disorder in SNOMED CT

Most of the ICD-10 Somatoform disorders categories and Neurasthenia are being replaced for ICD-11 by Bodily distress disorder (BDD), a single new category which was added to the Beta draft in February 2012.

The BDD diagnostic construct, as described and characterized by the Somatic Distress and Dissociative Disorders Working Group (S3DWG) has been the only construct under consideration for the core ICD-11 edition since it was first added to the Beta draft, six years ago.

The conceptualization, characterization and criteria for the core ICD-11's Bodily distress disorder are very close to DSM-5's Somatic symptom disorder (SSD), and Somatic symptom disorder is listed under Synonyms to BDD.

Although the term "Bodily distress disorder" is often used interchangeably for the Fink et al (2010) Bodily distress syndrome (BDS) diagnostic construct, the core ICD-11's Bodily distress disorder is differently defined and characterized, has a very different criteria set and captures a different patient population [1].


Bodily distress disorder added to SNOMED CT terminology system in July 2017:

The International Edition of SNOMED CT releases two updates per year, on January 31 and July 31. Changes in the most recent International release (which may run to thousands of additional Concepts and changes to existing content) are subsequently incorporated into the various National Editions when they release their next updated versions.

In August 2017, I noticed that the SNOMED CT International Edition release for July 31 included an (undefined) Bodily distress disorder Concept term.

Concept: SCTID: 723916001 Bodily distress disorder (disorder) had been assigned under Parent: Functional disorder (disorder).

Forward-ME and a number of UK patient organizations were advised of this addition.


There is an MoU between SNOMED International and the WHO to work towards alignment between SNOMED CT content and the content proposed in ICD-11. New ICD-11 terms are gradually being incorporated into SNOMED CT releases and a coding cross map between the two systems is in progress.

It was conceivable that ICD Revision had submitted for the addition of Bodily distress disorder as part of the alignment process.

However, given the concerns around both BDD and BDS and with no definition or description text for Concept: SCTID: 723916001 Bodily distress disorder (disorder), it was important to determine what SNOMED International terminology managers understood by the term and to also establish who had submitted the request for its addition to the terminology system, and on the basis of what supportive evidence.


Following discussions with Action for M.E.'s Sonya Chowdhury and the Countess of Mar, it was agreed that an approach would be made to SNOMED International's terminology managers, on behalf of Forward-ME, to request specific clarifications regarding the conceptualization and provenance of this new Concept addition, and that a draft letter would first be circulated to the various Forward-ME organization reps for their review and approval.

The terminology leads were also provided with information about DSM-5's SSD, the differences between ICD-11's BDD and the Fink et al (2010) BDS diagnostic construct, and with other relevant information and concerns.

In October 2017, SNOMED International's Head of Terminology clarified that:

• Bodily distress disorder had been added by the team working on the SNOMED CT and ICD-11 MMS Mapping Project;

• The term had been added as "an exact match" for ICD-11 term, Bodily distress disorder;

• The term had not been added as the equivalent for the Fink et al (2010) Bodily distress syndrome disorder construct, which does not currently exist within SNOMED CT.

Having reviewed the information provided, the terminology managers decided that the SNOMED CT BDD Concept would be more accurately assigned under Parent: SCTID: 74732009 Mental disorder (disorder), for consistency with ICD-11's conceptualization and chapter placement.

Concept: SCTID: 723916001 Bodily distress disorder (disorder) was removed from under Parent: SCTID: 386585008 Functional disorder (disorder) and relocated under Parent: SCTID: 74732009 Mental disorder (disorder) for the International Edition's January 31, 2018 release.

This change has subsequently been incorporated into the various National Editions.

SNOMED CT terminology system does not have exclusion terms as are used in ICD-10 and ICD-11. So submitting a request for exclusions for PVFS, ME and CFS under SNOMED CT's Bodily distress syndrome wasn't an option.*

*Dimmock and Chapman submitted proposals for exclusions for PVFS, CFS and ME under ICD-11's Bodily distress disorder, in March 2017, which have not yet been processed.


Addition of BDD's three severity specifiers:

During further correspondence between the Countess of Mar (on behalf of Forward-ME) and the terminology managers, it was discussed what other safeguards might be put in place to mitigate the risk of confusion and conflation between SNOMED CT's BDD and the Fink et al (2010) construct, in clinical application and recording of statistics for data analysis.

In ICD-11, Bodily distress syndrome has three severities of psychobehavioural responses which are discretely coded for and each assigned a unique Description/characterization text.

It was advanced that inclusion within SNOMED CT of the three severity specifiers might assist clinicians, coders and other end users in distinguishing between the SNOMED CT/ICD-11 Bodily distress disorder concept and the similarly named, Bodily distress syndrome, as defined by Fink et al (2010), which has just two severities and which are differently characterized.

A request for addition of the three ICD-11 severity specifiers was submitted and approved and the specifiers (Mild bodily distress syndrome; Moderate bodily distress syndrome; and Severe bodily distress syndrome) are scheduled to be added to the July 31, 2018 release, under Children to Concept: SCTID: 723916001 Bodily distress disorder (disorder).


ICD-10:

There is no Bodily distress disorder in ICD-10. Other than correction of errors, the last update for ICD-10 is currently scheduled for 2019 (though member states will continue to record data using ICD-10 until they are ready to migrate to ICD-11 or to a clinical modification of ICD-11).

There are mappings between ICD-10 and SNOMED CT and in the SNOMED CT UK Edition, SCTID: 723916001 Bodily distress disorder (disorder) is mapped to ICD-10 F45.9 Somatoform disorder, unspecified [2].


