ICD-11 Beta draft: Rationale for Proposal for Deletion of proposed new category: Bodily distress disorder

March 8, 2017 by

Post #328 Shortlink: http://wp.me/pKrrB-4dc

View on ICD-11 Proposal Mechanism: https://tinyurl.com/submissionDeleteBDD

(Registration with the Beta draft required in order to view proposals via the Beta draft Proposal Mechanism.)

PDF: ICD-11 Bodily distress disorder submission

Proposal submitted by Suzy Chapman (Dx Revision Watch) via ICD-11 Beta draft Proposal Mechanism

Submitted: March 1, 2017 (Remains unprocessed)

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

Rationale for Proposal for Deletion of the Entity: Bodily distress disorder

1: The acronym “BDD” is already in use to indicate Body Dysmorphic Disorder [1].

2: With limited field studies, there is currently no substantial body of evidence for the validity, reliability, utility, prevalence, safety and acceptability of the S3DWG’s proposed disorder construct. However, the focus of this rationale is the proposed nomenclature.

The Somatic Distress and Dissociative Disorders Working Group (S3DWG) proposes to name its construct, “bodily distress disorder (BDD)” – a term that is already used by researchers and in the field interchangeably with the disorder term, “bodily distress syndrome (BDS).”

“Bodily distress syndrome” is a conceptually divergent disorder construct: differently defined and characterized, with different criteria that are already operationalized in Denmark and beyond, in research and clinical settings, and which potentially include a different patient set to that described in the S3DWG’s proposal [2].

As defined for the ICD-11 core version, the S3DWG’s “bodily distress disorder” construct has stronger conceptual and characterization alignment with DSM-5 “somatic symptom disorder (SSD)” than with Fink et al. (2010) “bodily distress syndrome” [3][4].

It is noted that “Somatic symptom disorder” is listed under Synonyms for the BDD entry in the ICD-11 Beta draft.

The defining feature of both the S3DWG’s “bodily distress disorder” and DSM-5 “somatic symptom disorder” is the removal of the distinction between “medically explained” and “medically unexplained” somatic complaints. Rather than define the disorder on the basis of the absence of a known medical cause, instead, specific psychological features are required in order to fulfill the criteria.

The S3DWG’s BDD is characterized by “the presence of bodily symptoms that are distressing to the individual and excessive attention directed toward the symptoms which may be manifest by repeated contact with health care providers.”

“Excessive attention is not alleviated by appropriate clinical examination and investigations and appropriate reassurance.”

“If a medical condition is causing or contributing to the symptoms, the degree of attention is clearly excessive in relation to its nature and progression.”

“Bodily symptoms and associated distress are persistent, being present on most days for at least several months and are associated with significant impairment in personal, family, social, educational, occupational or other important areas of functioning.”

The S3DWG’s “bodily distress disorder” may involve a single unspecified somatic symptom or multiple unspecified symptoms that may vary over time, in association with the disorder’s other defining features.

For DSM-5 “somatic symptom disorder,” the centrality of medically unexplained symptoms in order to meet the criteria is similarly de-emphasized and replaced by psychological responses to distressing, persistent symptoms: “excessive thoughts, behaviours and feelings” or “excessive preoccupation” with the bodily symptom or associated health concerns [5].

As with BDD, for SSD, the symptoms may or may not be associated with another medical condition. Some patients with general medical diagnoses, such as cancer, cardiovascular disease or diabetes, or patients diagnosed with the so-called “functional somatic syndromes” may qualify for a diagnosis of SSD if they are perceived as experiencing disproportionate and excessive thoughts and feelings or using maladaptive coping strategies in response to their illness, despite the reassurance of their clinicians [6].

As with the S3DWG’s defining of BDD, for SSD, there is no requirement for a specific number of complaints from among specified symptom groups to meet the criteria: so no symptoms counts or symptom clusters from body systems required for either.

To meet the SSD criteria: at least one symptom of at least six months duration and at least one of three psychological criteria are required: disproportionate thoughts about the seriousness of the symptom(s); or a high level of health anxiety; or devoting excessive time and energy to symptoms or health concerns; and for the symptoms to be significantly distressing or disruptive to daily life.

Though they differ somewhat in the characterization of their severity specifiers, the S3DWG’s defining of BDD and DSM-5 SSD may be considered essentially similar in conceptualization: no distinction between “medically explained” and “medically unexplained”; a much simplified criteria set to those defining the somatoform disorders, based on “excessive” or “disproportionate” psychological responses to persistent distressing symptoms, and with significant impairment or disruption to functioning.

Whereas, for the Fink et al. (2010) “bodily distress syndrome (BDS),” psychological or behavioural characteristics are not part of the criteria: symptom patterns or clusters from organ/body systems (cardiopulmonary; gastrointestinal; musculoskeletal or general symptoms) are central [2]. The diagnosis is exclusively made on the basis of the somatic symptoms, their complexity and duration, with moderate to severe impairment of daily life. There is a “Moderate: single organ” type and a “Severe: multi-organ” type.

The Fink et al. (2010) BDS construct is considered by its authors to have the ability to capture the somatoform disorders, neurasthenia, “functional symptoms” and the so-called “functional somatic syndromes” under a single, unifying disorder construct which subsumes CFS, ME, fibromyalgia and IBS (which are discretely classified within other chapters of ICD-10), noncardiac chest pain, chronic pain disorder, MCS and some others [7][8][9].

(The various so-called specialty “functional somatic syndromes” are considered by the authors to be an artifact of medical specialization and manifestations of a similar, underlying disorder with a common, hypothesized aetiology.)

Contrast this with the S3DWG’s BDD construct, which makes no assumptions about aetiology and does not exclude symptoms associated with general medical conditions; whereas, for Fink et al. BDS, “If the symptoms are better explained by another disease, they cannot be labelled BDS.”

That DSM-5 SSD and Fink et al. (2010) BDS are differently conceptualized, with different criteria sets, potentially capturing different patient populations has been acknowledged by SSD work group chair, Joel E Dimsdale, and by Fink, Henningsen and Creed [10][11]. In the literature, however, one observes frequent instances where the term “bodily distress disorder” has been used when what is actually being discussed within the paper or editorial is the Fink et al. (2010) “bodily distress syndrome (BDS)” disorder construct.

For example, “bodily distress disorder” is used interchangeably with “bodily distress syndrome” in the editorial (Creed et al. 2010): Is there a better term than “medically unexplained symptoms”? [1].

