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

ICD-11 Proposal Mechanism and the "Proposal History" feature:

The "Proposal History" feature has recently been restored to the ICD-11 Proposal Mechanism platform. This feature was removed from the platform several years ago.

In order to view and interact with the Proposal Mechanism stakeholders are first required to register an account.
Register here: https://icd.who.int/dev11/Account/Register


In order to track the history of a proposal through the review process: log in and locate the proposal in the Proposal List using the Search function https://icd.who.int/dev11/proposals/f/en/ProposalList

You can search for proposals by searching for the submitter's username or by entering a disorder term, then clicking the "Filter" button.


Open the proposal whose history you wish to track and click on the orange "proposal history" button (located upper right of the screen):


proposalhistory4.png


A window will open displaying the proposer's name, the original submission date, the proposal's progress through the review system and its current status.

Some proposals will have been reviewed by one of the several Proposal Mechanism Admin Teams; some will be referred on to WHO classification experts for their consideration and/or to the ICD-11 Medical Scientific Advisory Committee (MSAC) or Classifications and Statistics Advisory Commitee (CSAC) committees for their consideration.


proposalhistory3.png





Following processing, some decisions to Approve and Implement or Reject a proposal are accompanied by a brief rationale. If a Rationale has been provided, these can be found on the proposal window under the heading "Comments on this proposal". (Rationales for decisions, where provided, are not included with the "Proposal History" details.)

In the example above, I have used the Proposal History for the WHO's Rejection on November 19, 2018 of the November 6, 2017 proposal submitted by Dr Tarun Dua to relocate the terms "Myalgic encephalitis/Chronic Fatigue Syndrome (ME/CFS)" [sic] to the Symptoms, signs chapter as a child under Symptoms, signs or clinical findings of the musculoskeletal system. This decision to reject the proposal submitted by Dr Dua was supported by the MSAC and CSAC committees:

Dr Tarun Dua proposal*:
https://icd.who.int/dev11/proposals...lGroupId=303c7493-554a-44c8-8e00-bd0c6c4cc6ef

*According to Dr Dua, this proposal had apparently been submitted on behalf of the external Topic Advisory Group (TAG) for Neurology which had ceased to operate beyond October 2016. Dr Dua had served as WHO Lead Secretariat and Managing Editor to TAG Neurology during its period of operation. The proposal, according to a clarification issued by Dr Dua, "represented the TAG's earlier conclusions." It remains unclear why the TAG had not presented this proposal during its period of operation.

Further reading:

Update on the classification of PVFS, ME and CFS for ICD-11 ICD-11 Report One | November 2019, prepared by Suzy Chapman, Dx Revision Watch for The ME Global Chronicle
https://dxrevisionwatch.files.wordp...n-classification-of-pvfs-me-cfs-for-icd11.pdf


ICD-11 Proposal Mechanism, status of processed proposals at 01.11.19 v4, prepared by Suzy Chapman, Dx Revision Watch
https://dxrevisionwatch.files.wordpress.com/2019/10/outcome-of-icd-11-processed-proposals-v4.pdf
 
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Presentation slides:

https://www.eapm.eu.com/wp-content/...der_Persistent_physical_symptoms_20190620.pdf

7th Annual EAPM Conference, Rotterdam, June 20, 2019

Persistent physical symptoms: Descriptive or etiologically-oriented classification? Implications for treatment

Andreas Schröder, MD, PhD Consultant, Clinical associate professor The Research Clinic for Functional Disorders and Psychosomatics Aarhus University Hospital, Denmark
 
When reading the book chapter below, please note the following:

1 ICD-11 was endorsed by the World Health Assembly in May 2019, with endorsement to come into effect on January 01, 2022.

2 The chapter below refers to ICD-11's myalgic enecephalitis [sic] and to benign myalgic encephalitis [sic].

Neither of these terms is listed in ICD-11 as a specified inclusion term under 8E49 Postviral fatigue syndrome nor is either of these terms listed in ICD-11 under Index terms to 8E49 Postviral fatigue syndrome. (The term myalgic encephalitis is listed in the SNOMED CT UK Edition, but not in the SNOMED CT International Edition.)

3 ICD-11 contains no Definition or Description texts for 8E49 Postviral fatigue syndrome or its specified inclusion terms, Benign myalgic encephalomyelitis; chronic fatigue syndrome. There are no criteria included in ICD-11 for any of the 8E49 terms.

The text below states: "If the fatigue is not associated with a virus it is recommended to consider coding it within disorders of bodily distress, which can present with a single symptom (e.g., fatigue) or multiple symptoms (e.g., fatigue, pain, aches)." and:

"Chronic Fatigue
"It is classified in ICD-11 under “disorders of bodily distress” or “post viral fatigue” if it develops following a viral infection."

Note that there is no guidance included in ICD-11 (or in ICD-10) for coders and clinicians regarding the application of the 8E49 code and the recommendations above are not included in ICD-11.

4 WHO/ICD Revision carried out no field testing on the validity, reliability, safety, prevalence, acceptability of the application of the ICD-11 Bodily distress disorder construct in children and young people.


[My highlighting]

https://iacapap.org/content/uploads/I.1-Somatic-synptom-disorders-2019.pdf


IACAPAP Textbook of Child and Adolescent Mental Health


SOMATIC SYMPTOM, BODILY DISTRESS AND RELATED DISORDERS IN CHILDREN AND ADOLESCENTS 2019 edition

Olivia Fiertag, Sharon Taylor, Amina Tareen & Elena Garralda S

Extracts from Chapter from:

Fiertag O, Taylor S, Tareen A, Garralda E. Somatic symptom, bodily distress and related disorders in children and adolescents. In Rey JM, Martin A (eds), IACAPAP e-Textbook of Child and Adolescent Mental Health. Geneva: International Association for Child and Adolescent Psychiatry and Allied Professions 2019.

