A round up of updates on ICD-11

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1. Next release of the ICD-11 MMS (the blue “Version for preparing implementation” platform)

It was anticipated that the ICD-11 Blue platform would continue to be updated annually to incorporate all the changes approved and implemented in the Orange Maintenance platform since the last update was released.

There has been no new release of the Blue platform since April 2019.

So, for example, the exclusions for 8E49 PVFS; BME; and CFS under 6C20 Bodily distress disorder which were approved and implemented in the Orange Maintenance platform in January, this year, don’t yet display under the exclusions list for 6C20 Bodily distress disorder in the Blue platform.

A couple of weeks ago, I contacted the WHO’s Dr John Grove to enquire when the next update of the Blue platform was anticipated to be published.

I also asked when the Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD-11 Mental, Behavioural and Neurodevelopmental Disorders is expected to be finalised and released.

Yesterday, I received a response from the WHO’s Dr Robert Jakob who advised that the 2020 release of the ICD-11 Blue platform will be posted in a few weeks.

 

2. Proposal for deprecation of the prefix “Benign” from “Benign myalgic encephalomyelitis”

In February, I submitted a new proposal for removal of the prefix “Benign” from “Benign myalgic encephalomyelitis” citing, inter alia, the precedent of the removal of the “Benign” prefix for the final update of ICD-10 (Version: 2019).

My proposal and rationale can be read here in PDF format.

There remain hundreds of proposals waiting to be reviewed in the ICD-11 Proposal Mechanism and my proposal has not yet been processed. I am hoping it will be reviewed and accepted in time for inclusion in the ICD-11 MMS 2020 release.

 

3. Finalisation and publication of the CDDG

The Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD-11 Mental, Behavioural and Neurodevelopmental Disorders has been developed by the WHO Department of Mental Health and Substance Abuse. It is the equivalent of the ICD-10 “Blue Book”.

The descriptive texts in Chapter 06: Mental, behavioural or neurodevelopmental disorders in the core version of ICD-11 are intended for use by coders and clerical workers as a basis for statistical reporting.

The CDDG provides expanded clinical descriptions, essential (required) features, boundaries with other disorders and normality, differential diagnoses, additional features, culture-related features and codes for all mental and behavioural disorders commonly encountered in clinical psychiatry and is intended for use by mental health professionals and for general clinical, educational and service use.

The draft texts for the CDDG have not been accessible to public stakeholders for review and comment, though clinicians have been able to register to review the draft and provide feedback throughout its development via the Global Clinical Practice Network platform.

Last year, the WHO stated that the CDDG would be published “as soon as possible” after the May 2019 adoption of ICD-11 at the 72nd World Health Assembly.

I was advised, yesterday, by Dr Jakob, that the CDDG is still being amended based on feedback from the field and that the mental health team hasn’t provided a clear deadline [for its finalisation and release].

 

4. Publication of the ICD-11 PHC

There is no indication when the WHO expects to finalise and release the ICD-11 PHC — a clinical guideline written in simpler language to assist non-mental health specialists, especially primary care practitioners and non medically trained health workers and also intended for use in low resource settings and low- to middle-income countries, with the diagnosis and management of common mental disorders.

The ICD-11 PHC is proposed to comprise 27 mental disorders and contains no general medical diseases. Like the ICD-10 PHC (1996), this revised diagnostic and management guideline will not be mandatory for use by member states.

For the mandatory core ICD-11 classification, the WHO has gone forward with Bodily distress disorder (BDD), which is conceptually similar to DSM-5’s Somatic symptom disorder (SSD).

But for the ICD-11 PHC, a disorder category called “Bodily Stress Syndrome (BSS)” that has been adapted from the Fink et al (2010) Bodily distress syndrome (BDS) is proposed to be included to replace ICD-10 PHC’s F45 Unexplained somatic complaints and F48 Neurasthenia categories.

See Comparison of SSD, BDD, BDS, BSS in classification systems, July 2018.

Under exclusions and differential diagnoses for BSS, certain psychiatric and general medical diagnoses have to be excluded but CFS, ME; IBS; and FM appear not to be specified as exclusions.

See this post Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders for more information on the ICD-11 PHC and this slide presentation: MUS becomes Bodily Stress Syndrome in the ICD-11 for primary care, Marianne Rosendal.

The ICD-11 PHC has not been developed on a publicly accessible platform and the draft texts for the 27 mental disorders proposed to be included are not available for public stakeholder review and comment.

The proposed “Bodily Stress Syndrome (BSS)” category, its proposed text and proposed criteria need stakeholder scrutiny.