In this (Rief and Isaac 2014) editorial: The future of somatoform disorders: somatic symptom disorder, bodily distress disorder or functional syndromes? the authors are using the term, “bodily distress disorder” while clearly discussing the Fink et al. (2010) BDS construct [12].

The S3DWG’s proposed term is seen, here, as “Bodily distress disorder (Fink and Schroder 2010)” in Slide #3 of the symposium presentation: An introduction to “medically unexplained” persistent physical symptoms. (Professor Trudie Chalder, Department of Psychological Medicine, King’s Health Partners, 2014) [13].

This recent paper: Medium- and long-term prognostic validity of competing classification proposals for the former somatoform disorders (Schumacher et al. 2017) compares prognostic validity of DSM-5 “somatic symptom disorder (SSD)” with “bodily distress disorder (BDD)” and “polysymptomatic distress disorder (PSDD)” and discusses their potential as alternatives to SSD for the replacement of the somatoform disorders for the forthcoming ICD-11 [14].

The authors state, “the current draft of the WHO group is based on the BDD proposal.” But the authors have confirmed that for their study, they had operationalized “Bodily distress disorder based on Fink et al. 2007” [15].

In the (Fink et al. 2007) paper: Symptoms and syndromes of bodily distress: an exploratory study of 978 internal medical, neurological, and primary care patients, the authors conclude: “We identified a general, distinct, bodily distress syndrome or disorder that seems to encompass the various functional syndromes advanced by different medical specialties as well as somatization disorder and related diagnoses of the psychiatric classification.”

There are other examples in the literature and in the field. But these suffice to demonstrate that the term, “bodily distress disorder” is already used synonymously with disorder term “bodily distress syndrome (BDS)” and that researchers/clinicians, including Fink et al., do not differentiate between the two.

If researchers/clinicians do not differentiate between “bodily distress syndrome” and “bodily distress disorder” (and in some cases, one observes the conflations, “bodily distress syndrome or disorder” and “bodily distress syndrome/disorder”), has the S3DWG considered the difficulties and implications for maintaining the discrete identity of its proposed disorder, once ICD-11 is in the hands of its end users – clinicians, allied health professionals and coders; or considered the implications for patients and the particular vulnerability of those diagnosed with one of the so-called, “functional somatic syndromes”; or the implications for data reporting and analysis?

The S3DWG presented its emerging proposals for subsuming most of the ICD-10 somatoform disorder categories between F45.0 – F45.9, and F48.0 Neurasthenia, under a new single category which it proposes to call “bodily distress disorder (BDD)” in 2012 [3] and again in 2016 [4].

Thus far, the S3DWG has published no rationale for its recommendation to repurpose a disorder term already strongly associated with the Fink et al. (2010) disorder construct.

Neither has the group discussed nor acknowledged within its papers the implications for confusion and conflation between its own SSD- like “BDD” construct and the Fink et al. “bodily distress syndrome (BDS).”

Nor has the group’s output discussed the potential difficulties and implications for maintaining construct integrity within and beyond ICD-11.

There is no justification for introducing a new disorder category into ICD-11 that has greater conceptual alignment with the DSM-5 SSD construct but is proposed to be assigned a disorder name that is closely associated with a divergent (and operationalized) construct/criteria set, that is already in use in research and clinical settings.

This is unsafe and unsound classificatory practice.

This proposed disorder name should be rejected by the Project Lead for the revision of the Mental or behavioural disorders chapter and by the Joint Task Force that is overseeing the finalization of ICD-11 MMS.

If the S3DWG is unprepared or unwilling to reconsider and recommend an alternative disorder name then I submit that the current proposal to replace the somatoform disorders with a single “bodily distress disorder” category should be abandoned.

ICD-11 should proceed with the ICD-10 status quo, or retire or deprecate the somatoform disorder categories for the next edition.

It is perhaps germane that in 2010, three years prior to the finalization of DSM-5, Creed et al. had advanced: “Somatic symptom disorder is not a term that is likely to be embraced enthusiastically by doctors or patients; it has an uncertain core concept, dubious wide acceptability across cultures and does not promote multidisciplinary treatment. In our discussion, the terms which fit most closely the criteria we have set out above were the following: bodily distress (or stress) syndrome/ disorder, psychosomatic or psychophysical disorder, functional (somatic) syndrome or disorder.” [1]

The authors conclude that “bodily distress disorder” best fitted their “Criteria to judge the value of alternative terms for ‘medically unexplained symptoms.'”

It would appear that the term “bodily distress disorder” can mean anything anyone chooses it to mean – which might be admissible for Humpty Dumpty but unsound classificatory practice for ICD-11 [16].

References:

1 Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M, White P. Is there a better term than “medically unexplained symptoms”? J Psychosom Res. 2010 Jan;68(1):5-8. doi:10.1016/j.jpsychores.2009.09.004. [PMID: 20004295]

2 Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res. 2010 May;68(5):415-26. [PMID: 20403500]

3 Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. doi: 10.3109/09540261.2012.741063. [PMID: 23244611]

4 Gureje O, Reed GM. Bodily distress disorder in ICD-11: problems and prospects. World Psychiatry. 2016 Oct;15(3):291-292. doi: 10.1002/wps.20353. [PMID: 27717252]

5 American Psychiatric Association. (2013). Somatic Symptom and Related Disorders. In Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.

6 Frances A, Chapman S. DSM-5 somatic symptom disorder mislabels medical illness as mental disorder. Aust N Z J Psychiatry. 2013 May;47(5):483-4. [PMID: 23653063]

7 Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS. Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Fam Pract. 2013 Feb;30(1):76-87. doi: 10.1093/fampra/cms037. Epub 2012 Jul 28. [PMID: 22843638]

8 Ivbijaro G, Goldberg D. Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (MUS). Ment Health Fam Med. 2013 Jun;10(2):63-4. [PMID: 24427171]

9 Goldberg DP, Reed GM, Robles R, Bobes J, Iglesias C, Fortes S, de Jesus Mari J, Lam TP, Minhas F, Razzaque B et al. Multiple somatic symptoms in primary care: A field study for ICD-11 PHC, WHO’s revised classification of mental disorders in primary care settings. J Psychosom Res. 2016 Dec;91:48-54. doi:10.1016/j.jpsychores.2016.10.002. Epub 2016 Oct 4. [PMID: 27894462]

10 Medically Unexplained Symptoms, Somatisation and Bodily Distress: Developing Better Clinical Services, Francis Creed, Peter Henningsen, Per Fink (Eds), Cambridge University Press, 2011.