(...)

ICD-11 categorizes somatizing under the heading of disorders of bodily distress or bodily experience. This is described as having bodily symptoms which the individual finds distressing and to which excessive attention is directed. Unlike DSM-5, ICD-11 disorders of bodily distress do not include conversion disorder, which is integrated within a separate category of dissociative neurological symptom disorders (in which there is a disruption of and/or discontinuity in the normal integration of consciousness, memory, identity, emotion, perception, body representation, motor control and behavior). The full ICD-11 is not yet available; however, we present the most recent information, provided in the December 2018 version.

In both, DSM-5 and ICD-11, the somatizing disorders most commonly seen in children and adolescents are:

• Somatic symptom disorder

• Disorder of bodily distress

• Dissociative disorders

• Conversion disorder and

• Chronic fatigue syndrome.

Conditions categorized in previous classifications as somatoform disorder or somatization disorder would now be included under the categories of disorders of bodily distress/somatic symptom disorder. Chronic fatigue syndrome shares key features with somatic symptom disorder but is not included in DSM-5 as a separate category.

It is classified in ICD-11 under “other disorders of the nervous system” as “post viral fatigue syndrome.” This category includes the illnesses termed benign myalgic enecephalitis [sic] and chronic fatigue syndrome. If the fatigue is not associated with a virus it is recommended to consider coding it within disorders of bodily distress, which can present with a single symptom (e.g., fatigue) or multiple symptoms (e.g., fatigue, pain, aches). A summary of the specific criteria for some of these disorders is outlined in Table I.2.2."


Chronic Fatigue Syndrome

This condition, earlier described as “neurasthenia” and “post viral fatigue” in ICD-10, was not included in DSM-IV nor DSM-5. It is classified in ICD-11 under “other disorders of the nervous system” as “post viral fatigue syndrome.” This category includes the illnesses termed “benign myalgic encephalitis” [sic] and “chronic fatigue syndrome.” If the fatigue is not associated with a virus, it is recommended to consider coding it within “disorders of bodily distress,” which can present with a single symptom (e.g., fatigue) or multiple symptoms (e.g., fatigue, pain, aches).

Criteria for diagnosis for post viral fatigue include:

• Presence of a viral infection pre-dating the illness onset

• Either persistent and distressing complaints of increased fatigue after mental effort, or persistent and distressing complaints of bodily weakness and exhaustion after minimal effort

• May have associated feelings of muscular aches/pains, dizziness, headaches, sleep disturbance, inability to relax, irritability, dyspepsia

• Autonomic or depressive symptoms present are not sufficiently persistent and severe to fulfil the criteria for any other disorder Patient groups with his condition often object to the psychological approach to its understanding and management (Cohen, 2015), as has been the case in the past for patients with somatoform disorders. In addition there are different views as to how it should be named. As for other disorders in this chapter, disease mechanisms are likely to be complex, with both biological (infectious, immunological, genetic) and psychosocial factors contributing to the development and maintenance of symptoms (Brurberg et al, 2014).

All of these conditions encompass:

• Repeated presentations of physical symptoms with

• Persistent requests for medical investigations despite negative findings and medical reassurance and

• The patient often resists attempts to discuss the possibility of a psychological causation.


(...)

Chronic Fatigue

It is classified in ICD-11 under “disorders of bodily distress” or “post viral fatigue” if it develops following a viral infection. This syndrome commonly starts with an acute flu-like illness or glandular fever. It can have an insidious onset and fluctuating course. Chronic fatigue is characterized by physical and mental fatigue and exhaustion after comparatively minor mental or physical effort. The fatigue is not relieved by rest and is associated with a decline in the ability to cope with, and withdrawal from daily activities. The child is likely to complain of headaches, sleeping problems, aches and pains, poor concentration, dizziness, physical weakness, moodiness and worry about decreasing physical and mental health. The fatigue is chronic and is not related to an ongoing medical illness. There is often comorbid psychopathology particularly anxiety and depression. The child’s family may have sought numerous medical opinions and the child may have received multiple diagnoses by the time of assessment. The functional impairment is often prolonged, with marked school absence and lengthy periods of bed rest (Garralda, 1996, Garralda & Chalder, 2005; Roma et al, 2019).

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

Full free text for this chapter

and in attachment
 

Attachments

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Dx Revision Watch said:
Presentation slides:

https://www.eapm.eu.com/wp-content/...der_Persistent_physical_symptoms_20190620.pdf

7th Annual EAPM Conference, Rotterdam, June 20, 2019

Persistent physical symptoms: Descriptive or etiologically-oriented classification? Implications for treatment

Andreas Schröder, MD, PhD Consultant, Clinical associate professor The Research Clinic for Functional Disorders and Psychosomatics Aarhus University Hospital, Denmark
Click to expand...
Yikes. The average high school science fair is more credible than this nonsense. So is the average self-help symposium. 4 whole randomized open label trials trials in 14 years and this is an actual boast. It's all feelings and speculation with some glowing testimonies of people who "liked" the experience, which apparently is how we measure things in medicine now. Well, in psychosomatics anyway.

