Update to addition of Disorder of nervous system parent for Chronic fatigue syndrome and terms under Synonyms in SNOMED CT

Post #345 Shortlink: https://wp.me/pKrrB-4uk

In Post #342 (August 1, 2018), I confirmed that the addition of parent: Disorder of nervous system to Chronic fatigue syndrome was implemented for the July 31, 2018 release of the SNOMED CT International Edition.

The SNOMED CT Concept term for Chronic fatigue syndrome is SCTID 52702003 Chronic fatigue syndrome (disorder). Benign myalgic encephalomyelitis; and Myalgic encephalomyelitis are included in a list of terms under Synonyms.

SCTID: 52702003 Chronic fatigue syndrome (disorder) and the terms listed under Synonyms are now located under supertype SCTID: 118940003 Disorder of nervous system (disorder). This change to the International Edition is being incorporated into the national editions, as they release their next updates. These are released on a staggered schedule.

The rationale for requesting this additional supertype for Chronic fatigue syndrome and the terms listed under Synonyms is set out in this August 2018 document:

PDF: Statement on SNOMED CT and Chronic fatigue syndrome

Note that prior to July 2015, Postviral fatigue syndrome had been listed under Children to SCTID: 52702003 Chronic fatigue syndrome.

But for the July 2015 release, Postviral fatigue syndrome was removed from under SCTID: 52702003 Chronic fatigue syndrome and relocated under supertype: Post-viral disorder under: Post-infectious disorder and assigned the Concept code: SCTID: 51771007.

(A change that had not been requested by the Countess of Mar during her 2014-2015 engagement with SNOMED CT terminology managers for the removal of the Mental disorder parent. Provision of the rationale for relocating Postviral fatigue syndrome was not pursued by Forward-ME.)

Incorporation of addition of supertype Disorder of nervous system into national editions

SNOMED CT U.S. Edition incorporated the change for its September 01, 2018 release:

 

SNOMED CT Belgium Edition incorporated the change for its September 15, 2018 release:

 

SNOMED CT Danish Edition incorporated the change for its September 30, 2018 release:

 

SNOMED CT Netherlands Edition incorporated the change for its September 30, 2018 release:

Note on inclusion of “neurasthenie” in the Netherlands Edition: SNOMED CT International Edition and national editions used to include a Concept term SCTID: 192439005 Neurasthenia. This Concept was retired (Inactivated) a number of years ago. However, the Netherlands Edition retained the term “neurasthenie” under the list of Synonym terms. “Neurasthenie” is designated as an “Acceptable” term in the Netherlands Dutch language reference set (open “Details” tab to view Netherlands reference sets).

Details tab:

A Netherlands advocate has contacted Pim Volkert (Terminology Co-ordinator, Nictiz, and lead for the Netherlands SNOMED CT National Release Centre) with a request and rationales for consideration of the removal of the “neurasthenie” term, for consistency with the SNOMED CT International Edition and with the WHO’s ICD-10, which has an exclusion for G93.3 under F48.0 Neurasthenia. This request has been considered and accepted. I am advised that removal of the “neurasthenie” term is anticipated to be implemented for the March 2019 release of the Netherlands Edition.

 

SNOMED CT UK Edition incorporated the change for its October 01, 2018 release:

(Public browser hosted by NHS Digital. Browser can also be accessed from the landing page of the SNOMED CT International browser platform.)

Note: the UK Edition has three severity specifier options listed under “Children” that are specific to the UK Edition.

These are assigned the discrete codes: SCTID: 377181000000104 Mild chronic fatigue syndrome; SCTID: 377171000000101 Moderate chronic fatigue syndrome; and SCTID: 377161000000108 Severe chronic fatigue syndrome.

It has yet to be established from NHS Digital in which year these severity specifier options were added to the UK Edition, to what extent they are used, and by what means clinicians would determine which of the severities to apply.

The UK Edition includes the terms Myalgic encephalitis and Myalgic encephalopathy.

 

Updated to add screenshot of Canadian Edition

SNOMED CT Canadian Edition incorporated the change for its October 30, 2018 release:

 

Updated to add screenshot of Swedish Edition

SNOMED CT Swedish Edition incorporated the change for its November 30, 2018 release:

Note: the Swedish Edition includes a separately coded for Concept term:

SCTID: 55941000052101 | kronisk trötthet | [Chronic fatigue (finding)].

This is marked with the Swedish flag symbol to denote that this SNOMED CT Concept term is exclusive to the Swedish Edition. It can be viewed here:

 

Updated to add screenshot of Argentinian Edition

SNOMED CT Argentinian Edition incorporated the change for its November 30, 2018 release:

 

Incorporation into other national editions

The next release of the Uruguay Edition is scheduled for December 15.
The next release of the Australian Edition is scheduled for December 30.

If your country is a member of SNOMED International but does not have a publicly accessible browser hosted on the International Edition platform or hosted on its own platform, please refer to your country’s SNOMED CT National Release Centre website for the release schedule.


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

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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.

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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?