11 Frances Creed and Per Fink. Presentations, Research Clinic for Functional Disorders Symposium, Aarhus University Hospital, May 15, 2014.

12 Rief W, Isaac M. The future of somatoform disorders: somatic symptom disorder, bodily distress disorder or functional syndromes? Curr Opin Psychiatry September 2014 – Volume 27 – Issue 5 – p315–319. [PMID: 25023885]

13 Chalder, T. An introduction to “medically unexplained” persistent physical symptoms. Presentation, Department of Psychological Medicine, King’s Health Partners, 2014. [Accessed 27 February 2017]

14 Schumacher S, Rief W, Klaus K, Brähler E, Mewes R. Medium- and long-term prognostic validity of competing classification proposals for the former somatoform disorders. Psychol Med. 2017 Feb 9:1-14. doi: 10.1017/S0033291717000149. [PMID: 28179046]

15 Fink P, Toft T, Hansen MS, Ornbol E, Olesen F. Symptoms and syndromes of bodily distress: an exploratory study of 978 internal medical, neurological, and primary care patients. Psychosom Med. 2007 Jan;69(1):30-9. [PMID: 17244846]

16 Carroll L. Alice’s Adventures in Wonderland. 1885. Macmillan.

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Filed under Allen Frances, American Psychiatric Association (APA), Bodily distress disorder, Bodily distress syndrome, Diagnostic classification, Functional Somatic Syndrome (FSS), ICD-11 Beta Draft, MUS, Per Fink, Somatic Symptom Disorder, WHO (World Health Organization) Tagged with , , , , , , , , ,

Update to Letter to key Revision personnel re Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform

June 22, 2015 by

Post #324 Shortlink: http://wp.me/pKrrB-46A

Update at February 23, 2016: Since no proposals and rationales for the ICD-10 G93.3 legacy terms were released in September or December 2015, I contacted ICD’s Dr Robert Jakob, again. Dr Jakob told me on February 2, 2016 that “[ICD-11 Revsion is] still working on the extensive review and the conclusions.”

This report is an update to Post #322:

Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform: Letter to key Revision personnel

Eight years into the revision process and stakeholders still don’t know how ICD Revision proposes to classify the ICD-10 G93.3 legacy terms for ICD-11.

In ICD-10, the (G93.3) Title term is Postviral fatigue syndrome; Benign myalgic encephalomyelitis is the Inclusion term under G93.3; Chronic fatigue syndrome is included in the Index only, and indexed to the G93.3 code [1].

By 2012, the public version of the ICD-11 Beta draft had the three terms listed as in the screenshot, below – still under the Diseases of the nervous system chapter, but with a change of relationship between the three terms.

At that point, Chronic fatigue syndrome was being proposed as a new ICD Title term; Benign myalgic encephalomyelitis* was specified as the Inclusion term (indicated in the draft by hover text over the asterisk which is not displaying in this screenshot).

Postviral fatigue syndrome, previously designated as Title code in ICD-10, was now located under Synonyms, in a list of alternative and historical terms imported from other terminology systems and health informatics sources, including two terms specific to Chapter 18: Symptoms, signs etc. of the U.S. ICD-10-CM clinical modification [4].

Beta12

Source: ICD-11 Beta drafting platform, public version, July 25, 2012.

 

In early 2013, ICD Revision removed the entry for Chronic fatigue syndrome and its associated terms from the public version of the Beta draft; from that point on, none of the terms were accessible in any Linearization.

(In the version of the Beta that the public sees, there are no holding pens viewable for categories “Needing a decision to be made” and no tab for “Category Notes and Decisions” which might indicate the rationale for the temporary or permanent absence of a category from the draft.)

Although a Change History function was incorporated into the public Beta in March, no Change History is available for these terms. The Topic Advisory Group (TAG) for Neurology has published no progress reports on emerging proposals for scrutiny and discussion.

So for over 2 years, now, stakeholders have been unable to monitor evolving proposals for the classification of these G93.3 legacy entities within ICD-11. The continued absence of these terms hinders submission of comments and suggestions on proposed chapter location(s), parent classes, hierarchies, inclusions, exclusions, definitions or other Content Model descriptive text.

 

Request for release of information on current status of proposals

On June 8, I sent a letter to Bedirhan Üstün (WHO/ICD Revision Coordinator), Cc’d to key ICD Revision personnel and the recently assembled ICD Revision Project Management Team, requesting an update on the status of proposals for these terms and their restoration to the draft [5]. Read letter here

On Friday, June 19, Anneke Schmider (WHO Technical Officer, ICD Revision Project Manager) facilitated a conference call with myself and Dr Robert Jakob (WHO ICD classifications, ICD Revision Steering Group) in which Dr Jakob responded to my letter, having obtained a progress report from TAG Neurology.

NB: It was not the purpose of this discussion to advance my own views on how these terms should be represented within ICD-11 but to elicit clarifications on the current status of proposals.

 

Summary of main points from our discussion:

• TAG Neurology retains responsibility for these three terms.

• None of the sub-working groups that sit under TAG Neurology has specific responsibility for these terms.

• TAG Neurology is still reviewing the literature and has yet to reach consensus about where to classify these terms within ICD-11.

• Dr Jakob says he can be “crystal clear” that there is no proposal to classify the ICD-10 G93.3 legacy terms under the Mental and behavioural disorders chapter.

JakobJune155

The ICD-11 principle of multiple parenting was discussed in general terms: multiple parenting allows the same disease to be expressed in two (or more) places in the ICD-11 linearizations. A disease or disorder category will be located under a primary parent class within one chapter but may also be searchable under a secondary (or tertiary) parent within another chapter, whilst retaining the code assigned in the primary location. (See ICD-11 Multiple parenting Slides 42-48)

Because TAG Neurology is still working towards consensus, Dr Jakob would not be drawn on the following:

• whether relocating one or more of these terms from the Diseases of the nervous system to an alternative chapter(s) was under consideration;

• whether retaining one or more of these terms within the Diseases of the nervous system chapter but secondary parenting under an alternative chapter(s) was under consideration;

• what existing parent classes were being considered for locating these terms under;

• whether the creation of any new parent classes was being considered for these terms;

• whether any changes in the relationship between the three terms, as they had stood in the Beta draft in early 2013, have already been agreed or remain under consideration (ie any changes to which of the terms are identified as ICD Title terms, which are specified as Inclusion terms and which are listed as Synonyms).

