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

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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?

 

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

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

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

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

Advanced preview

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

ICD-11 MMS is scheduled for presentation at the World Health Assembly (WHA) in May 2019 for adoption by member states, but WHA endorsement won’t come into effect until January 1, 2022. After that date, member states can begin using the new edition for data reporting — if they are ready.

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

Dr Christopher Chute, chair of ICD-11’s Medical and Scientific Advisory Committee (MSAC), predicts that early implementers may require around five years to prepare their countries’ health systems for transition. Member states using a “clinical modification” of ICD are likely to take longer to develop, test and roll out a country specific adaptation.

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

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

No countries have announced implementation schedules. NHS Digital says:

NHS Digital – ICD-11 Launch

“…No decision has been made for the implementation of ICD-11 in England, however NHS Digital plan to undertake further testing of the latest release and supporting products that will inform a future decision.”

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

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

Key links

ICD-11 launch News Release

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

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

ICD-11 Beta Draft becomes ICD-11 Maintenance Platform

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

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

An approved proposal for an addition or other change won’t immediately be reflected in the released version of the ICD-11 MMS but carried forward for eventual incorporation into a later release, according to the update cycle for that particular class of change.

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

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

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

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

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

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

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

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

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

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

There is a coding tool here:

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

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

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

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

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

What hasn’t been released yet?

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

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

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

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

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

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

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

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

Additional materials

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

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

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

Mp3 audio file [39:25 min]:

 

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

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

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)

12 Point Skinny on ICD-11

Post #305 Shortlink: http://wp.me/pKrrB-3Rm

Update at May 15, 2014: Somatization disorder, listed as a uniquely coded child category under parent, Bodily distress disorder, has been removed from the Beta draft Linearizations since publishing the update on May 9. Instead, the ICD-10 legacy terms, somatoform disorders and Somatization disorder are both now listed under Synonyms to Bodily distress disorder and also listed as Index Terms. The three severity specifiers for BDD, (Mild, Moderate, Severe) remain.

Neurasthenia, listed as a child category under parent, Mental and behavioural disorders, has been removed from the Linearizations and is not listed in the PDF for the print version of the Alphabetical Index.

Update at May 9, 2014: Three uniquely coded severity specifiers (Mild, Moderate, Severe) have now been added back as child categories to Bodily distress disorder but Somatization disorder remains as a uniquely coded child category to BDD.

As no new posts will be added to the site from April, I leave you with my 12 Point Skinny on ICD-11 first published in February.

The version below has been updated to reflect changes since February.

A brief summary of how things stand in the Beta drafting platform at March 31, 2014.

If reposting, please repost unedited, with the publication date and source URL:

http://wp.me/pKrrB-3Rm

Dx Revision Watch’s 12 Point Skinny on ICD-11:

1. The ICD-10 terms, PVFS, BME, and CFS, are not currently displaying in the public version of the Beta drafting platform under any chapters, either as ICD Title terms, or as Inclusion terms to ICD Title terms, or under Synonyms to ICD Title terms.

2. On Feb 12, 2014, @WHO Twitter admin stated: “Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11”. This position was additionally confirmed by Mr Gregory Härtl, Head of Public Relations/Social Media, WHO.

3. Other than this position, WHO/ICD Revision has yet to clarify how it does propose to classify PVFS, BME, and CFS within ICD-11, in terms of intentions for specific chapter locations, parent classes (including any proposals to assign any of these terms to multiple parentage), hierarchies, Definitions text and other “Content Model” descriptive parameters.

4. Since June 2013, multiple requests have been made to WHO/ICD Revision to account for the current absence of these terms from the public version of the Beta draft and to issue a statement clarifying intent. On March 18, 2014, a joint letter was sent to key WHO/ICD Revision personnel [1].

5. Two separate working groups have been appointed by WHO/ICD Revision that are advising on the revision of the Somatoform disorders categories.

6. In 2012, two sets of emerging proposals were published – one for a tentative construct called Bodily distress disorder (BDD), and one for a divergent construct, tentatively called Bodily stress syndrome (BSS).

7. In 2012, the emerging proposals by the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (the Gureje led S3DWG sub working group) for its Bodily distress disorder (BDD) concept had described an SSD-like construct with criteria based on psychobehavioural responses [2].

