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

Discussion in 'General ME/CFS News' started by Dx Revision Watch, May 4, 2018.

  1. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Some good news to share:

    Important update on SNOMED CT terminology system and the classification of CFS and its Synonym terms


    The July 2018 Release for the SNOMED CT International Edition was published on the SNOMED CT Browser earlier today.

    I can now officially confirm the addition of the Supertype (Parent): Disorder of nervous system for Chronic fatigue syndrome and its Synonym terms.


    Brief context:

    For the January 2018 Release, CFS's parent concept: Multisystem disorder was retired.

    There had been 90 Children disease and disorder terms under SCTID: 281867008 Multisystem disorder and the retirement of this parent concept had implications for all 90 terms — not just for CFS and its Synonym terms.

    Many of these 90 disease and disorder terms were assigned a more specific parent but a few, including CFS, were not.


    In February 2018, a request and justification text for the addition of Supertype: Disorder of nervous system to CFS was drafted by Suzy Chapman and submitted by Sonya Chowdhury on behalf of Forward-ME.

    Following a peer review process, the addition of the parent: Disorder of nervous system for CFS was approved for implementation for the next release.

    I can now confirm that this change has been included in the July 2018 release (v20180731) of the SNOMED CT International Edition.

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


    Full report in this PDF (also in attachment):


    https://dxrevisionwatch.files.wordp...snomed-ct-and-chronic-fatigue-syndrome-v1.pdf

    Statement on SNOMED CT and Chronic fatigue syndrome August 2018



    Text of Request and justification for modification of SNOMED CT content in this PDF (also in attachment)*:


    *Justification includes link for document: Evidence Supporting a Classification of ME and CFS in the Neurological Chapter 2017, compiled by Mary Dimmock and texts extracted from Chapman and Dimmock joint proposal to ICD Revision, March 2017.

    https://dxrevisionwatch.files.wordp...ntent-for-snomed-ct-international-edition.pdf


    Screenshot from July 2018 Release (v20180731) accessed July 31, 2018:

    http://browser.ihtsdotools.org/?per...g/api/v1/snomed&langRefset=900000000000509007

    Chronic fatigue syndrome (disorder) SCTID: 52702003

    [​IMG]

     
    Last edited: Jul 31, 2018
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  2. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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

    This PDF document confirms the addition of the three severity specifiers under Children to Bodily distress disorder:

    https://dxrevisionwatch.files.wordp...snomed-ct-and-bodily-distress-disorder-v2.pdf

    Statement on SNOMED CT and Bodily distress disorder August 2018



    Bodily distress disorder for the July 2018 release (v20180731) of the International Edition:

    http://browser.ihtsdotools.org/?per...g/api/v1/snomed&langRefset=900000000000509007

    [​IMG]
     

    Attached Files:

    Last edited: Jul 31, 2018
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  3. Trish

    Trish Moderator Staff Member

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    I confess I had to look up SNOMED CT.
    I gather it is used in the UK, US and other countries' electronic health records. So it's very good news for us that CFS and its synonyms will be classified as Neurological rather than something much worse.
    Thank you @DxRevisionWatch for all your good work on this.
     
    Last edited: Jul 31, 2018
  4. Sarah

    Sarah Senior Member (Voting Rights)

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    @Dx Revision Watch - Thank you very much for submitting the request and justification for the Disorder of nervous system Supertype earlier in the year, Suzy. The inclusion is really good news. And just to take the chance to thank you once again for all your meticulous advocacy.
     
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  5. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Thank you, Trish.

    SNOMED CT is used in over 30 countries.

    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 for NHS before 1 April 2020.


    Previous reports on SNOMED CT are linked to in Post #16:

    https://www.s4me.info/threads/updat...tion-and-terminology-systems.3912/#post-74256
     
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  6. Nellie

    Nellie Senior Member (Voting Rights)

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    Thank you Suzy, an amazing achievement.
     
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  7. Amw66

    Amw66 Senior Member (Voting Rights)

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    Really good news. Many thanks @Dx Revision Watch , and Mary Dimmock.

    This is critically important in the context of the all expanding universe that is MUS and IAPT.

    Your persistence, clarity and patience are much appreciated- it takes a specific mindset to deal with these myriad of classifications, ( and i confess to not bring in possession of one).
    How great to bow out with this achievement.