• which of the terms are proposed to be assigned a Definition and other Content Model descriptive text and where definition(s) would be sourced from.

It remains unclarified, therefore, whether ICD-11 intends to define CFS discretely from BME. Also unclarified: whether exclusions for these terms are proposed to be inserted under categories such as Bodily distress disorder; Fatigue [previously Malaise and fatigue in ICD-10]; and a proposed new Diseases of the nervous system parent term, Functional clinical forms of the nervous system (a proposal that TAG Mental Health opposes).

I have already submitted requests via the Proposal Mechanism that PVFS, BME and CFS are inserted under Exclusions to Bodily distress disorder, and Fatigue.

 

With regard to a date by which we might anticipate proposals being released:

• The Beta draft was frozen on May 31, 2015. The Beta Comment facility is open and stakeholders can register to comment on the draft or submit formal proposals for changes and enhancements to proposals via the Proposals Mechanism. Another frozen release is expected in August. (But while TAG Neurology’s proposals remain absent from the Beta and unpublished elsewhere, stakeholders are in no position to comment on the TAG proposals or submit suggestions for modifications to TAG proposals.)

• Dr Jakob says that in September 2015, ICD Revision plans to post various materials relating to the development process on the WHO/ICD website for public scrutiny, this to possibly include rationales, and documents relating to the abridged Primary Care version of ICD-11.

• If TAG Neurology’s proposals for the G93.3 legacy terms are not ready for September release, then Dr Jakob projected their release towards the end of December 2015.

• The target date for presentation of ICD-11 for World Health Assembly (WHA) approval is currently proposed for May 2018. There would be a period for public review and comment prior to presentation for adoption.

I will update on the status of proposals for these terms as soon as further information becomes available.

It is regrettable that stakeholders are little better informed than they were two years ago.

 

Bodily stress syndrome (S3DWG); Bodily stress syndrome (PCCG)

My longstanding concerns regarding the proposals of the WHO Working Group on Somatic Distress and Dissociative Disorders (S3DWG) for the revision of the ICD-10 Somatoform disorders and the alternative proposals of the ICD-11 Primary Care Consultation Group (PCCG) were beyond the scope of my letter to Dr Üstün and my discussions with Dr Jakob in response to that letter.

However, I advised Dr Jakob that my concerns around proposals for the S3DWG’s “Bodily distress disorder” and the Primary Care Consultation Group’s “Bodily stress syndrome” have been discussed with ICD Revision’s, Dr Geoffrey Reed, and in formal submissions via the Proposals Mechanism and Beta Comment facility for the consideration of TAG Mental Health [6][7].

 

References and related posts

1 ICD-10 Version: 2015 Chapter VI Diseases of the nervous system, G93.3

2 ICD-11 Beta drafting platform (Public version)

Frozen release at May 31, 2015

3 ICD-11 Beta Proposal Mechanism (Registration required for access)

4 Briefing paper on ICD-11 and PVFS, ME and CFS: Part 2, Dx Revision Watch

5 Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform: Letter to key Revision personnel, Dx Revision Watch

6 Personal correspondence; ICD-11 Beta Proposal Mechanism.

7 Comment submitted to ICD-11 Topic Advisory Group for Mental Health re: Bodily distress disorder, Suzy Chapman

 

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Filed under Bedirhan Üstün, Bodily distress disorder, Chronic fatigue syndrome, Dr Robert Jakob, ICD revision process, ICD-11, ICD-11 Beta Draft, ICD-11 consultation, Myalgic Encephalomyelitis (ME), Postviral fatigue syndrome, WHO (World Health Organization) Tagged with , , , , , , , , ,

Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform: Letter to key Revision personnel

June 10, 2015 by

Post #322 Shortlink: http://wp.me/pKrrB-45z

Update: June 12, 2015: This situation is now being looked into by a member of the recently assembled ICD-11 Project Management team.

As previously posted:

Although the development process for ICD-11 has been in progress for eight years, it’s still not known how ICD Revision proposes to classify the ICD-10 G93.3 legacy terms.

On June 8, I sent a letter, via email, to WHO/ICD Revision, requesting a prompt resolution to this situation:

For the attention of Bedirhan Üstün (WHO/ICD Revision Coordinator, Project Management Team)

CC:

Dr Margaret Chan (Director-General, WHO)
Robert Jakob (Medical Officer, WHO ICD classifications)
Christopher Chute (Chair, ICD-11 Revision Steering Group)
Tarun Dua (lead WHO Secretariat for Topic Advisory Group for Neurology)
Raad Shakir (Chair, Topic Advisory Group for Neurology)
Marjorie S. Greenberg (ex-officio NCHS, WHO-FIC, ICD-11 Revision Steering Group member, team member external assessors for ICD revision process)
Anneke Schmider (WHO Technical Officer, ICD Revision Project Manager)
J Ties Boerma (ICD Revision Project Management team)
Ségolène Aymé (founder Orphanet, chair of ICD-11 Topic Advisory Group for Rare Diseases)
Stefanie Weber (DIMDI German Institute of Medical Documentation and Information, WHO-FIC)


Re: Continued absence of the ICD-10 G93.3 legacy entities from the public version of the Beta drafting platform


Monday, June 8, 2015

Dear Dr Üstün,

At the end of May, a frozen release was posted for the ICD-11 Beta draft.

I remain extremely concerned that there are still no entries in the public Beta, within any linearization, for the three ICD-10 G93.3 legacy entities:

Postviral fatigue syndrome
Benign myalgic encephalomyelitis
Chronic fatigue syndrome

As you are aware, these three entities (plus a dozen or so synonym terms) were removed without explanation from the Diseases of the nervous system chapter of the public version of the Beta draft, in early 2013.

Consequently, for over 2 years, stakeholders throughout the world have been unable to view evolving proposals for the classification of these entities within ICD-11 or to scrutinise proposed chapter location, proposed hierarchies, proposed Definitions and other Content Model parameters.

It is very difficult to monitor, make comments or suggestions where terms are not represented within the draft.

A request submitted by me, in February, via the Proposal Mechanism, to restore these entities to the public Beta has produced no response.