If ICD-11 PHC goes forward with its proposed BSS category, there will be all these diagnostic constructs and criteria sets in play:

Somatic symptom disorder (DSM-5; under BDD Synonyms list in the core ICD-11)
Bodily distress disorder (core ICD-11; SNOMED CT)
Bodily Stress Syndrome (ICD-11 PHC guideline for 27 mental disorders)
Bodily distress syndrome (Fink et al 2010, operationalized in Denmark and beyond)

plus the existing ICD-10 and SNOMED CT Somatoform disorders categories and their equivalents in ICPC-2.

 

5. A revised version of my report “Update on classification and coding of PVFS, ME and CFS for ICD-11” (v4 August 2020) is available to download

The PDF can be downloaded here.

Thumbnail pages 1 and 4:

 

6. The ICD-11 codes are now frozen

On February 10, 2020, the WHO stated on the Proposals platform: “The ICD-11 codes are now frozen. Proposed changes to the classification that would result in a code change are not permitted.”

Changes that would not disrupt the structure of the code hierarchies, for example, additions to the Index, addition or deletion of Synonym terms or Exclusion terms, edits to category Description texts or correction of typos are permissible.

But proposals for major changes such as relocating an existing Concept Title to a different chapter (which would necessitate a code change) or moving a term under a different “primary parent” code within its current chapter could not be considered.

For further information on ICD-11 update schedules and what classes of changes are permitted see:

ICD-11 Reference Guide sections 3.8.1 to 2.8.7: 3.8 Annex: ICD-11 Updating and Maintenance

Update on NHS Digital’s request for addition of SEID to SNOMED CT terminology system

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Update on NHS Digital’s request for addition of Systemic exertion intolerance disease (SEID) to SNOMED CT terminology system

In February 2015, a panel convened by the Institute of Medicine (IOM), now the National Academy of Medicine (NAM), published a report on ME, CFS called “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.”[1]

The panel undertook an evidence review and formulated recommendations which had included proposals for new diagnostic criteria and the suggestion of the name “Systemic exertion intolerance disease (SEID)”, as part of a number of recommendations put forward for review and consideration by the Report’s sponsor agencies.

Five years on:

  • The CDC has not adopted the term “Systemic exertion intolerance disease (SEID)”. In preference, the CDC uses “ME/CFS” on its website clinical information pages and for its Continuing Medical Education (CME) activities.
  • The NCHS-CDC have not added the SEID term to ICD-10-CM, an adaptation of the WHO’s ICD-10, that is mandatory in the US for assigning diagnostic codes for medical billing and reimbursement.
  • The SEID term has not been added to the final update of the WHO’s international edition of ICD-10 (Version: 2019).
  • The SEID term has not been added to the SNOMED CT US Edition by its managers, the National Library of Medicine (NML), either as a new Concept code, or as a Synonym or Child term.
  • The IOM panel’s Report formed part of the literature review for the revision of the ICD-10 G93.3 legacy categories. The WHO and the ICD-11 CSAC and MSAC committees have not included the SEID term in ICD-11.
  • The IOM panel’s suggested case definition has not been subject to field testing by, or on behalf of the CDC. Several studies published since the Report’s release concluded that the proposed SEID case definition lacks reliability and specificity; discussed the unintended consequences of not specifying exclusionary illnesses; and noted the lack of acceptability to patients of the proposed case definition and proposed SEID nomenclature.

A couple of minutes on Google demonstrates that some websites providing clinical information to physicians, healthcare professionals and patients are referring to “Systemic exertion intolerance disease” as though the term had been tested, evaluated and adopted by US federal agencies — when this is not the case.

In the March 2020 issue of the ME Global Chronicle, I reported on a request submitted by NHS Digital in November 2019 for addition of the “Systemic exertion intolerance disease (SEID)” term to the SNOMED CT terminology system.

SNOMED CT is used in over 30 countries and is the recommended terminology system in the UK, US, Canada, New Zealand and Australia [2].

For NHS England, SNOMED CT UK Edition is the mandatory terminology system across all primary and secondary healthcare settings. The system is used by clinicians in electronic medical records (EMRs), at the point of care, to record findings, symptoms, diagnoses, interventions, procedures etc.

The UK Edition of SNOMED CT terminology system is managed by NHS Digital [3].

Authorized users can register to submit requests for changes or additions to the terminology system via an NHS Digital submission portal. Requests that meet criteria for potential addition to the SNOMED CT International Edition are referred on for consideration by SNOMED International’s terminology specialists.

Submission #30104 (November 30, 2019) requested addition of the term “Systemic exertion  intolerance disease” as a Synonym under the existing SNOMED CT Concept: 52702003 Chronic fatigue syndrome [4].

The request appeared to originate from within the NHS (or other authorized SNOMED CT user) as no other class of stakeholder is referenced as the original requester.

The rationale text in support of request #30104 can be read on the NHS Digital Request Submission Portal, here: http://bit.ly/39Pz4vy

After drawing attention to this request on Twitter, I was contacted in March by a senior member of SNOMED International’s team.