References:

1 ICD-11 Beta draft: Rationale for Proposal for Deletion of proposed new category: Bodily distress disorder, Suzy Chapman, March 1, 2017: https://dxrevisionwatch.com/2017/03...oposed-new-category-bodily-distress-disorder/

2 SNOMED CT UK Edition browser: https://termbrowser.nhs.uk/

SNOMED CT UK Edition is released twice per year and consists of the International Edition content plus UK specific content provided within the UK Clinical Extension and for use in the UK only. Note that the NHS Digital SNOMED CT Browser is updated in line with the SNOMED CT UK Edition release schedule and will not always align with content in the most recent SNOMED CT International Edition release.

 

https://www.frontiersin.org/articles/10.3389/fpsyt.2018.00151/full

ORIGINAL RESEARCH ARTICLE
Front. Psychiatry, 14 May 2018 | https://doi.org/10.3389/fpsyt.2018.00151

A European Research Agenda for Somatic Symptom Disorders, Bodily Distress Disorders, and Functional Disorders: Results of an Estimate-Talk-Estimate Delphi Expert Study

Christina M. van der Feltz-Cornelis1,2*, Iman Elfeddali1,2, Ursula Werneke3, Ulrik F. Malt4,5, Omer Van den Bergh6, Rainer Schaefert7,8, Willem J. Kop9, Antonio Lobo10,11, Michael Sharpe12, Wolfgang Söllner13, and Bernd Löwe14 On Behalf of EAPM

Background: Somatic Symptom Disorders (SSD), Bodily Distress Disorders (BDD) and functional disorders (FD) are associated with high medical and societal costs and pose a substantial challenge to the population and health policy of Europe. To meet this challenge, a specific research agenda is needed as one of the cornerstones of sustainable mental health research and health policy for SSD, BDD, and FD in Europe.

Aim: To identify the main challenges and research priorities concerning SSD, BDD, and FD from a European perspective.

Methods: Delphi study conducted from July 2016 until October 2017 in 3 rounds with 3 workshop meetings and 3 online surveys, involving 75 experts and 21 European countries. EURONET-SOMA and the European Association of Psychosomatic Medicine (EAPM) hosted the meetings.

Results: Eight research priorities were identified: (1) Assessment of diagnostic profiles relevant to course and treatment outcome. (2) Development and evaluation of new, effective interventions. (3) Validation studies on questionnaires or semi-structured interviews that assess chronic medical conditions in this context. (4) Research into patients preferences for diagnosis and treatment. (5) Development of new methodologic designs to identify and explore mediators and moderators of clinical course and treatment outcomes (6). Translational research exploring how psychological and somatic symptoms develop from somatic conditions and biological and behavioral pathogenic factors. (7) Development of new, effective interventions to personalize treatment. (8) Implementation studies of treatment interventions in different settings, such as primary care, occupational care, general hospital and specialty mental health settings. The general public and policymakers will benefit from the development of new, effective, personalized interventions for SSD, BDD, and FD, that will be enhanced by translational research, as well as from the outcomes of research into patient involvement, GP-patient communication, consultation-liaison models and implementation.

Conclusion: Funding for this research agenda, targeting these challenges in coordinated research networks such as EURONET-SOMA and EAPM, and systematically allocating resources by policymakers to this critical area in mental and physical well-being is urgently needed to improve efficacy and impact for diagnosis and treatment of SSD, BDD, and FD across Europe.

Full paper: PDF: https://www.frontiersin.org/articles/10.3389/fpsyt.2018.00151/pdf

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At [23] paper references:

23. Frances A. The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill. BMJ (2013) 346:f1580. doi: 10.1136/bmj.f1580

for which I collaborated with Prof Allen Frances who had chaired the Task Force for DSM-IV.

At [26] paper references:

26. Chapman S. Rationale for Proposal for Deletion of the Entity: Bodily distress disorder. Proposal submitted by Suzy Chapman, Dx Revision Watch, via ICD-11 Beta draft Proposal Mechanism 2017 March. Available online at: https://dxrevisionwatch.com/2017/03...oposed-new-category-bodily-distress-disorder/


Note regarding reference [30]:

30. Rief W, Isaac M. The future of somatoform disorders: somatic symptom disorder, bodily distress disorder or functional syndromes? Curr Opin Psychiatry (2014) 27:315–9. doi: 10.1097/YCO.0000000000000089

Rief and Isaac are using the term, "bodily distress disorder" in this 2014 Editorial, while clearly what they are discussing is the Fink et al. (2010) BDS construct, as highlighted in my Rationale for Deletion of BDD from ICD-11.


Note regarding reference [69]:

69. Chowdhury S, Burton C. Associations of treatment effects between follow-up times and between outcome domains in interventions for somatoform disorders: review of three Cochrane reviews. J Psychosom Res. (2017) 98:10–8. doi: 10.1016/j.jpsychores.2017.04.013

Since there was confusion in another place, a few years ago: the co-author of this paper, Chowdhury S, is a researcher at Medical School, University of Aberdeen.

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See also Page 6:

4. Scientific initiatives: EAPM supports European COST Action Initiative Bernd Löwe https://www.psychosomatika-cls.cz/wp-content/uploads/2016/09/Newsletter_EAPM_December_2016.pdf


Core Outcome Domains for Clinical Trials on Somatic Symptom Disorder, Bodily Distress Disorder, and Functional Somatic Syndromes: European Network on Somatic Symptom Disorders Recommendations, Dec 2017 https://www.ncbi.nlm.nih.gov/pubmed/28691994

Edited to add additional links