It will be fascinating to study this in the future, with interesting comparisons to the people who continued to insist in stuff like humours and reacted with outrage at the notion that they should wash their dirty hands before shoving them in someone's exposed flesh. This lot is an anachronistic aberration, they believe medieval stuff despite having access to the best education, information and resources in the world.

I'd call that phenomenon high-on-your-own-farts syndrome.
 
rvallee said:
Yikes. The average high school science fair is more credible than this nonsense. So is the average self-help symposium...
Click to expand...

The Journal of Psychosomatic Research is the official organ of the European Association of Psychological Medicine (EAMP)

https://www.sciencedirect.com/journal/journal-of-psychosomatic-research

Editorial Board:

https://www.sciencedirect.com/journal/journal-of-psychosomatic-research/about/editorial-board



They award one of their cronies the annual Alison Creed Award (the late wife of Prof emeritus Francis Creed, a former editor).

In 2017, Fink was presented with this award. Sharpe has also received this award:

Syndromes of bodily distress or functional somatic syndromes – Where are we heading. Lecture on the occasion of receiving the Alison Creed award 2017, Fink, Per. Journal of Psychosomatic Research, Volume 97, 127 – 130
https://www.jpsychores.com/article/S0022-3999(17)30445-2/fulltext

Lecture slides: https://dxrevisionwatch.files.wordpress.com/2019/09/eaclpp_per-fink_somatoform-disorders-slides.pdf


Next year's conference:

https://www.eapm2020.com
 
Re Post #323 re Garralda et al recommending ICD-11's Bodily distress disorder be considered for children with chronic fatigue and chronic fatigue syndrome without a history of viral onset (free chapter: SOMATIC SYMPTOM, BODILY DISTRESS AND RELATED DISORDERS IN CHILDREN AND ADOLESCENTS):

The International Association for Child and Adolescent Psychiatry and Allied Professions (IACIPAP) is a non-governmental international association that advocates for the "promotion of the mental health and development of children and adolescents through policy, practice and research."

Website: https://iacapap.org
 
In both, DSM-5 and ICD-11, the somatizing disorders most commonly seen in children and adolescents are:
• Somatic symptom disorder
• Disorder of bodily distress
• Dissociative disorders
• Conversion disorder and
• Chronic fatigue syndrome.

It is helpful to have that stated so clearly.
 
It is often hard in clinical practice to make a distinction between what is a conscious manipulation in factitious disorder and what is a psychosomatic presentation, particularly in children.

The child psychiatrist clearly likes to simplify. If it isn't factitious it must be psychosomatic.
 
chrisb said:
In both, DSM-5 and ICD-11, the somatizing disorders most commonly seen in children and adolescents are:
• Somatic symptom disorder
• Disorder of bodily distress
• Dissociative disorders
• Conversion disorder and
• Chronic fatigue syndrome.

It is helpful to have that stated so clearly.
Click to expand...


ICD-11 isn't in use yet and WHO has carried out no field trials into the application of any of these terms in children. Neither did the DSM-5 Task Force undertake field trials for application of SSD in children.
 
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New Proposal submitted today via ICD-11 Proposal Mechanism (for which registration is required for access/interaction):

2019-Dec-01 - 14:56 #296I [Edited: 2019-Dec-02]

Originator: Suzy Chapman

Content Enhancement Proposal

Bodily distress disorder

https://icd.who.int/dev11/proposals...lGroupId=6fb30430-3ea5-45e0-aa6e-7e8599498b96

Add: Exclusions for:
  • Benign myalgic encephalomyelitis
  • Chronic fatigue syndrome
  • Postviral fatigue syndrome


Rationale and references:

The author has no affiliations or conflicts of interest to declare.

In ICD-10, there is an exclusion for G93.3 Postviral fatigue syndrome under F48.0 Neurasthenia and its inclusion, Fatigue syndrome [1]. Chronic fatigue syndrome is indexed in Volume 3: Alphabetical Index to the G93.3 code [2].

The NHS Digital publication: National Clinical Coding Standards ICD-10 5th Edition (2018) provides the following guidance (on page 84):

"Caution is required when 'fatigue syndrome' is used as a diagnosis within the medical record. The Alphabetical Index takes the coder to F48.0 Neurasthenia which includes fatigue syndrome. However many patients actually have chronic fatigue syndrome, which is an alternative name for the postviral fatigue syndrome or myalgic encephalomyelitis (ME). Chronic fatigue syndrome is coded to G93.3 Postviral fatigue syndrome. Coders should therefore clarify the nature of the fatigue with the responsible consultant before assigning a code." [3].

For ICD-11, the ICD Concept Title, Postviral fatigue syndrome and its specified inclusions, Benign myalgic encephalomyelitis; and Chronic fatigue syndrome are coded at 8E49 in Chapter 08: Diseases of the nervous system, under parent: Other disorders of the nervous system [4].

For ICD-11, there are currently no exclusions for 8E49 Postviral fatigue syndrome and its specified inclusions, Benign myalgic encephalomyelitis; and Chronic fatigue syndrome under 6C20 Bodily distress disorder (which has subsumed and replaced ICD-10's F48.0 Neurasthenia and its inclusion, Fatigue syndrome, and most of ICD-10's F45.x Somatoform disorders).

In support of earlier submissions (which were rejected without adequate rationales being provided), I have already provided evidence that the new ICD-11 Concept Title term and disorder construct: Bodily distress disorder is being confused by academics, researchers and clinicians with the differently conceptualised, Fink et al (2010) Bodily distress syndrome (BDS), under which construct the authors subsume CFS, ME, IBS and Fibromyalgia under a single, unifying BDS diagnosis [5].