I was advised that request #30104 had been submitted for consideration for addition to the SNOMED CT International Edition; that the request had already been processed and pending any further changes, would be implemented in the International Edition’s July release.

(Note: If the term “Systemic exertion intolerance disease (SEID)” was approved for addition to the July 2020 International Edition, the term would then be absorbed into the various national editions when they released their next updates.)

As the IOM panel’s proposed case definition and suggested term have not undergone field testing and evaluation; as the SEID term has not been adopted by US federal agencies; and as NCHS-CDC has made no decision to assign a code for SEID in the US ICD-10-CM for medical billing and reimbursement, it would be premature to approve a request for addition to the SNOMED CT International Edition.

These concerns for the potential addition of an untested, unadopted term to the SNOMED CT system were passed back to SNOMED International’s terminology specialists for their consideration.

In early June, I was informed that the terminology team had reviewed the information provided and concluded that adding “Systemic exertion intolerance disease” as a synonym is premature; that approval of this request had been retracted and SEID would not be included in the July release.

This was further confirmed on a SNOMED CT internal production page (see last entry under heading: “Concepts to be removed completely from the Alpha release content”): https://bit.ly/2Xed60V

The July 2020 release of the International Edition was published on July 31: https://bit.ly/39HA1a2

I can confirm that the two Synonyms terms that had been added under 52702003 Chronic fatigue syndrome for the Alpha production release:

● 3902795018 – SEID – systemic exertion intolerance disease
● 3902796017 – Systemic exertion intolerance disease

have been removed for the finalised July 2020 release*.

*In the event of a request for a change or addition to SNOMED CT not being accepted there is a formal appeals process and the submitter may request a further review of the decision. SNOMED International has confirmed that NHS Digital has not appealed against the decision not to add SEID to the finalised July 2020 release.

An abridged version of this post can be downloaded in PDF format here: https://bit.ly/2XeeS2e

References:

1 Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington (DC): National Academies Press (US); Feb 2015. https://www.ncbi.nlm.nih.gov/pubmed/25695122

2 SNOMED CT International Edition browser and browsers for 14 national editions: https://browser.ihtsdotools.org/

3 NHS Digital SNOMED CT browser: http://bit.ly/38OqL1R

4 NHS Digital SNOMED CT Submission Portal: Request 30104:
https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=30104

About SNOMED CT:

Clinical classifications like ICD-10 and the SNOMED CT terminology system are complementary and serve different purposes. ICD-10 is used after the event by clinicians and coders and focuses on diagnostic coding and data recording for statistical and epidemiological analysis, reimbursement and  resource allocation.

SNOMED CT is used by clinicians in electronic medical records (EMRs), at the point of care, to record findings, symptoms, diagnoses, interventions, procedures etc.

Each clinical concept or phrase is assigned a unique SCTID code to provide a standardised, machine readable terminology for recording and sharing clinical information across multiple health care settings. SCTID codes are mapped to ICD-10 and to ICPC-2e codes for interoperability.

SNOMED CT is considered to be the most comprehensive, multilingual healthcare terminology in the world. It is used in over 30 countries and is the recommended terminology system in the UK, US, Canada, New Zealand and Australia.

SNOMED CT International Edition releases two updates a year. A number of countries maintain national editions which automatically incorporate the updated content from the core SNOMED CT International releases but may also include country specific terminology. The national editions release twice yearly updates on a staggered schedule and their current content may not reflect the changes and additions to the most recent release of the International Edition.

SNOMED CT does not regulate which concepts should or should not be used in clinical records, but makes concepts available in response to requests from stakeholders and in accordance with its editorial and content development principles [1].

Since April 2018, SNOMED CT UK Edition [2] has been the mandatory terminology system for use in NHS primary care, replacing the Read Code (CTV3) terminology system which is now retired. SNOMED CT UK Edition was scheduled for adoption across all clinical, secondary care and mental health settings from April 2020.

Browsers for the SNOMED CT International Edition and the national editions for Australia, Belgium, Canada, Denmark, Netherlands, Sweden, US and a number of other countries can be accessed here:

SNOMED International SNOMED CT Browser: http://browser.ihtsdotools.org/

1 SNOMED CT International Release Content Development:
https://confluence.ihtsdotools.org/display/DOCSTART/9.+Content+Development

2 The SNOMED CT UK Edition is managed by NHS Digital, as the designated UK National Release Centre. A public browser can be accessed here: https://termbrowser.nhs.uk/

Australian Institute of Health and Welfare (AIHA) releases ICD-11 Review Stakeholder consultation report 2019

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In May 2019, the World Health Assembly (WHO) adopted ICD-11 for implementation by member states from January 01, 2022.

In early 2019, the Australian Institute of Health and Welfare (AIHA) undertook a national consultation regarding ICD-11 to inform decisions on whether, when and how to implement ICD-11 in Australia.