    I hope you have a huge " to do " list to enjoy, as i imagine you will have a significant amount of time freed up soon .
     
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  8. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Absolutely excellent news, thanks so very much indeed Suzy and all others involved!
     
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  9. Daisybell

    Daisybell Moderator Staff Member

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    Huge thanks @Dx Revision Watch for all you have done on this. What you have achieved is so important.....
     
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  10. April

    April Established Member (Voting Rights)

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    Yes many many thanks for all your hard work.
     
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  11. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    I've received a query regarding the use of "(disorder)" in SNOMED CT.

    The number of unique concepts included in the SNOMED CT terminology system is huge (over 300,000 Concepts). The content includes not just unique concept terms and codes for diseases and disorders but also codes for findings, body structures, events, procedures, substances, social concepts etc.

    The term in brackets after a SCTID Concept identifies the type of concept.

    All diseases, disorders and syndromes are identified by "(disorder)" after their Concept name - also known as their "Fully specified name" (FSN).

    The convention for SNOMED CT is that Concept terms are listed at the top of the blue panel in the SNOMED CT browser in this format:

    22298006 | Myocardial infarction (disorder)
    56265001 | Heart disease (disorder)
    24700007 | Multiple sclerosis (disorder)
    310701003 | Behcet's syndrome (disorder)
    23502006 | Lyme disease (disorder)
    2702003 | Chronic fatigue syndrome (disorder)


    to distinguish the type of unique Concept from, for example, Concepts for

    xxxxxxx xxxxx (finding)

    xxxxxxxxx (procedure)

    xxxxxxxxx (substance)

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


    The Supertype Concept:

    http://browser.ihtsdotools.org/?per...g/api/v1/snomed&langRefset=900000000000509007

    118940003 | Disorder of nervous system (disorder) |

    has the following Parent Concepts:

    Parents


    Disease (disorder)
    >Finding by site (finding)
    >>Disorder by body site (disorder)
    >>>Disorder of body system (disorder)


    and under Synonyms:

    en Neurological disorder
    en Nervous system disease
    en Disorder of nervous system (disorder)
    en Disorder of nervous system


    It has 57 Children, arranged alphabetically, some of which also have Children terms under them (those marked with a blue arrow open up dropdowns for Children terms, some of which will also have Children terms under them):


    [​IMG]

     
    Last edited: Aug 1, 2018
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  12. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Thank you @Trish, @Sarah, @Nellie, @Amw66, @Daisymay, @Daisybell and @April for your kind words. We've known since late February that the submission had been approved; so it's been a long wait (5 months) until the content of the July Release was finalized for distribution to SNOMED CT Members, at the end of June, for implementation at the end of July.

    The International Edition releases its twice yearly updates on July 31 and January 31. The National Editions also release their updates twice yearly but on a staggered schedule, so it will be a few months until this change has been absorbed by all the National Editions. The U.S. Edition will be the first National Edition to incorporate this change, on September 01.
     
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  13. Daisymay

    Daisymay Senior Member (Voting Rights)

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    How secure is this placement, if they review so often can we assume CFS and synonyms are stable in this category for some time?
     
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  14. Daisymay

    Daisymay Senior Member (Voting Rights)

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    https://dxrevisionwatch.files.wordp...snomed-ct-and-chronic-fatigue-syndrome-v1.pdf

    "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. SNOMED CT codes have been mapped to ICD-10 codes and to ICPC-2e for interoperability."

    So this will surely make it more difficult for NICE or the psychs in the UK to claim it is a behavioural disorder?

    Mind you they ignored the WHO ICD coding for all these years, but just maybe, as this is new coding ie they can't claim it is an out of date anomaly, this will have some weight with say new NICE guidelines?
     
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  15. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    These twice yearly releases for the International Edition contain thousands of changes, corrections, additions of new terms etc. But the entire content (over 300,000 Concepts) is not reviewed every six months.

    For the July 2018 release:

    6494 new concepts were added with 32889 changes made to existing content.

    For the July 2017 release, 10770 new concepts were added with an additional 15993 changes made to existing concepts.

    (These changes and additions would be across all classes of concept - not just diseases and disorders.)


    Some of these changes will be as a result of internal decisions by the terminology managers to review specific concept terms (or content associated with specific terms), or to review specific hierarchical structures, or terminology added as part of the SNOMED CT to ICD-11 Mapping Project. External work groups may be assembled by SNOMED International to act as advisors to the classification managers on general medical or psychiatric concept terms.