While these three entities remain absent from the Beta draft, stakeholders are effectively disenfranchised from participating in the revision process.

Since the start of the revision process, in 2007, no progress reports, editorials or journal papers have been published on behalf of TAG Neurology discussing the work group’s deliberations for these specific entities.

Since early 2013, when the three entities were removed from the public Beta, there has been no information available, at all.

I am aware that in March 2014, enquiries had been made by English and Scottish Health Directorates and that WHO was jointly approached by several UK registered ME/CFS patient organizations and English parliamentarians. The WHO’s response, at that point, was that proposals for the classification of these terms was unresolved and that more time and more input from the work groups was required [1].

A year later, the need for clarification for current proposals remains unmet.

Given the level of concern amongst stakeholders, globally, would you please look into this matter?

Could you please expedite the restoring of these terms to the Beta draft, with a Change History, in order that the ICD-11 development process can be inclusive of the thousands of clinicians, researchers, allied health professionals, advocacy organizations and patients with a stakeholder interest in the classification of these terms.

If it is not possible to restore terms to the Beta while a freeze is in operation, could TAG Neurology be instructed to issue an immediate statement of intention for these terms, in the interim?

Many thanks in anticipation of a swift resolution.

Sincerely,

Suzy Chapman

1 Correspondence, Scottish Health Directorate and WHO, March 2014, obtained under FOI.

Background to this letter:

In ICD-10 Version 2015:

Postviral fatigue syndrome is coded in Chapter VI: Diseases of the nervous system (the Neurology chapter), at code G93.3, under parent class G93 Other disorders of brain (view here).

Benign myalgic encephalomyelitis is the inclusion term to Postviral fatigue syndrome and assigned the G93.3 code.

Chronic fatigue syndrome is not included in ICD-10 Volume 1: The Tabular List but is indexed to G93.3 in ICD-10: Volume 3: The Alphabetical Index.

(The orange symbol denotes an Index term)

ICD102015

Proposals for ICD-11

In May 2010, a change to the hierarchical relationship between the three terms had been proposed. Whereas Postviral fatigue syndrome had been the Title category term for ICD-10, Chronic fatigue syndrome was proposed as the Title category term for ICD-11.

As part of a substantive reorganization of the Neurology chapter, the parent class, G93 Other disorders of brain (under which the ICD-10 categories G93.0 thru G93.9 were located), is proposed to be retired for ICD-11.

This has meant that the terms that sat under the G93 parent class for ICD-10 would need to be relocated under alternative parent classes for ICD-11 or have new parent classes created for them.

In July 2012, the public version of the ICD-11 Beta drafting platform had stood as in my screenshot, below.

It’s not evident in my screenshot, but the asterisk at the end of Benign myalgic encephalomyelitis displayed a hover text denoting its specification as the Inclusion term to ICD Title term, Chronic fatigue syndrome.

Also not evident in this cropped screenshot is the listing of Postviral fatigue syndrome under Synonyms.

At this point, around 14 historical or alternative terms were listed under Synonyms. These additional uncoded for terms, which had included the ICD-10-CM R53.82 terms, chronic fatigue, unspecified and chronic fatigue syndrome nos, had been scraped from other classification and EMR systems as part of the Beta drafting process :

July2512

Source: ICD-11 Beta drafting platform, July 25, 2012.

In November 2012, ICD Revision inserted a scrappy Definition for Chronic fatigue syndrome (this replaced an earlier draft ICD-11 Beta Definition). I have sourced this draft Definition to an internal ICD Revision/Stanford Protege document (line 1983):

Chronic fatigue syndrome is characterized by extreme chronic fatigue of an indeterminate cause, which is disabling andt [sic] does not improve with rest and that is exacerbated by physical or mental activity.

The “Selected Cause” sub linearization was later removed from the public Beta draft and some of the terms that had been listed under it were restored to the Neurology chapter and to other chapters. But Title term, Chronic fatigue syndrome, its Inclusion term and its list of Synonyms were not restored to any chapter.

Since February 2013, no listing can be found in any chapter of the public version of the Beta draft, under any linearization, for any of the terms, Postviral fatigue syndrome, Benign myalgic encephalomyelitis or Chronic fatigue syndrome, either as uniquely coded for ICD Title terms, or as Inclusion terms or as Synonyms to Title terms, or listed in the ICD-11 Beta Index.

So currently, there is no information within the Beta draft for proposals for these three terms.

The public version of the Beta drafting platform displays no editing “Change History” or “Category Notes” for these terms and their continued absence from the draft is hampering professional and public stakeholder scrutiny, discourse and comment.

This is not acceptable for any disease category, given that ICD Revision is promoted by WHO’s, Bedirhan Üstün, as an open and transparent process that is inclusive of all classes of stakeholder. The recent external review of the revision process has called for greater transparency [1].

Since June 2013, my repeated requests for an explanation for the absence of these three terms from the Beta draft and for ICD Revision’s intentions for these terms were ignored by ICD Revision until July 2014, when a response was forthcoming from ICD Revision’s, Dr Geoffrey Reed.

It is understood that Annette Brooke MP also received a response, in July 2014, from WHO’s, Dr Robert Jakob, in respect of the joint organizations’ letter of March 18, for which Ms Brooke had been a co-signatory [2].

What clarifications have been given?

WHO and ICD Revision’s, Dr Geoffrey Reed (Senior Project Officer, Revision of Mental and behavioural disorders), have said that there has been no proposal and no intention to include ME or other conditions such as fibromyalgia or chronic fatigue syndrome in the classification of mental disorders.

Dr Reed has said that the easiest way to make this absolutely clear will be through the use of exclusion terms. However, he has said that he would be unable to request that exclusion terms are added to relevant Mental and behavioural disorders categories (e.g. Bodily distress disorder) until the conditions that are being excluded exist in the classification; that at such time, he would be happy to do so.

In August 2014, I submitted two FOI requests, one to the Scottish Health Directorate, one to the English Department of Health. The latter was not deemed specific enough in terms of named health agencies for a response to be generated, but I did receive information regarding the former.

Extract from FOI Response: September 24, 2014: FOI request fulfilled by (SCOTLAND) ACT 2002 (FOISA),

Information held covering the time period indicated relates to an email exchange on 11 and 12 March 2014 as part of a request for advice in answering Ministerial correspondence.