 

Changes to SNOMED CT and Read Codes (CTV3) for CFS, ME and PVFS

Post #327 Shortlink: http://wp.me/pKrrB-4aD

Recent changes to SNOMED CT for CFS, ME and PVFS

  • Correspondence between Forward-ME and UK Health and Social Care Information Centre
  • SNOMED CT retires Mental disorder parent for Chronic fatigue syndrome and ME
  • Projected changes to April 2016 release of Read Codes Clinical Terms Version 3 (CTV3)
  • Read Codes system to be phased out as part of wider SNOMED CT implementation

In addition to ICD-10, a number of terminology and electronic health and medical record systems are used in the UK in primary, secondary, and health and social care clinical settings, which include:

OPCS-4 (classification of Surgical Operations and Procedures)

SNOMED CT (Systematized Nomenclature of Medicine – Clinical Terms, a comprehensive, multilingual clinical terminology system)

Read Codes (a coded thesaurus of clinical terms for recording patient findings and procedures in health and social care IT systems across primary and secondary care, e.g. GP surgeries and reporting of pathology results).

The National Information Board (NIB) has specified that all primary care systems adopt SNOMED CT by the end of December 2016 and that SNOMED CT is to be used as the single terminology in all health care settings in England, with a projected adoption date for the entire health system of April 2020 [3].

You can access a public SNOMED CT browser here: IHTSDO browser

This is an online browser and does not require any software to be downloaded. You will need to accept the license and then select for the UK “Local Extension” of SNOMED CT. Click on the “Search” tab to enter clinical terms.

The SNOMED CT International Edition and “Local Extensions” for a number of other countries, including the US, are also available via the browser. All editions release new updates twice a year, on a staggered schedule. The Release schedule for the UK Extension is April and October.

Read Codes system to be retired

The Read Codes system of clinical terms has been used in the NHS since 1985. As part of the adoption of SNOMED CT in primary care, Clinical Terms Version 3 (CTV3) is being deprecated.

More information on the phasing out of Read Codes, here:

Retirement of Read Version 2 and Clinical Terms Version 3

Click link for PDF document Retirement Schedule

There was no new release for CTV3 issued in October, but the April 2016 release is scheduled for Friday, 18th March 2016. The last release of CTV3 will be published in April 2018.

How have CFS and related terms been listed within SNOMED CT and CTV3?

SNOMED CT

Prior to July 2015, all editions of SNOMED CT had the following listings for CFS, ME and PVFS:

Chronic fatigue syndrome (with ME – Myalgic encephalomyelitis and several other related and historical terms listed under Synonyms) was assigned two parent disorder classes: Mental disorder, and Multisystem disorder.

Postviral fatigue syndrome was listed under Children to Chronic fatigue syndrome.

Read Codes (CTV3)

The twice yearly Read Codes releases (April and October) are available only to license holders but the codes can be viewed through this public resource (caveat: it is unclear how often this NCBO BioPortal ontology resource is updated with new releases for individual ontology systems):

See: BioPortal Xa01F

For CTV3, Xa01F Chronic fatigue syndrome (with ME – Myalgic encephalomyelitis and PVFS – Postviral fatigue syndrome under Synonyms) is listed, hierarchically, under two parent disorder classes: as a Sub Class of both Neurasthenia, under parent: Mental health disorder, and as a Sub Class of Neurological disorder.

See: http://purl.bioontology.org/ontology/RCD/Xa01F

Mental health disorder > Neurotic disorder > Somatoform disorder > Neurasthenia > Chronic fatigue syndrome

and

Neurological disorder > Chronic fatigue syndrome

See also the Visualization tab for a diagrammatic representation of dual parentage:

http://bioportal.bioontology.org/ontologies/RCD?p=classes&conceptid=Xa01F#visualization

Correspondence between Countess of Mar and UK Health and Social Care Information Centre

Forward-ME is an informal group for ME charities and voluntary organizations, chaired by the Countess of Mar, who also serves as Co-chair to the All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME).

Between November 2014 and June 2015, Lady Mar was in correspondence with Mr Leon Liburd, Senior Support Analyst Systems and Service Delivery, and Ms Elaine Wooler, Advanced Clinical Terminology Specialist, UK Health and Social Care Information Centre.

Their correspondence (in reverse date order) was published on the Forward-ME website in June and can be read here Correspondence re SNOMED added June 2015

or open PDF here on Dx Revision Watch

Click link for PDF document  Correspondence re SNOMED

Changes to SNOMED CT

As a result of these exchanges, Lady Mar was advised that the relationship between the entry for 52702003 Chronic fatigue syndrome and the Mental disorder parent had been retired. In future editions, Chronic fatigue syndrome would be listed under the single parent, 281867008 Multisystem disorder.

See here

Additionally, 51771007 Postviral fatigue syndrome was being removed as a subtype of 52702003 Chronic fatigue syndrome (disorder) – though no rationale for this specific decision appears to be provided within the correspondence.

See here

[So 51771007 Postviral fatigue syndrome would be no longer be listed as a sub class under Children to 52702003 Chronic fatigue syndrome but directly under two parents: 281867008 Multisystem disorder and 123948009 Post-viral disorder.]