The report of the AIHA was released on March 12, 2020:

Australian Institute of Health and Welfare (AIHA) ICD-11 Review Stakeholder consultation report 2019

  • ISBN: 978-1-76054-671-7
  • Cat. no: HWI 31
  • Pages: 34

Release Date: 12 Mar 2020

Table of Contents

Summary

A PDF of the Report can be downloaded from the Formats page

WHO retires “Benign” from “Benign myalgic encephalomyelitis” for final ICD-10 release

Post #357 Shortlink: https://wp.me/pKrrB-56g

In my report for the December edition of the ME Global Chronicle, I set out how the G93.3 terms:

Postviral fatigue syndrome

Benign myalgic encephalomyelitis

Chronic fatigue syndrome

are classified in the World Health Organization’s international version of ICD-10 and how these terms have been classified for ICD-11.

I have an update on ICD-10 and it’s good news!

In January, the WHO released ICD-10 Version: 2019. With ICD-11 on the horizon, this release will be the final update for the WHO’s international version of ICD-10, apart from corrections and exceptional additions.

In March 2016, a representative from the Canadian Institute for Health Information submitted a request and supporting rationale to the ICD-10 Update and Revision Committee (URC) for removal of the prefix “Benign” from “Benign myalgic encephalomyelitis”.

This request for a change was approved by the URC in September 2016 for implementation in the next release. 

For ICD-10 Version: 2019, the G93.3 Tabular List inclusion term is now Myalgic encephalomyelitis.

(The term, “Benign myalgic encephalomyelitis” has been retained as an Index term.)

 

View the revised listing for the G93.3 codes on the ICD-10 Browser, here: https://icd.who.int/browse10/2019/en#/G93.3 or in the screenshot, below.

Note that for ICD-10, Chronic fatigue syndrome is not included in the Tabular List but is included in Volume 3: Index, where it is coded to the G93.3 Postviral fatigue syndrome concept title term.

For ICD-11, the WHO has retained Postviral fatigue syndrome as the concept title term in Chapter 08: Diseases of the nervous system under parent: Other disorders of the nervous system. The new code for ICD-11 is: 8E49.

Benign myalgic encephalomyelitis and Chronic fatigue syndrome are both specified as inclusion terms under Postviral fatigue syndrome in ICD-11’s equivalent to the Tabular List and take the 8E49 code. A number of historical and alternative terms are retained as index terms and all 14 index terms are coded to 8E49.

 

This is how the G93.3 terms are classified for ICD-10 Version: 2019:

Image 1: ICD-10 Browser Version: 2019, Accessed February 20, 2020: https://icd.who.int/browse10/2019/en#/G93.3

Image location: https://dxrevisionwatch.files.wordpress.com/2020/02/meicd1019.png

 

The WHO expects Member States to be using the most recent release of ICD-10. But countries will implement the ICD-10 Version: 2019 release according to their own schedules. 

NHS England and ICD-10:

NHS England currently uses ICD-10 Version: 2016. I have contacted NHS Digital’s classifications lead to establish whether NHS Digital intends to implement Version: 2019 or may be considering skipping the new release in preference to implementing ICD-11, at some point in the future.

If there is no mechanism for incorporating selected changes in a new release into earlier versions, NHS England might not be able to absorb this change into the version it is using.

 

Will this change be absorbed automatically for ICD-11?

This revision for the final release of ICD-10 sets a precedent for the national modifications of ICD-10, for example, the U.S. ICD-10-CM and Canadian ICD-10-CA, but also for ICD-11. 

Proposals submitted in March 2017 by Chapman & Dimmock, and by the IACFS/ME for removing “Benign” from “Benign myalgic encephalomyelitis” were rejected by the WHO in early 2019.

In February, I submitted a new proposal for removal of the “Benign” prefix for ICD-11 citing the URC’s 2016 decision and the implementation of that decision for the final release of ICD-10.

You can read a copy of my new proposal and rationale here: http://bit.ly/BenignICD11

I have updated the PDF included in my report in the December edition of the ME Global Chronicle to reflect this change:

Download the PDF of my updated report here:

Update on the classification of PVFS, ME and CFS for ICD-11 Report One | November 2019 | v3 18/02/20

 

An edited version of this report is scheduled for publication in the March edition of the ME Global Chronicle.

WHO approves exclusions for PVFS, ME and CFS under ICD-11’s Bodily distress disorder

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An edited version of this report is scheduled for publication in the March edition of the ME Global Chronicle.

For ICD-11, most of the ICD-10 F45 Somatoform disorders categories and F48.0 Neurasthenia have been replaced by a single new category called “Bodily distress disorder” (BDD). 