On 11 March the World Health Organisation WHO were asked “I would be very grateful for your help in confirming the status of an element within the WHO’s ICD 11 regarding ME/CFS. On 25th February in the UK parliament, the Under-Secretary of State for Health informed the UK parliament that the WHO had publicy stated that there was no proposal  to reclassify ME/CFS in ICD-11…I would be very grateful if you can confirm that this is the case and if possible, provide a web link to the original wording so I can include this within the correspondence I am preparing”.

The WHO responded on 12 March; “The question regarding MS/CFS [sic] and ICD-11 has been asked recently by several different parties. At this point in time, the ICD-11 is still under development, and to handle this classification issue we will need more time and input from the relevant working groups. It would be premature to make any statement on the subject below.

The general information on ICD Revision can be accessed here: http://www.who.int/classifications/icd/revision/. The current state of development of ICD-11 (draft) can be viewed here (and comments can be made, after self registration): http://www.who.int/classifications/icd11 ”.

A further email on 12 March to the WHO asked; “It would be fair to say then …that work will continue on the draft with an expected publication in 2015?”.

WHO responded on 12 March; “Work on the draft will continue until presentation at the World Health Assembly in 2017**. Before, reviews and field testing will provide input to a version that is available for commenting, as much as possible and proposals can be submitted online* with the mechanisms provided already.”

*Since the three terms are currently not accounted for within the Beta draft this impedes the submission of comments.

**Rescheduled in May, this year; the proposed target for presentation for WHA approval is currently May 2018.

This is all that has been disclosed by WHO/ICD Revision in respect of current proposals for the classification of the three ICD-10 G93.3 terms, despite the fact that ICD-11 has now been under development for 8 years, and prior to the timeline extension in January 2014, the new edition had been scheduled for WHA approval and dissemination in 2015.

There remain 6 important questions to be answered by WHO/ICD Revision:

• under which chapter(s) are PVFS, BME and CFS proposed to be located?
• under which parent classes?
• what hierarchies are proposed, in terms of coded for Title terms, Inclusions, Synonyms?
• which of the terms are to be assigned definitions?
• where will definitions be sourced from?
• when will the terms be restored to the draft to enable scrutiny and comment?

Important caveats: The public Beta platform is not a static document, it is a work in progress, subject to daily editing and revision, to field test evaluation and to approval by the RSG and WHO classification experts. Not all new proposals may survive the ICD-11 field tests. Chapter numbering, codes and “sorting codes” currently assigned to ICD categories are not stable and will change as chapters and parent/child hierarchies are reorganized. The public version of the Beta is incomplete; not all “Content Model” parameters display or are populated; the draft may contain errors and omissions.

References and related posts

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

2 Joint Open letter to WHO/ICD Revision over classification of absent G93.3 terms for ICD-11 Beta draft

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

4 Briefing paper on ICD-11 and PVFS, ME and CFS: Part 1

5 Briefing paper on ICD-11 and PVFS, ME and CFS: Part 2

6 Summary of responses from WHO re: Bodily distress disorder, Bodily stress syndrome, Bodily Distress Syndrome

Filed under Action for M.E., Bedirhan Üstün, Bodily distress disorder, Chronic fatigue syndrome, Fibromyalgia, ICD-11 Beta Draft, ICD-11 consultation, Myalgic Encephalomyelitis (ME), Postviral fatigue syndrome, WHO (World Health Organization) Tagged with , , , , , , , , ,

Briefing paper on ICD-11 and PVFS, ME and CFS: Part 2

September 30, 2014 by

Post #316 Shortlink: http://wp.me/pKrrB-41q

Update: With regard to a new parent class: Functional clinical forms of the nervous system proposed for inclusion within the ICD-11 Diseases of the nervous system (Neurology) chapter, see Stone et al paper:

Functional disorders in the Neurology section of ICD-11: A landmark opportunity

Jon Stone, FRCP, Mark Hallett, MD, Alan Carson, FRCPsych, Donna Bergen, MD and Raad Shakir, FRCP

Neurology December 9, 2014 vol. 83 no. 24 2299-2301

doi: 10.1212/WNL.0000000000001063

Full free text:

http://www.neurology.org/content/83/24/2299.long

Full free PDF:

http://www.neurology.org/content/83/24/2299.full.pdf+html

 

As previously posted:

Part two of a three part report on the status of ICD-11 proposals for the classification of the three ICD-10 entities:

G93.3 Postviral fatigue syndrome (coded under parent class G93 in Tabular List)

Benign myalgic encephalomyelitis (inclusion term to G93.3 in Tabular List)

Chronic fatigue syndrome (indexed to G93.3 in Volume 3: Alphabetical Index)

 

Part 1: Status of the ICD-11 development process published September 29, 2014

 

Part 2: Status of proposals for the classification of PVFS, BME, and CFS in the public version of the ICD-11 Beta drafting platform

Seven years into the development process and it’s still not known how ICD-11 intends to classify the three G93.3 terms.

Sub working groups were formed under TAG Neurology with responsibility for the restructured disease and disorder blocks proposed for ICD-11’s Diseases of the nervous system chapter.

It hasn’t been established which of the various sub working groups has responsibility for making recommendations for the revision of the G93.3 terms or who the members of the subgroup(s) and its external advisers are.

Neurology Topic Advisory Group (TAG) sub working groups:

Neurology TAG sub working groups

Source: Slide #16: Summary of progress, Neurology Advisory Group, Raad Shakir (Chair): http://www.hc2013.bcs.org/presentations/s1d_thu_1530_Shakir_amended.ppt

 

No journal papers, editorials, presentations or public domain progress reports have been published, to date, on behalf of TAG Neurology that discuss emerging proposals or intentions for the classification of the three G93.3 terms for ICD-11.

The public version of the Beta drafting platform displays no editing change histories or category notes. Until the three terms have been restored to the Beta draft the public is reliant on what information WHO/ICD Revision chooses to disclose, which thus far, has been minimal.

Currently, there is no information within the Beta draft for proposals for these three terms. The continued absence of these terms from the draft (now missing for over 18 months) is hampering professional and public stakeholder scrutiny, discourse and comment.

This is not acceptable for any disease category given that ICD Revision is being promoted by WHO’s, Bedirhan Üstün, as an open and transparent process and inclusive of stakeholders.

This next section summarizes the most significant changes since May 2010 for several iterations of the Neurology chapter, during the Alpha and Beta drafting phases, as displayed in the public version of the draft.