8. In 2012, the emerging proposals by the PCCG (the Goldberg led ICD-11 Primary Care Consultation Group) presented an alternative Bodily stress syndrome (BSS) construct [3].

This proposal drew heavily on Fink et al’s Bodily Distress Syndrome (BDS) disorder model, requiring symptom patterns from body systems to meet the criteria. But the PCCG proposed to incorporate some SSD-like psychobehavioural responses, which do not form part of Fink’s BDS criteria – attempting a mash-up between two divergent constructs or disorder models [4].

9. The Definition for Bodily distress disorder (BDD) that is inserted into the Beta drafting platform [5] is based on the disorder description wording in the 2012 Gureje, Creed BDD paper, which had described an SSD-like construct [3].

10. BDD had a child category, Severe bodily distress disorder. This is now removed from the public Beta draft. Instead, ICD-10’s Somatization disorder has been restored to the draft linearizations as the child category to parent, Bodily distress disorder. Additionally, ICD-10’s F48.0 Neurasthenia has been restored to the draft, under parent, Mental and behavioural disorders.

Update at May 9, 2014: Three uniquely coded severity specifiers (Mild, Moderate, Severe) have now been added back as child categories to Bodily distress disorder but Somatization disorder remains as a uniquely coded child category to BDD.

In the ICD-11 Beta, it had previously been proposed that seven ICD-10 Somatoform disorders categories (F45.0 – F45.9) plus F48.0 Neurasthenia would be replaced by this single new disorder construct, Bodily distress disorder (BDD) [2].

But how these two (now apparently proposed to be restored) ICD-10 legacy categories, Somatization disorder and Neurasthenia, are currently envisaged to function within a new disorder framework to replace the Somatoform disorders categories remains unclarified.

Update at May 15, 2014: Somatization disorder, listed as a uniquely coded child category under parent, Bodily distress disorder, has been removed from the Beta draft Linearizations since publishing the update on May 9. Instead, the ICD-10 legacy terms, somatoform disorders and Somatization disorder are both now listed under Synonyms to Bodily distress disorder and also listed as Index Terms. The three severity specifiers for BDD, (Mild, Moderate, Severe) remain.

Neurasthenia, listed as a child category under parent, Mental and behavioural disorders, has now been removed from the Linearizations and is not listed in the PDF for the print version of the Alphabetical Index.

11. Without full disorder descriptions, criteria, inclusions, exclusions, differential diagnoses etc. or field test protocol, there is insufficient information in the public version of the Beta draft to determine the characteristics and criteria for whatever construct is being progressed to field tests; or to determine whether the initial field testing protocol represents the construct favoured by the Revision Steering Group (RSG); or to determine whether the two advisory groups and the RSG have reached consensus over the revision of the Somatoform disorders categories.

12. ICD-11 Beta is a work in progress, updated daily, and not finalized. Proposals for new categories are subject to ongoing revision and refinement, to field test evaluation, may not survive field testing, and are not approved by ICD Revision or WHO.

+++
References for 12 Point Skinny on ICD-11:

1. Joint letter signed by Annette Brooke MP, Chair, All Party Parliamentary Group on M.E., Countess of Mar, Chair, House of Lords-led group Forward ME, Dr Charles Shepherd, Medical Adviser of the ME Association, Sonya Chawdhury, Chief Executive, Action for M.E.
http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/get-informed/who-icd-11-letter-17-3-14-sc.pdf

2. Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. http://www.ncbi.nlm.nih.gov/pubmed/23244611 [Full text behind paywall]

3. Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS: Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Fam Pract Feb 2013 [Epub ahead of print July 2012]. http://www.ncbi.nlm.nih.gov/pubmed/22843638. Full free text: http://fampra.oxfordjournals.org/content/30/1/76.long

4. Graphic comparing Fink et al’s BDS criteria with DSM-5’s SSD

5. ICD-11 Beta drafting platform public version: Bodily distress disorder: http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f767044268

Caveats: The ICD-11 Beta drafting platform is not a static document: it is a work in progress, subject to daily edits and revisions, to field test evaluation and to approval by Topic Advisory Group Managing Editors, the ICD Revision Steering Group and WHO classification experts.

 

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