Although this sounds like it might be very similar to Per Fink’s Bodily distress syndrome (BDS), ICD-11’s BDD is conceptually closely aligned with the DSM-5’s Somatic symptom disorder (SSD).

For ICD-11, Somatic symptom disorder is listed under Synonyms under BDD but is not coded as an inclusion term.

Both the WHO and Prof Fink have clarified that as defined for ICD-11, BDD is a conceptually different disorder construct — ICD-11’s BDD and Fink’s BDS are differently defined and characterised, have very different criteria and are inclusive of different patient sets.

For ICD-11, the BDD diagnosis requires both the presence of one or more chronic, distressing bodily symptoms (which can be “medically unexplained” or caused or exacerbated by a general medical condition) and “excessive attention” or “disproportionate or maladaptive” thoughts, feelings or behavioural responses to these symptoms. BDD can capture a percentage of patients with ME, CFS or other general medical diseases or conditions — if the clinician considers the patient also meets the disorder description for application of an additional mental disorder diagnosis of BDD. 

In contrast, Fink’s BDS disorder construct requires physical “symptom patterns” or “clusters” from one or more body systems; the symptoms must be “medically unexplained” and there is no requirement for emotional or behavioural responses to meet the criteria. If the symptoms can be better explained by a general medical disease, they cannot be labelled “BDS”. But crucially, Fink’s BDS is inclusive of ME, CFS, IBS and FM and subsumes these under a single, unifying diagnosis.

The terms “bodily distress disorder” and “bodily distress syndrome” have been used synonymously since 2007. Not surprisingly, researchers, academics and practitioners are already confusing and conflating ICD-11’s new “Bodily distress disorder” with Fink’s “Bodily distress syndrome”.

Although BDD can potentially be applied to patients with chronic, distressing symptoms associated with any general medical disease or condition, patients with a diagnosis of ME or CFS (or who are waiting for a diagnosis) may be particularly vulnerable to misdiagnosis with BDD or misapplication of an additional BDD mental disorder diagnosis, as a “bolt-on” to their existing diagnosis. 

Exclusions for the 8E49 terms under MG22 Fatigue and a reciprocal exclusion for MG22 Fatigue under 8E49 Postviral fatigue syndrome were secured by April 2019.

However, the need for adding exclusions for PVFS, ME and CFS under ICD-11’s BDD to mitigate the risk of misdiagnosis or misapplication had not been acknowledged or accepted by the WHO.

In my report in the December edition of the ME Global Chronicle, I mentioned that the proposals submitted by Chapman & Dimmock (March 2017) and by Lily Chu MD on behalf of IACFS/ME (March 2017) for exclusions for the three 8E49 terms under 6C20 Bodily distress disorder and for exclusion of 6C20 Bodily distress disorder under the 8E49 Postviral fatigue syndrome concept title had been rejected. 

In December 2019, I submitted a new proposal for exclusions for the three 8E49 terms under 6C20 Bodily distress disorder, supported by a new rationale text. 

I am very pleased to inform you that in January the WHO approved and implemented my proposal.

You can view the addition of the three exclusions under ICD-11’s Bodily distress disorder here: https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/767044268

Image 1: ICD-11 for Mortality and Morbidity Statistics (Maintenance Platform), Accessed February 18, 2019:

 

I have updated the PDF of my report in the December edition to reflect the addition of exclusions.

Download my updated report here: http://bit.ly/ICD11Update 

 

The WHO Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders:

For ICD-11, the WHO Department of Mental Health and Substance Abuse has developed the “Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders” (an equivalent publication to ICD-10’s “Blue Book”).

The CDDG provides expanded clinical descriptions, essential (required) features, boundaries with other disorders and normality, differential diagnoses, additional features, culture-related features and codes for all mental and behavioural disorders commonly encountered in clinical psychiatry. This companion publication is intended for mental health professionals and for general clinical, educational and service use.

The WHO has said it planned to release the CDDG “as soon as possible” after WHA’s adoption of ICD-11. But it remains unclear whether the CDDG has been finalised or if it will be released later this year or next year.

See this post Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders for more information.

Whilst clinicians have been able to register to review and provide feedback on the drafts, no draft texts for the CDDG have been made available for public stakeholder scrutiny and comment and I have not had access, for example, to the most recent draft for the full clinical descriptions and diagnostic guidelines for ICD-11’s Bodily distress disorder.

 

Additional resources:

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

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

Post: World Health Assembly adopts ICD-11: When will member states start using the new edition? June 17, 2019

Post: Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders, June 28, 2019

PVFS, ME and CFS in classification and terminology systems: notes for the future

Post #355 Shortlink: https://wp.me/pKrrB-4Yv

In 2002, I set up FreeMEuk — a Yahoo Group support and information exchange for patients with ME, CFS, and for carers, like myself. In 2007, I launched ME agenda to provide patients, carers and advocates with information, resources and commentary on the political issues affecting the lives of myalgic encephalomyelitis (ME) patients in the UK.