These changes were effected in the July 2015 release for the International Edition (Release 20150731).

They were subsequently incorporated into the September 2015 US Extension (Release 20150901), the October 2015 UK Extension (Release 20151001) and the November 2015 Swedish Extension (Release 20151130). It is expected that other country Extensions will also reflect these changes in their forthcoming releases.

Within the correspondence, on 11 November 2014, Mr Leon Liburd had also advised Lady Mar:

“It is also noted that the corresponding representation in the UK’s Clinical Terms Version 3 terminology product Xa01F | Chronic fatigue syndrome is classified as both a Neurological disorder and a Mental health disorder. As such, any conclusions emerging from the SNOMED CT discussions would also be reflected in the CTV3 UK product.”

Clarification re CFS and CTV3

In November, I contacted the UK Health and Social Care Information Centre for clarification of how CFS and its various Synonyms are currently listed within CTV3.

On 20 November, I was advised by Karim Nashar, Terminology Specialist, UK Terminology Centre, Health and Social Care Information Centre, that:

“[Xa01F | Chronic fatigue syndrome was being moved] under a single supertype 281867008 | Multisystem disorder (disorder) as to reflect the SNOMED correction in CTV3″

and that this change should be reflected in the April 2016 CTV3 release.

As noted above, Clinical Terms Version 3 (CTV3) is being deprecated and the last release of CTV3 will be published in April 2018.

The ICD-11 Beta draft and proposed classification of the G93.3 legacy terms

In June, WHO’s Dr Robert Jakob had told me that if TAG Neurology’s proposals and rationales for the G93.3 legacy terms were not ready for public release in September, he projected their release by December, latest (see towards end of Post #324).

No proposals were released in September and none in December. Eight years into the revision process and stakeholders still don’t know how ICD Revision proposes to classify the ICD-10 G93.3 legacy terms for ICD-11.

On 28 December, I called again, via the ICD-11 Beta Comments mechanism, for these terms to be restored to the public version of the Beta drafting platform.


 References

1 UK Terminology Centre (UKTC): http://systems.hscic.gov.uk/data/uktc/

2 SNOMED CT: http://systems.hscic.gov.uk/data/uktc/snomed

3 NIB document ‘Personalised Health and Care 2020: A Framework for Action’:
https://www.gov.uk/government/publications/personalised-health-and-care-2020

4 IHTSDO browser: http://browser.ihtsdotools.org

5 Retirement of Read Version 2 and Clinical Terms Version 3: http://systems.hscic.gov.uk/data/uktc/readcodes

6 NCBO BioPortal Read Codes (CTV3) Xa01F Chronic fatigue syndrome

7 Forward-ME Correspondence re SNOMED added June 2015

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ICD-11 Revision releases External review and Response: shifts projected WHA adoption to 2018

Post #321 Shortlink: http://wp.me/pKrrB-44N

Update: August 6, 2015

ICD Revision has now published a revised Project Plan and Communication Schedule:

ICD Project Plan 2015 to 2018

 

As previously posted

2017

And so it goes on…

The revision of ICD-10 and development of ICD-11 kicked off in April 2007. The original projected WHA adoption date was 2011/12 [1].

Then a shift to 2015, then to 2017.

WHO has just kicked the can further down the road to May 2018.

In July 2014, the World Health Organization (WHO) Office of the Assistant Director General, Health Systems and Innovation, posted a call for expressions of interest from suitable contractors to conduct an interim assessment of the 11th Revision for International Classification of Diseases (ICD).

External assessment was prompted by concerns raised by WHO Member States, UN Statistical Commission and other stakeholder organizations about the status of the revision and the utility of the ICD-11 product.

The External review of ICD-11 Revision’s progress has now been completed.

Last week, WHO quietly released a report on the status of the ICD revision process, its management and resources, the feasibility of meeting its goals and timelines, and its fitness for purpose.

The reviewers’ assessment and recommendations can be read here: External report

Read WHO’s initial response to the report’s findings and the actions ICD Revision proposes to take here: WHO Response to External Report

WHO says:

WHO welcomes the constructive messages of the Report of the ICD-11 Revision Review. WHO is initiating the second phase of the revision process, acting immediately on the Review’s recommendations.

A revised workplan will be formulated before the end of June and submitted for approval to the RSG-SEG. During 2015 the WHO secretariat will be strengthened in terms of project management, communication of progress and plans, documentation and transparency of decision-making and classification expertise, as recommended by the reviewers.

As I predicted, a further shift in the development timeline from WHA adoption in May 2017 to May 2018 is proposed, along with other measures.

References

1 Exhibit 1 WHO Letter August 2007
Letter Saxena, WHO, to Ritchie, IUPsyS (International Union for Psychological Science), August 2007

2 External Review ICD-11 (Consultancy Interim Assessment of 11th ICD Revision, January – March 2015)

3 WHO Response to External Review of ICD-11 (Initial WHO response to the report of the external review of the ICD-11 revision,Department of Health Statistics and Information Systems, May 12 2015)

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