This was predicted and inevitable, since the term "Bodily distress disorder" has a history of being used interchangeably (since 2007) for the Fink et al (2010) "Bodily distress syndrome" construct.

While this concern has been acknowledged by Fuss, Jakob, Reed et al (2019) it remains unaddressed [6].

In their March 2017 submission, Chapman & Dimmock set out their rationale for proposing exclusions under 6C20 Bodily distress disorder for (Benign) myalgic encephalomyelitis; and Chronic fatigue syndrome (see Proposal item: 4.3 Exclusions under Bodily distress disorder) [7].

The authors recommended insertion of exclusions for these terms to mitigate the risk of misdiagnosis with, or misapplication of an additional diagnosis of Bodily distress disorder. Again, this proposal was rejected without adequate rationales being provided.


In this new submission for exclusions, I need to draw your attention to this book chapter:

Somatic symptom, bodily distress and related disorders in children and adolescents, 2019 edition. Fiertag O, Taylor S, Tareen A, Garralda E. Somatic symptom, bodily distress and related disorders in children and adolescents in Rey JM, Martin A (eds), IACAPAP e-Textbook of Child and Adolescent Mental Health. Geneva: International Association for Child and Adolescent Psychiatry and Allied Professions 2019 [8].

In this book chapter, the authors state:

"Chronic Fatigue Syndrome

"This condition, earlier described as "neurasthenia" and "post viral fatigue" in ICD-10, was not included in DSM-IV nor DSM-5. It is classified in ICD-11 under "other disorders of the nervous system" as "post viral fatigue syndrome." This category includes the illnesses termed "benign myalgic encephalitis" [sic] and "chronic fatigue syndrome." If the fatigue is not associated with a virus, it is recommended to consider coding it within "disorders of bodily distress," which can present with a single symptom (e.g., fatigue) or multiple symptoms (e.g., fatigue, pain, aches)."


However, not all cases of myalgic encephalomyelitis or chronic fatigue syndrome in adults or children are preceded by a viral infection [9].

The WHO, itself, has stated: "In response to the many proposals on Chronic fatigue syndrome, the WHO Secretariat has conducted a vast amount of research . . .The condition is characterized by chronic, profound, disabling, and unexplained fatigue and coinciding symptoms such as sleep problems or post-exertional malaise. There is no agreement on a reliable diagnostic symptom pattern. The etiology is still being discussed . . . As a result of this study, the category 'postviral fatigue' that is the indexing target, will not be changed as currently there is no evidence to suggest a better place. The entity will retain its name and remain within the Nervous system chapter. The Medical and Scientific Advisory Committee and the Classification and Statistics Advisory committee supported this decision. Team3 WHO 2019-Mar-04 - 22:58 UTC" [10].

Since ICD-11 includes no definitions, descriptions, criteria or any other textual content for any of the terms coded to 8E49 nor any guidelines for coders and clinicians on the application of this code, it is presumptuous and inappropriate for these authors to be recommending that paediatric Chronic fatigue syndrome "not associated with a virus" should be considered for coding under 6C20 Bodily distress disorder.

This book chapter, published this year by the International Association for Child and Adolescent Psychiatry and Allied Professions, and published ahead of implementation of ICD-11 by any member states, provides clear evidence that children and adolescents with a diagnosis of Chronic fatigue syndrome are at risk of the new Bodily distress disorder classification being misapplied.

It should also be noted that the WHO has published no field trial results or field trial evaluations on the validity, reliability, safety, prevalence and acceptability of the application of the core ICD-11 Bodily distress disorder construct in children and adolescents.

Will WHO classification experts and the MSAC and CSAC committees please consider the above when reviewing as yet unprocessed proposals and reconsider recommendations for insertion of exclusions for 8E49 Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome under 6C20 Bodily distress disorder?

If WHO classification experts, MSAC and CSAC are not prepared to approve insertion of exclusions for these terms (which would also put ICD-11 at variance with ICD-10 and the clinical modifications of ICD-10, which explicitly exclude G93.3 under Neurasthenia) will a rationale for their decision please be provided?

References:

1 ICD-10 Version 2016: https://icd.who.int/browse10/2016/en#/F48.0

2 International statistical classification of diseases and related health problems. 10th revision, Fifth edition, 2016. Volume 3 Alphabetical index. ISBN 9789241549165: https://apps.who.int/iris/handle/10665/246208
PDF: https://apps.who.int/iris/bitstream/handle/10665/246208/9789241549165-V3-eng.pdf

3 National Clinical Coding Standards ICD-10 5th Edition: https://www.rlbuht.nhs.uk/media/7418/5503-document-07.pdf

4 ICD-11 MMS Concept Title 8E49 Postviral fatigue syndrome: https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/569175314

5 Proposal for Deletion of the Entity: Bodily distress disorder: https://icd.who.int/dev11/proposals...lGroupId=c321880e-aa46-4328-ac19-7153c5e7a364

6 Fuss J, Lemay K, Stein DJ, Briken P, Jakob R, Reed GM and Kogan CS. (2019). Public stakeholders’ comments on ICD‐11 chapters related to mental and sexual health. World Psychiatry, 18: 233-235. https://onlinelibrary.wiley.com/doi/full/10.1002/wps.20635

7 Complex Hierarchical Changes Proposal: Rationale section: 4.3 Exclusions under Bodily distress disorder: https://icd.who.int/dev11/proposals...lGroupId=4b26ab6a-393f-4a39-9051-4ac1d4b1a55a