In January 2010, I created this site specifically to monitor and report on the development of the American Psychiatric Association’s DSM-5, the development of the World Health Organization’s ICD-11 and on other classification and terminology systems. Where appropriate, I have galvanized stakeholders to participate in review and comment exercises or co-ordinated other forms of response.

Down the years, I’ve undertaken numerous short and long-term ad hoc projects, advised others on technical matters relating to classification and terminology systems, submitted and collaborated in the submission of proposals, briefed politicians and patient organizations and kept patient forums up to date with key developments.

Today I am retiring after 17 years of advocacy work.

My sites will remain online for the foreseeable future. Over the coming months I shall be carrying out some housekeeping on this site to remove or archive older, less relevant content.

Classification and terminology systems are going to need continued monitoring; where required, input from stakeholder groups — clinicians, researchers, health practitioners and professional body allies, social workers, disability lawyers and advocacy organizations will need to be co-ordinated.

Where no process for public stakeholder input currently exists, channels of direct communication will need to be opened with the agencies responsible for the development and management of these systems and collaborative dialogues established.

WHO, for example, ostensibly gives more consideration to evidence based submissions supported by rationales, international consensus and input from clinical and professional bodies — has scant regard for patient opinion and none whatsoever for petitions or mass mailings — the latter and similar types of “action” will only undermine the careful work and discourse that I and others have fostered.

All these systems will require regular monitoring:

DSM-5:

DSM-5 published in May 2013; it has an update process which reviews formal submissions for changes to criteria, related texts, assessment measures or corrections. DSM-5 also absorbs relevant coding changes in the annual FY releases of the U.S. specific ICD-10-CM. Approved proposals are posted for a 45 day stakeholder comment period. For example, in 2015, an edit in the text for Somatic symptom disorder¹ was approved for implementation and the revised text published in the DSM-5 Update Supplement.

1 DSM-5 Update: Supplement to DIAGNOSTC AND STATISTICAL MANUAL OF MENTAL DISORDERS, FIFTH EDITION October 2018

ICD-10:

Member states using the WHO’s ICD-10 don’t all use the same version (or the most recent version), for example, NHS England currently mandates the use of ICD-10 Version: 2015, not Version: 2016. WHO has said that the final update to ICD-10 will be Version: 2019. This final release is understood to have been prepared but is not currently available on the ICD-10 Browser platform.

ICD-10-CM:

The U.S. uses ICD-10 for reporting mortality and developed a “clinical modification” of ICD-10 (called ICD-10-CM) for morbidity. A new release of ICD-10-CM is posted on the CDC website annually, in June.

There are two public NCHS/CDC Coordination and Maintenance Committee meetings a year through which proposals for changes to the ICD-10-CM can be submitted for discussion (in March and September) followed by a stakeholder comment period.

At the September 12, 2018 C & M Committee meeting, proposals for changes to the existing coding of R53.82 Chronic fatigue syndrome NOS; G93.3 Postviral fatigue syndrome, Benign myalgic encephalomyelitis; and a second option for addition of the SEID term were presented for consideration and public comment¹. Whilst no changes for these codes were approved for implementation in the FY 2020 ICD-10-CM release, this topic will need continued monitoring as it may be revisited at a future C & M Committee meeting for presentation of revised proposals.

1 ICD-10-CM Coordination and Maintenance Committee Meeting, September 11-12, 2018, Diagnosis Agenda Part 2

Other country specific clinical modifications of ICD-10:

Around 25 member states are also using a modification of the WHO’s ICD-10. For example: Canada (ICD-10-CA); Germany (ICD-10-GM); Australia (ICD-10-AM). Belgium, Luxembourg and Spain use ICD-10-CM; Ireland and Slovenia use ICD-10-AM.

Countries using modifications of ICD-10 have individual update cycles and varying policies around public stakeholder input and review. Some countries post their Tabular List and Index modifications in the public domain; others are available only under licence, for example, Australia’s ICD-10-AM isn’t publicly available. The coding, hierarchy and chapter location of the PVFS, BME and CFS terms differs between some of the clinical modifications, while others remain consistent with the structure of the WHO’s ICD-10.

This table from the eHealth DSI Semantic Knowledge Base project compiles information provided from a number of member states on their use of ICD (or a modification of ICD) and their plans regarding potential future implementation of ICD-11. Information has been provided by: Austria, Belgium, Croatia, Cyprus, Czech Republic, Estonia, France, Germany, Greece, Hungary, Ireland, Italy, Luxenbourg, Malta, Netherlands, Portugal, Slovenia and Spain: Current status of the use of ICD by eHDSI deploying countries (2018)

SNOMED CT:

SNOMED CT is a comprehensive clinical terminology system used in electronic patient health records. SNOMED CT maps to ICD-10 and there is a SNOMED CT to ICD-11 Mapping Project in progress.