    Others changes or additions approved for the terminology will have resulted from external requests for changes submitted by SNOMED CT National Release Centres or by other agencies, health professionals or other requesters.

    The National Release Centres can also submit for changes or additions that would be exclusive to their country's edition. For example, the UK Edition has a separately coded for Medically unexplained symptoms (finding) Concept term in addition to the Concept term Medically unexplained symptom (finding) that appears in the International Edition and in other National Editions.

    It's not possible to say whether in the future SNOMED CT managers might review CFS, specifically, or in response to new scientific evidence, or might receive external requests for changes.

    But it would be prudent to keep an eye on SNOMED CT in the future.

    Unlike ICD-11, there is no public platform where submissions for changes or additions to SNOMED CT International can be viewed and tracked through the review process for each six monthly update. There are deadlines for each six month period, for example, to be considered for the January 2019 release, requests for modifications or additions need to be submitted between 6 April 2018 and 3rd October 2018.

    To recap on the changes timeline:

    Prior to July 2015: CFS assigned under two parents: Mental disorder; Multisystem disorder
    July 2015 - January 2018: July 2015, Mental disorder parent removed from CFS. CFS assigned under parent: Multisystem disorder
    January 2018: Multisystem disorder parent concept inactivated (retired) for all 90 of its Children
    July 2018: CFS assigned under parent Disorder of nervous system
     
    Last edited: Aug 1, 2018
  16. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    One would hope so.

    Again, one would hope so.

    But yes, having PVFS, BME coded under (or in the case of CFS indexed to) G93.3 in ICD-10 for 20 odd years hasn't exactly provided protection for patients.
     
    Last edited: Aug 1, 2018
  17. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    For comparison:

    ICD-10 contains around 14,400 codes.

    ICD-11 contains around 55,000 codes.

    SNOMED CT contains over 300,000 Concepts across a number of classes, e.g, findings, disorders, body structures, events, procedures, substances, social concepts etc.
     
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  18. anniekim

    anniekim Senior Member (Voting Rights)

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    Although I appreciate it is good news that ME is back under neurological and not shunted under a mental disorder, I still don’t think it’s helpful to have CFS and ME as synonym. I appreciate many with a CFS diagnosis will actually meet ME criteria but not all.
     
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  19. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Like ICD-10, SNOMED CT doesn't include definitions, descriptions/characterizations or criteria for CFS, ME.

    SNOMED CT does not regulate which concepts should or should not be used in clinical records, but makes concepts available within its system.

    It does identify one term (CFS) as the "Fully specified name" and "Preferred term" and identifies the Synonym terms as "Acceptable" terms.


    I'm not sure whether you are saying you would have preferred a request for ME to become the "Fully specified name", with CFS in the Synonyms list as an "Acceptable" term. Or for two separate SCTID codes?


    We did not consider, at this point, that submitting a request for separate SCTID codes for Chronic fatigue syndrome and ME would be attainable, particularly since SNOMED CT codes are mapped to ICD-10 codes and there is only the one code (G93.3) in ICD-10 for all three terms.

    Edited to add: Although PVFS has been assigned a separate SCTID code in SNOMED CT, since July 2015, it still cross maps to G93.3.

    Nor did we consider, at this point, that a request for ME to be identified as the "Fully specified name" would have been attainable (especially given that proposals for ICD-11 were not resolved at the time of the submission, and remain unresolved).

    Therefore the focus was on obtaining the Disorder of nervous system supertype for the existing "Fully specified name" in the absence of the "Multisystem disorder" parent, rather than request the addition of a new parent plus additional changes to the hierarchy between the existing terms.

    If you are talking about two separate codes, then you would have the situation where they would both end up mapping across to ICD-10 G93.3, anyway. No new codes are going to be created for ICD-10, for which the last update will be in 2019.

    Rationales would also need to be provided for the basis on which the two Concepts would be separately coded for and discreetly characterized. SNOMED CT is used in around 34 countries and there is not yet universal acceptance of a single criteria set that distinguishes ME from CFS.*


    *"Definitions are only included [in SNOMED-CT] where there is international and inter-professional agreement..."
     
    Last edited: Aug 1, 2018
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  20. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Thanks for all the clarifications Suzy, appreciated.
     
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