8 IACAPAP Textbook of Child and Adolescent Mental Health, SOMATIC SYMPTOM, Somatic symptom, bodily distress and related disorders in children and adolescents, 2019 edition. Fiertag O, Taylor S, Tareen A, Garralda E. Somatic symptom, bodily distress and related disorders in children and adolescents. In Rey JM, Martin A (eds), IACAPAP e-Textbook of Child and Adolescent Mental Health. Geneva: International Association for Child and Adolescent Psychiatry and Allied Professions 2019: https://iacapap.org/content/uploads/I.1-Somatic-synptom-disorders-2019.pdf

9 "The cause of ME/CFS remains unknown, although in many cases, symptoms may have been triggered by an infection or other prodromal event, such as "immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions" (Carruthers and van de Sande, 2005, p. 1)." National Academy of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. The National Academies Press. May 2015. https://www.nap.edu/catalog/19012/b...hronic-fatigue-syndrome-redefining-an-illness

10 Proposal Mechanism Rejection notice: Team3 WHO, November 19, 2018: https://icd.who.int/dev11/proposals...lGroupId=303c7493-554a-44c8-8e00-bd0c6c4cc6ef
 
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Dx Revision Watch said:
[U.S.] The next Full Committee Meeting of the National Committee on Vital and Health Statistics (NCVHS) is scheduled for November 13-14, 2019:

Meeting page and html Tentative Agenda: https://ncvhs.hhs.gov/meetings/full-committee-meeting-2/

PDF Tentative Agenda: https://ncvhs.hhs.gov/wp-content/uploads/2019/10/Agenda-Full-Committee-Meeting-November-13-14-2019.pdf

National Committee on Vital and Health Statistics
Full Committee Meeting
November 13-14, 2019

Cohen Building, Snow Room, Fifth Floor
330 Independence Avenue, SW
Washington, D.C. 20024

Call-In Information
No pre-registration required. Live broadcast is open to the public.

Meeting ID: 255 000 713
Password: Nov2019

Join Zoom Meeting Via Computer: https://zoom.us/j/255000713?pwd=SkRTb2Nna2xVMGNFM0lzejZpRkp1dz09

Join Zoom Meeting Via Phone:
+1 929 205 6099 US (New York)
+1 669 900 6833 US (San Jose)
888 475 4499 US Toll-free
877 853 5257 US Toll-free
Meeting ID: 255 000 713
Find your local number: https://zoom.us/u/afo2gLUlV

One tap mobile
+19292056099,,255000713# US (New York)
+16699006833,,255000713# US (San Jose)


Extract, Meeting Day One: Wednesday, November 13, 2019:

2-ncvchnov2019day1.png



If a draft letter to the Secretary, HHS or a copy of the finalized letter is released following this meeting, I will post a copy here.
Click to expand...



The full transcripts for this two day meeting and the NCVHS Letter of Recommendations to Secretary Azar, HHS, are now available:


Meeting page:

National Committee on Vital and Health Statistics Full Committee Meeting, Nov 13-14, 2019: https://ncvhs.hhs.gov/meetings/full-committee-meeting-2/

Full Transcript Meeting, Day One (Nov 13): https://ncvhs.hhs.gov/wp-content/uploads/2019/12/Transcript-Full-Committee-Meeting-November-13-2019.pdf

Agenda item: ICD-11 Follow-up and Action Page 10 (from Page 12 in my PDF)
Agenda item: Action on ICD-11 Page 48 (from Page 50 in my PDF)



November 25, 2019 NCVHS Letter to Secretary Azar, HHS:

Re: Preparing for Adoption of ICD-11 as a Mandated U.S. Health Data Standard:

https://ncvhs.hhs.gov/wp-content/uploads/2019/12/Recommendation-Letter-Preparing-for-Adoption-of-ICD-11-as-a-Mandated-US-Health-Data-Standard-final.pdf


Note, extract from Letter to Secretary Azar:

Attachment B: Outline of Research Questions (Attachment B, Page 3):

"ii. Is the change to ICD-11 an opportunity to harmonize with sector-specific terminologies e.g., ICPC, to better support primary care while enabling ICD-11 adoption or outputs "​


This refers to points raised by the Committee on Day One of the meeting:

Extract, transcript, Day One:


DR. PHILLIPS: . . .Is the change to ICD11 an opportunity to introduce - and I'll reread this, Rebecca - other sector-specific changes, i.e. ICPC for primary care, to better support the sector while enabling ICD-11 adoption or outputs? ICPC, that's the International Classification for Primary Care.

MS. HINES: So it reads is the change to ICD-11 an opportunity to introduce other sector specific changes i.e., ICPC, which we'll spell out, to better support the sector while enabling ICD-11 adoption or outputs?

MS. LOVE: Is it the ICPC changes that need adoption or the system or the classification?

DR. PHILLIPS: ICPC is a WHO recognized classification scheme that's used in several countries. It enables outputs of ICD-10 currently. It's being retrofitted to put out ICD-11 so it allows those outputs, but it allows the sectors' particular needs around classification to be used up front. So if you're going to make a change, why not make a change to one that actually benefits the sector but enables the other? It's a bigger kettle of fish, I understand, but it's the value proposition.​

[Extract ends]
​
---------------------------------------------

The ICPC is the WONCA managed, International Classification for Primary Care [1].