SNOMED International has thirty-nine member countries. There is a SNOMED CT International Edition, for which two releases are issued per year (in January and July). There are a number of country specific national editions which release twice yearly updates on a staggered schedule. 12 of these national editions can be viewed on the SNOMED CT Browser platform.

SNOMED CT national editions absorb the changes in the most recent release of the International Edition but they can also include additional country specific terms. For example, the UK Edition has a unique Concept term: Medically unexplained symptoms (SCTID: 887761000000101). Prior to March 2019, the SNOMED CT Netherlands Edition had retained the term “neurasthenie” under Synonyms to Chronic fatigue syndrome, although the Concept term: Neurasthenia (SCTID: 268631001) and some associated codes had been retired from the International Edition and from all other national editions, some years ago. Following a request supported by a rationale, the term “neurasthenie” has now been removed from the Netherlands 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 as Synonym terms.

Following a successful submission in February 2018 for the addition of a new parent, SCTID: 52702003 Chronic fatigue syndrome (disorder) has been assigned under parent: SCTID: 118940003 Disorder of nervous system (disorder) since the July 2018 release of the SNOMED CT International Edition. This change of parent has been incorporated into the national editions.

The International Edition and the national editions of SNOMED CT will need monitoring twice yearly for changes and additions to their content.

ICD-11:

On May 25, 2019, the 72nd World Health Assembly voted unanimously to adopt the ICD-11. The earliest date from which member states can start using the ICD-11 code sets for reporting data is January 1, 2022. Countries are beginning to evaluate the new edition and develop road maps but even early implementers are anticipated to take several years to prepare their health systems for migration. There is no mandatory implementation date and countries will transition to ICD-11 at their own pace and according to their resources and requirements. For some years to come, WHO will be accepting data reported using both ICD-10 and ICD-11 code sets.

ICD-11 update and maintenance: The current release of ICD-11 (Version 04/2019) on the Blue ICD-11 MMS platform is a stable release but an update and maintenance cycle is already in place.

The various ICD-11 Topic Advisory Groups and sub working groups, the Revision Steering Group and the Joint Task Force have all been sunsetted. WHO is now advised on how to process proposals for changes to ICD-11 by the Family of International Classifications Network (WHO-FIC); the Classifications and Statistics Advisory Committee (CSAC); the Medical and Scientific Advisory Committee (MSAC); the Mortality and Morbidity Reference Groups; and the Functioning and Disability Reference Group.

Updates that impact on international reporting (the 4 and 5-digit structure of the stem codes) will be published every five years. Updates at a more detailed level can be published at annual rates. Additions to the ICD-11 index can be done on an ongoing basis. (There are currently in the region of 1200 unprocessed proposals waiting to be processed, with new proposals being submitted daily by WHO, professional bodies and other stakeholders.)

PVFS, BME, CFS: In a decision supported by the MSAC and CSAC committees, WHO rightly rejected the proposal of Dr Tarun Dua/Topic Advisory Group Neurology to delete the G93.3 legacy terms from the Diseases of the nervous system chapter and reclassify these terms in the Symptoms, signs chapter, under Symptoms, signs or clinical findings of the musculoskeletal system.

All three terms have been retained under their legacy chapter, under parent class: Other disorders of the nervous system, with 8E49 Postviral fatigue syndrome retained as the Concept Title. Benign myalgic encephalomyelitis; and chronic fatigue syndrome are both specified as Inclusion terms. Reciprocal exclusions for MG22 Fatigue were submitted for and approved.

The Proposal Mechanism platform for ICD-11 will need constant surveillance: there are currently no unprocessed proposals pending review for PVFS, BME and CFS. To date, WHO has rejected proposals for deprecation of the word “Benign” from Benign myalgic encephalomyelitis. This will need pursuing.

BDD: A proposal submitted by a third party in April 2017 for Deletion of 6C20 Bodily distress disorder has remained under review with the CSAC committee. According to WHO admins, in June 2019: “This proposal is being sent to MSAC to ensure the precedent decision on this issue still stands. Team3 WHO 2019-Jun-12 – 16:40 UTC”

(In February 2019, my own recommendations for 6C20 Bodily distress disorder had been marked as rejected by a different WHO admin team, with the comment: “This proposal has been extensively discussed by WHO and its advisory committees. There is no new scientific evidence to support this proposal and it will not be further processed. Team 2 WHO 2019-Feb-26 – 23:04 UTC)

On December 02, 2019 I submitted a new proposal and rational for adding exclusions for PVFS; BME; and CFS under 6C20 Bodily distress disorder. The WHO approved and implemented my proposal on January 17, 2020.