 

Tracking the progression of the G93.3 terms through the Alpha and Beta drafting stages

In May 2010: the ICD-10 G93 legacy parent class: Other disorders of brain was retired and a change in hierarchy for class Postviral fatigue syndrome recorded. See Notes Tree screenshot [12].

A Definition was inserted for Chronic fatigue syndrome. See Change history screenshot [13].

Chronic fatigue syndrome replaced Postviral fatigue syndrome as the new ICD Title term and now sat directly under parent class: Other disorders of the nervous system.

Benign myalgic encephalomyelitis was specified as an Inclusion term under Synonyms to new ICD Title term: Chronic fatigue syndrome. See Alpha draft screenshot [14].

Postviral fatigue syndrome was at that point unaccounted for in the Alpha draft.

By July 2012: 13 additional terms were now listed under Synonyms, including Postviral fatigue syndrome, and two terms imported from the yet to be implemented, ICD-10-CM (the ICD-10-CM Chapter 18 R53.82 codes: chronic fatigue syndrome nos and chronic fatigue, unspecified).

The Definition field was now blanked.

At this point, ICD Title term: Chronic fatigue syndrome was no longer displaying as a child category directly under parent class: Other disorders of the nervous system.

The listing for Chronic fatigue syndrome now appeared under a new “Selected Cause” subset, which displayed as a sub linearization within the Foundation Component. The purpose of this subset, which aggregated many terms from Neurology and other chapters, was not evident from the Beta draft.

By November 2012: ICD Revision had re-inserted a scrappy, revised Definition for Chronic fatigue syndrome. I have sourced this draft definition to an internal ICD Revision/Stanford Protege document (line 1983):

Chronic fatigue syndrome is characterized by extreme chronic fatigue of an indeterminate cause, which is disabling andt [sic] does not improve with rest and that is exacerbated by physical or mental activity.

 

Below is a screenshot from the Beta draft taken in July 2012, before a Definition for Title term, Chronic fatigue syndrome had been re-inserted.

(It isn’t evident in the screenshot, but the asterisk at the end of Benign myalgic encephalomyelitis displayed a hover text denoting its specification as the Inclusion term to ICD Title term, Chronic fatigue syndrome. Also not evident in this cropped screenshot is the listing of Postviral fatigue syndrome under Synonyms.)

July2512

Source: ICD-11 Beta drafting platform, July 25, 2012.

This “Selected Cause” sub linearization was later removed from the public Beta draft and some of the terms that had been listed under it were restored to the Neurology chapter and to other chapters. But ICD Title term, Chronic fatigue syndrome, its Inclusion term and list of Synonyms were not restored to any chapter.

Since February 2013: no listing can be found in any chapter of the public version of the Beta draft, under any linearization, for any of the terms, Postviral fatigue syndrome, Benign myalgic encephalomyelitis or Chronic fatigue syndrome, as uniquely coded ICD Title terms, or as Inclusion terms or Synonyms to Title terms, or in the ICD-11 Beta Index.

Since June 2013: My repeated requests for an explanation for the absence of these three terms from the Beta draft and for ICD Revision’s intentions for these terms were ignored by ICD Revision until July 2014, when a response was forthcoming from ICD Revision’s, Dr Geoffrey Reed.

(It is understood that Annette Brooke MP also received a response, in July, from WHO’s, Dr Robert Jakob, in respect of the joint organizations’ letter of March 18, for which Ms Brooke had been a co-signatory.)

 

What clarifications have been given?

Feb 12, 2014: An unidentified admin for the @WHO Twitter account replied to a member of the public: “Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11.” A similar affirmation was tweeted by Gregory Hartl, head of public relations/social media, WHO.

 

July 24, 2014: Geoffrey Reed PhD (Senior Project Manager for revision of Mental and behavioural disorders) replied to Suzy Chapman, by email:

Dr Reed stated inter alia that the placement of ME and related conditions within the broader classification is still unresolved.

That he had no influence or control over this process; his authority being limited to coordinating recommendations related to conditions that should or should not be placed in the chapter on Mental and behavioural disorders.

That there has been no proposal and no intention to include ME or other conditions such as fibromyalgia* or chronic fatigue syndrome in the classification of mental disorders.

That the easiest way to make this absolutely clear will be through the use of exclusion terms. However, he would be unable to ask that exclusion terms are added to relevant Mental and behavioural disorders categories (e.g. Bodily Distress Disorder) until the conditions that are being excluded exist in the classification. That at such time, he would be happy to do that.

That since his purview does not extend to the section on classification of Diseases of the nervous system or other areas outside the Mental and behavioural disorders chapter, he was unable to provide any information related to how these conditions will be classified in other chapters.

That he was unable to comment about the management of correspondence by other TAG groups and signposted me to Dr Robert Jakob [the senior classification expert who had been copied into the joint organizations’ letter to WHO/ICD Revision, in March] whose role relates to the overall coordination of the classification.

 

*Fibromyalgia remains classified under ICD-11 Beta draft public version chapter “Diseases of the musculoskeletal system and connective tissue” under parent: Certain specified soft tissue disorders, not elsewhere classified.

Irritable bowel syndrome remains classified under ICD-11 Beta draft public version chapter “Diseases of the digestive system” under: Functional gastrointestinal disorders > Irritable bowel syndrome and certain specified functional bowel disorders.

 

In August, I submitted two FOI requests, one to the Scottish Health Directorate, one to the English Department of Health. The latter was not deemed specific enough in terms of named health agencies for a response to be generated and will require resubmission.

September 24, 2014: FOI request fulfilled by (SCOTLAND) ACT 2002 (FOISA), received from David Cline, Unit Head, Strategic Planning and Clinical Priorities Team, by email: 

The Quality Unit: Health and Social Care Directorates
Planning & Quality Division

[Addresses redacted]

Your ref:  FoI/14/01460

24 September 2014

REQUEST UNDER THE FREEDOM OF INFORMATION (SCOTLAND) ACT 2002 (FOISA)

Thank you for your request dated 27 August 2014 under the Freedom of Information (Scotland) Act 2002 (FOISA)…

 

Your request

Under the Freedom of Information (Scotland) Act 2002, please provide the following.