ICPC is formally recognised by the World Health Organization's Family of International Classifications (WHO-FIC) as a classification system for primary care. It is mapped to the International Classification of Diseases (ICD). This allows communication between the two classification systems and complementary usage. Ongoing cooperation between WONCA and the WHO-FIC network exists for the revision of ICD-10 to ICD-11 and harmonization with ICPC.


Note: the ICPC classification system for primary care should not be confused with the WHO's ICD-10 PHC, or the ICD-11 PHC, which has yet to be finalized and released. ICD-11 PHC is a 27 mental disorder management guideline intended for optional use in primary care and low resource settings and contains only mental disorders and no general medical conditions. (It is a misnomer to refer to the ICD-10 PHC or ICD-11 PHC as the "ICD for primary care" as it contains a small number of mental disorders only, contains no general medical conditions, and will not be a mandatory publication for WHO Member States.)

Note also, that for ICD-11, it will be possible to generate linearizations from the ICD-11 Mortality and Morbidity Linearization which capture various levels of detail to accommodate different use cases, including linearizations for use in primary care high and low resource settings.

1 WONCA International Classification of Primary Care (ICPC):
https://www.globalfamilydoctor.com/site/DefaultSite/filesystem/documents/Groups/WICC/International Classification of Primary Care Dec16.pdf

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

From transcript, Day Two (Page 148):

DR. STEAD: So, what you will then do is say monitor for response from HHS. Okay. ICD-11, we are done. We have monitor for further steps. We are basically done until the research is done, so that will be a year or two out at best.

MR. LANDEN: Again, we have some finalization to do with the letter that was produced yesterday [2], but until that research is completed or that communication plan is developed, there is nothing on our plate to do except monitor.​

[Extract ends]

2 NCVHS Letter to Secretary Azar, HHS: Re: Preparing for Adoption of ICD-11 as a Mandated U.S. Health Data Standard, November 25, 2019
https://ncvhs.hhs.gov/wp-content/uploads/2019/12/Recommendation-Letter-Preparing-for-Adoption-of-ICD-11-as-a-Mandated-US-Health-Data-Standard-final.pdf
 

Attachments

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New for January 2020:

CDC (U.S.) announces a Beta version browser tool for ICD-10-CM:

https://www.cdc.gov/nchs/icd/icd10cm.htm

NEW ICD-10-CM Browser Tool

What is the ICD-10-CM Browser Tool [Beta Version 1/3/2020]

The new National Center for Health Statistics ICD-10-CM Browser tool is here https://icd10cmtool.cdc.gov/

This user-friendly web-based query application allows users to search for codes from the International Classification of Diseases, 10th Revision, Clinical Modification (ICD-10-CM) and provides instructional information needed to understand the usage of ICD-10-CM codes. The application provides access to multiple fiscal year version sets that are available with real-time comprehensive results via the search capabilities.

The National Center for Health Statistics updates ICD-10-CM on an annual basis. In addition to the new browser tool, ICD-10-CM and all approved updates to the classification are still available on this webpage for public use.

ICD-10-CM Browser Tool https://icd10cmtool.cdc.gov/

Features include:

Online user’s guide

Preface
  • The Official ICD–10–CM Coding Guidelines
  • ICD–10–CM Tabular List of Diseases and Injuries
  • ICD–10–CM Index to Diseases and Injuries
  • ICD–10–CM External Cause of Injuries Index
  • ICD–10–CM Table of Neoplasms
  • ICD–10–CM Table of Drugs and Chemicals
Functionality features include:
  • Search Index for main term or subterms
  • Search by ICD–10–CM code
  • Pop-up instructional notes
  • Ability to toggle from the Index to the Tabular list.
etc.

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The Browser Tool release for FY2020 can be accessed here: https://icd10cmtool.cdc.gov/?fy=FY2020

Diseases/disorders can be searched for by term (via the Alphabetical Index to Diseases and Injuries search field on the left of the page) or searched for by code (via the Tabular List search field on the right of the page).

(Clicking on a code displayed in the Index term list will also display its entry in the Tabular List.)

Inclusion terms to Concept Title terms in the Tabular List are displayed by clicking on the blue paperclip symbol in the Legend.

Excludes1 and Excludes2 can be displayed by clicking on the red circled 1 and 2 symbols in the Legend.


Screenshots from the ICD-10-CM Browser Tool:

Index search field results:

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Tabular List search field results:

icd10cmbrowsertooltabular1.png


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Note that in addition to this new ICD-10-CM browser tool, PDFs for the ICD-10-CM Index, Tabular List, Guideline and associated documentation will still be available to download from the CDC ICD-10-CM webpage.


There is a Help Guide to navigating the new browser tool here: https://icd10cmtool.cdc.gov/static/ICD-10-CM-Web-Help.pdf
 
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It's taken since 2014 to get there, but we've done it!

WHO/ICD Revision has approved the addition of Exclusions for 8E49 Postviral fatigue syndrome; 8E49 Benign myalgic encephalomyelitis; and 8E49 Chronic fatigue syndrome under ICD-11's Bodily distress disorder:


On December 30, 2014, I submitted a proposal and rationale for addition of Exclusions for Benign myalgic encephalomyelitis; Chronic fatigue syndrome; and Postviral fatigue syndrome under ICD-11's Bodily distress disorder.

In 2014/15, I had also discussed the need for exclusions for these terms under BDD with ICD Revision's Dr Geoffrey Reed, via personal correspondence and via the Proposal Mechanism comments facility.

This proposal was subsequently marked by the ICD-11 Beta Admin team as "Rejected".