For copy of my rationale in support of this new proposal see: http://bit.ly/2NL0lX5

For more information on approved and rejected proposals see: Status of ICD-11 processed proposals v5 (updated to reflect implementation of exclusions under BDD).

Clinical modifications of ICD-11:

It is understood that the WHO would prefer to limit the development of national modifications and that policies around the licensing of ICD-11 are still being formulated. Countries developing modifications of ICD-11 will need surveillance.

See post World Health Assembly adopts ICD-11: When will member states start using the new edition? for more information on country plans.

See Presentation slides #36-38 for more information on licensing and the development of country modifications: Insights into the Next Revision: Like Texas, Everything is Bigger in ICD-11, Kathy Giannangelo, RHIA, CCS, CPHIMS, FHIMA, Texas Health Information Management Association.

ICD-11 and the CDDG guideline for mental disorders:

For ICD-11, the WHO Department of Mental Health and Substance Abuse has developed the “Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders” (an equivalent publication to ICD-10’s “Blue Book”).

The CDDG provides expanded clinical descriptions, essential (required) features, boundaries with other disorders and normality, differential diagnoses, additional features, culture-related features and codes for all mental and behavioural disorders commonly encountered in clinical psychiatry; it is intended for mental health professionals and for general clinical, educational and service use.

WHO has said it plans to release the CDDG “as soon as possible” after WHA’s adoption of ICD-11. But it remains unclear whether the CDDG has been finalized or if it will be released this month, later this year or next year. See this post Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders for more information.

Whilst clinicians have been able to register to review and provide feedback, no draft texts for the CDDG have been made available for public stakeholder scrutiny and comment and I have not had access, for example, to the most recent draft for the clinical descriptions and diagnostic guidelines for ICD-11’s Bodily distress disorder.

ICD-11 and the ICD-11 PHC:

Also under development is the WHO’s ICD-11 PHC — a clinical guideline written in simpler language to assist non-mental health specialists, especially primary care practitioners and non medically trained health workers, and also intended for use in low resource settings and low- to middle-income countries, with the diagnosis and management of common mental disorders. It comprises 27 mental disorders and contains no other disorders or diseases. Like the ICD-10 PHC (1996), this revised diagnostic and management guideline will not be a mandatory classification for member states.

For the mandatory core ICD-11 classification, WHO is going forward with the SSD-like Bodily distress disorder (BDD).

But the ICD-11 PHC is proposed to include a disorder category called “Bodily Stress Syndrome (BSS)” that has been adapted from the Fink et al (2010) Bodily distress syndrome (BDS). See Comparison of SSD, BDD, BDS, BSS in classification systems, July 2018.

Under exclusions and differential diagnoses for BSS, certain psychiatric and general medical diagnoses have to be excluded but CFS, ME; IBS; and FM appear not to be specified as exclusions. See this post Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders for more information.

It’s not known when this guideline is expected to be finalized and made available for download. The ICD-11 PHC has not been developed on a publicly accessible platform and draft texts are not available for public stakeholder review and comment. This non mandatory 27 mental disorder guideline needs close scrutiny.

ICPC-3:

The WONCA developed and WHO endorsed, International Classification of Primary Care (ICPC-2) is under revision for ICPC-3.

ICPC-2 is available in 34 countries; used in primary care in 27 countries and is mandatory in 6 EU countries, eg the Netherlands. The content of ICPC-3 will be linked to relevant classifications, such as ICD-10, ICD-11, ICF, ICHI, DSM-5, clinical terminologies such as SNOMED-CT, but also to previous versions of ICPC.

The draft content for ICPC-3 is not being developed on a publicly accessible platform and it’s unclear whether any form of stakeholder review will be undertaken or at what point.

Caveat: This ICPC-3 roadmap on an ICPC-3 Working Group platform may have been revised since it was posted: ICPC-3 Roadmap Milestones August 28, 2018.

Dr Marianne Rosendal (Aarhus University), who has published with Prof Per Fink, is the European representative on WONCA’s International Classification Committee and a member of the revision committee for ICPC-2, as is the U.S.’s, Dr Michael Klinkman. ICPC-2 meeting summary documents dating from 2010/2011 indicate that Dr Rosendal has discussed the potential for inclusion of a Bodily distress syndrome or similar disorder concept in the ICPC-3. Prof Per Fink is likely to be lobbying hard for its inclusion. The development of ICPC-3 will need very close monitoring.

Resources:

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

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

Post: ICD-11 implementation package, June 06, 2019

Post: World Health Assembly adopts ICD-11: When will member states start using the new edition? June 17, 2019

Post: Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders, June 28, 2019

Insights into the Next Revision: Like Texas, Everything is Bigger in ICD-11, Kathy Giannangelo, RHIA, CCS, CPHIMS, FHIMA, Texas Health Information Management Association

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