Further proposals and rationales for Exclusions for these terms under Bodily distress disorder were submitted jointly by Chapman & Dimmock (on March 27, 2017, as part of a larger submission) and separately by Suzy Chapman (on March 28, 2017). These submissions were also rejected (in February and March, 2019).

On December 02, 2019, I resubmitted for the addition of Exclusions for Benign myalgic encephalomyelitis; Chronic fatigue syndrome; and Postviral fatigue syndrome.

In my accompanying rationale, I referenced earlier rationales for the need for exclusions but also included quotes from the publication: IACAPAP Textbook of Child and Adolescent Mental Health, Somatic symptom, bodily distress and related disorders in children and adolescents, 2019 edition [1].

1 Fiertag O, Taylor S, Tareen A, Garralda E. Somatic symptom, bodily distress and related disorders in children and adolescents. In Rey JM, Martin A (eds), IACAPAP e-Textbook of Child and Adolescent Mental Health. Geneva: International Association for Child and Adolescent Psychiatry and Allied Professions 2019: https://iacapap.org/content/uploads/I.1-Somatic-synptom-disorders-2019.pdf

(I will post a copy of the rationale I submitted in the next post.)


I am delighted to confirm that my December 02, 2019 proposal for exclusions has been accepted.

The legend for the proposal's status was changed from "Submitted" to "Implemented" on January 17 and exclusions for these terms have been added to the current version of the orange ICD-11 Maintenance Browser.

When the WHO posts the next release of the blue ICD-11 MMS Browser, later this year, it should incorporate the addition of these exclusions for the 8E49 coded terms.


So this is how the listing for Bodily distress disorder now appears in the orange ICD-11 Maintenance platform since the approval of addition of exclusions, on January 17:

https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/767044268


bdd1.png



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From the Proposal Change History:

bddeximplemented1.png
 
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Rationale for Proposal for Addition of Exclusions (submitted December 02, 2019):


Suzy Chapman

Content Enhancement Proposal
2019-Dec-02 - 11:53#296I


The author has no affiliations or conflicts of interest to declare.

Rationale:

In ICD-10, there is an exclusion for G93.3 Postviral fatigue syndrome under F48.0 Neurasthenia and its inclusion, Fatigue syndrome [1]. Chronic fatigue syndrome is indexed in Volume 3: Alphabetical Index to the G93.3 code [2].

The NHS Digital publication: National Clinical Coding Standards ICD-10 5th Edition (2018) provides the following guidance (on page 84):

"Caution is required when 'fatigue syndrome' is used as a diagnosis within the medical record. The Alphabetical Index takes the coder to F48.0 Neurasthenia which includes fatigue syndrome. However many patients actually have chronic fatigue syndrome, which is an alternative name for the postviral fatigue syndrome or myalgic encephalomyelitis (ME). Chronic fatigue syndrome is coded to G93.3 Postviral fatigue syndrome. Coders should therefore clarify the nature of the fatigue with the responsible consultant before assigning a code." [3].

For ICD-11, the ICD Concept Title, Postviral fatigue syndrome and its specified inclusions, Benign myalgic encephalomyelitis; and Chronic fatigue syndrome are coded at 8E49 in Chapter 08: Diseases of the nervous system, under parent: Other disorders of the nervous system [4].

For ICD-11, there are currently no exclusions for 8E49 Postviral fatigue syndrome and its specified inclusions, Benign myalgic encephalomyelitis; and Chronic fatigue syndrome under 6C20 Bodily distress disorder (which has subsumed and replaced ICD-10's F48.0 Neurasthenia and its inclusion, Fatigue syndrome, and most of ICD-10's F45.x Somatoform disorders).

In support of earlier submissions (which were rejected without adequate rationales being provided), I have already provided evidence that the new ICD-11 Concept Title term and disorder construct: Bodily distress disorder is being confused by academics, researchers and clinicians with the differently conceptualised, Fink et al (2010) Bodily distress syndrome (BDS), under which construct the authors subsume CFS, ME, IBS and Fibromyalgia under a single, unifying BDS diagnosis [5].

This was predicted and inevitable, since the term "Bodily distress disorder" has a history of being used interchangeably (since 2007) for the Fink et al (2010) "Bodily distress syndrome" construct.

While this concern has been acknowledged by Fuss, Jakob, Reed et al (2019) it remains unaddressed [6].

In their March 2017 submission, Chapman & Dimmock set out their rationale for proposing exclusions under 6C20 Bodily distress disorder for (Benign) myalgic encephalomyelitis; and Chronic fatigue syndrome (see Proposal item: 4.3 Exclusions under Bodily distress disorder) [7].

The authors recommended insertion of exclusions for these terms to mitigate the risk of misdiagnosis with, or misapplication of an additional diagnosis of Bodily distress disorder. Again, this proposal was rejected without adequate rationales being provided.

In this new submission for exclusions, I need to draw your attention to this book chapter:

Somatic symptom, bodily distress and related disorders in children and adolescents, 2019 edition. Fiertag O, Taylor S, Tareen A, Garralda E. Somatic symptom, bodily distress and related disorders in children and adolescents in Rey JM, Martin A (eds), IACAPAP e-Textbook of Child and Adolescent Mental Health. Geneva: International Association for Child and Adolescent Psychiatry and Allied Professions 2019 [8].

In this book chapter, the authors state:

"Chronic Fatigue Syndrome

"This condition, earlier described as "neurasthenia" and "post viral fatigue" in ICD-10, was not included in DSM-IV nor DSM-5. It is classified in ICD-11 under "other disorders of the nervous system" as "post viral fatigue syndrome." This category includes the illnesses termed "benign myalgic encephalitis" [sic] and "chronic fatigue syndrome." If the fatigue is not associated with a virus, it is recommended to consider coding it within "disorders of bodily distress," which can present with a single symptom (e.g., fatigue) or multiple symptoms (e.g., fatigue, pain, aches)."

However, not all cases of myalgic encephalomyelitis or chronic fatigue syndrome in adults or children are preceded by a viral infection [9].

The WHO, itself, has stated: "In response to the many proposals on Chronic fatigue syndrome, the WHO Secretariat has conducted a vast amount of research . . .The condition is characterized by chronic, profound, disabling, and unexplained fatigue and coinciding symptoms such as sleep problems or post-exertional malaise. There is no agreement on a reliable diagnostic symptom pattern. The etiology is still being discussed . . . As a result of this study, the category 'postviral fatigue' that is the indexing target, will not be changed as currently there is no evidence to suggest a better place. The entity will retain its name and remain within the Nervous system chapter. The Medical and Scientific Advisory Committee and the Classification and Statistics Advisory committee supported this decision. Team3 WHO 2019-Mar-04 - 22:58 UTC" [10].

Since ICD-11 includes no definitions, descriptions, criteria or any other textual content for any of the terms coded to 8E49 nor any guidelines for coders and clinicians on the application of this code, it is presumptuous and inappropriate for these authors to be recommending that paediatric Chronic fatigue syndrome "not associated with a virus" should be considered for coding under 6C20 Bodily distress disorder.

This book chapter, published this year by the International Association for Child and Adolescent Psychiatry and Allied Professions, and published ahead of implementation of ICD-11 by any member states, provides clear evidence that children and adolescents with a diagnosis of Chronic fatigue syndrome are at risk of the new Bodily distress disorder classification being misapplied.

It should also be noted that the WHO has published no field trial results or field trial evaluations on the validity, reliability, safety, prevalence and acceptability of the application of the core ICD-11 Bodily distress disorder construct in children and adolescents.

Will WHO classification experts and the MSAC and CSAC committees please consider the above when reviewing as yet unprocessed proposals and reconsider recommendations for insertion of exclusions for 8E49 Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome under 6C20 Bodily distress disorder?

If WHO classification experts, MSAC and CSAC are not prepared to approve insertion of exclusions for these terms (which would also put ICD-11 at variance with ICD-10 and the clinical modifications of ICD-10, which explicitly exclude G93.3 under Neurasthenia) will a rationale for their decision please be provided?

References:

1 ICD-10 Version 2016: https://icd.who.int/browse10/2016/en#/F48.0

2 International statistical classification of diseases and related health problems. 10th revision, Fifth edition, 2016. Volume 3 Alphabetical index. ISBN 9789241549165: https://apps.who.int/iris/handle/10665/246208

PDF: https://apps.who.int/iris/bitstream/handle/10665/246208/9789241549165-V3-eng.pdf

3 National Clinical Coding Standards ICD-10 5th Edition: https://www.rlbuht.nhs.uk/media/7418/5503-document-07.pdf

4 ICD-11 MMS Concept Title 8E49 Postviral fatigue syndrome: https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/569175314

5 Proposal for Deletion of the Entity: Bodily distress disorder: https://icd.who.int/dev11/proposals...lGroupId=c321880e-aa46-4328-ac19-7153c5e7a364

6 Fuss J, Lemay K, Stein DJ, Briken P, Jakob R, Reed GM and Kogan CS. (2019). Public stakeholders’ comments on ICD‐11 chapters related to mental and sexual health. World Psychiatry, 18: 233-235. https://onlinelibrary.wiley.com/doi/full/10.1002/wps.20635

7 Complex Hierarchical Changes Proposal: Rationale section: 4.3 Exclusions under Bodily distress disorder: https://icd.who.int/dev11/proposals...lGroupId=4b26ab6a-393f-4a39-9051-4ac1d4b1a55a

8 IACAPAP Textbook of Child and Adolescent Mental Health, SOMATIC SYMPTOM, Somatic symptom, bodily distress and related disorders in children and adolescents, 2019 edition. Fiertag O, Taylor S, Tareen A, Garralda E. Somatic symptom, bodily distress and related disorders in children and adolescents. In Rey JM, Martin A (eds), IACAPAP e-Textbook of Child and Adolescent Mental Health. Geneva: International Association for Child and Adolescent Psychiatry and Allied Professions 2019: https://iacapap.org/content/uploads/I.1-Somatic-synptom-disorders-2019.pdf

9 "The cause of ME/CFS remains unknown, although in many cases, symptoms may have been triggered by an infection or other prodromal event, such as "immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions" (Carruthers and van de Sande, 2005, p. 1)." National Academy of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. The National Academies Press. May 2015. https://www.nap.edu/catalog/19012/b...hronic-fatigue-syndrome-redefining-an-illness

10 Proposal Mechanism Rejection notice: Team3 WHO, November 19, 2018: https://icd.who.int/dev11/proposals...lGroupId=303c7493-554a-44c8-8e00-bd0c6c4cc6ef
 
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Michiel Tack said:
Congratulations @Dx Revision Watch , job well done
Click to expand...

Thank you Michiel - it is good news, indeed.

Unfortunately, we still need approval for the deprecation of "Benign" from "Benign myalgic encephalomyelitis". I have a request in for provision of the WHO/ICD Revision's rationale for not approving this proposal since no rationale for this specific decision was provide by them in early 2019.

Suzy
 
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