Please send me copies of all correspondence, emails, letters, minutes relating to:

Enquiries made by Scottish Health Directorate to World Health Organization (WHO), 20 Av Appia, CH-1211, Geneva, in respect of:

Classification of the three ICD-10 (International Classification of Diseases 10th edition) G93.3 coded disease terms in the forthcoming revision of ICD-10, to be known as ICD-11:

Postviral fatigue syndrome (Post viral fatigue syndrome; PVFS)

Benign myalgic encephalomyelitis (myalgic encephalomyelitis; myalgic encephalitis; ME);

Chronic fatigue syndrome (CFS; CFS/ME, ME/CFS)

During the period:

1] January 1, 2013 – December 31, 2013

2] January 1, 2014 – July 31, 2014

I also request copies of responses received from WHO in reply to enquiries made by Scottish Health Directorate during these periods in respect of the above ICD disease categories.

 

Response to your  request

Information held covering the time period indicated relates to an email exchange on 11 and 12 March 2014 as part of a request for advice in answering Ministerial correspondence.

On 11 March the World Health Organisation WHO were asked “I would be very grateful for your help in confirming the status of an element within the WHO’s ICD 11 regarding ME/CFS. On 25th February in the UK parliament, the Under-Secretary of State for Health informed the UK parliament that the WHO had publicy stated that there was no proposal  to reclassify ME/CFS in ICD-11…I would be very grateful if you can confirm that this is the case and if possible, provide a web link to the original wording so I can include this within the correspondence I am preparing”.

The WHO responded on 12 March; “The question regarding MS/CFS [sic] and ICD-11 has been asked recently by several different parties. At this point in time, the ICD-11 is still under development, and to handle this classification issue we will need more time and input from the relevant working groups. It would be premature to make any statement on the subject below.

The general information on ICD Revision can be accessed here: http://www.who.int/classifications/icd/revision/. The current state of development of ICD-11 (draft) can be viewed here (and comments can be made, after self registration): http://www.who.int/classifications/icd11 ”.

A further email on 12 March to the WHO asked; “It would be fair to say then …that work will continue on the draft with an expected publication in 2015?”.

WHO responded on 12 March; “Work on the draft will continue until presentation at the World Health Assembly in 2017. Before, reviews and field testing will provide input to a version that is available for commenting, as much as possible and proposals can be submitted online* with the mechanisms provided already.”

*Since the three terms are currently not accounted for within the Beta draft this impedes the submission of comments.

 

This is the sum total of what has been disclosed by WHO/ICD Revision in respect of current proposals for the classification of the three ICD-10 G93.3 terms, despite the fact that ICD-11 has now been under development for 7 years, and prior to the timeline extension in January 2014, the new edition had been scheduled for WHA approval and dissemination in 2015.

 

What might the working group potentially be considering? 

  • The terms may have been removed from the draft in order to mitigate controversy over a proposed change of chapter location, change of parent class, reorganization of the hierarchy, or over the wording of Definition(s). (Whether a term is listed as a coded Title term, or is specified as an Inclusion term to a coded term or listed under Synonyms to a coded term, dictates which of the terms is assigned a Definition. If, for example, CFS and [B]ME were both coded as discrete ICD Title terms, both terms will require the assigning of Definitions and other Content Model descriptors.)
  • TAG Neurology may be proposing to retain all three terms under the Neurology chapter, under an existing parent class that is still under reorganization, and has taken the three terms out of the linearizations in the meantime, or is proposing to locate one or more of the terms under a new parent class for which a name and location has yet to be agreed.
  • TAG Neurology may be proposing to locate one or more of these terms under more than one chapter, for example, under the Neurology chapter but dual parented under the Symptoms and signs chapter. Or multi parented and viewable under a multisystem linearization, if the potential for a multisystem linearization remains under discussion.
  • TAG Neurology may be proposing to retire one or more of these three terms (despite earlier assurances by senior WHO classification experts) but I think this unlikely. ICD-11 will be integrable with SNOMED CT, which includes all three terms, albeit with ME and BME listed as synonyms to coded CFS, with PVFS assigned a discrete SNOMED CT code.
  • Given the extension to the timeline, TAG Neurology may be reluctant to make decisions at this point because it has been made aware of the HHS contract with U.S. Institute of Medicine (IOM) to develop “evidence-based clinical diagnostic criteria for ME/CFS” and to “recommend whether new terminology for ME/CFS should be adopted.” Any new resulting criteria or terminology might potentially be used to inform ICD-11 decisions.

Other possibilities might be listing one or more of these terms under parent class, Certain specified disorders of the nervous system or under Symptoms, signs and clinical findings involving the nervous system, which is dual parented under both the Neurology chapter and the Symptoms and signs chapter.

All currently listed parent and child categories within the Neurology chapter can be viewed here:

Click on the small grey arrows next to Beta draft categories to display their parent, child and grandchildren categories, as drop down hierarchies.

Linearization display button1Select this coloured button to display symbols and hover text indicating which linearization(s) a selected term is listed under.

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1296093776

 

There is a new parent class proposed for the ICD-11 Neurology chapter called, Functional clinical forms of the nervous system, which Dr Jon Stone has been working on [15] [17].

Under this new Neurology chapter parent class, it is proposed to relocate or dual locate a list of “functional disorders” (Functional paralysis or weakness; Functional sensory disorder; Functional movement disorder; Functional gait disorder; Functional cognitive disorder etc.) which in ICD-10 are classified under the Chapter V Dissociative [conversion] disorders section.

The rationale for this proposed chapter shift for Conversion disorders/functional disorders is beyond the scope of this briefing paper.

In a 2013 editorial, Prof Raad Shakir (Chair, TAG Neurology) briefly discusses the proposed reorganization of what he calls the “rag bag of diverse and disparate diseases” that is parent class, Other disorders of the nervous system [16].

He writes, “In addition, there will also be a section on Functional disorders of the nervous system, reflecting the growing diagnostic importance of such syndromes.” 

It’s not clear whether this reference, in 2013, to the inclusion of a new section for “Functional disorders of the nervous system” within the Neurology chapter relates to the relocation or dual location of those “functional disorders” currently classified under Dissociative [conversion] disorders within ICD-10 Chapter V, or whether Prof Shakir was referring to potential inclusion within the Neurology chapter of a section for “Functional somatic syndromes.” But I consider the former more likely.

There is currently no inclusion within any chapter for a specific parent class for “Functional somatic syndromes,” or “Functional somatic disorders” or “interface disorders” under which, conceivably, those who consider CFS, ME, IBS and FM to be “speciality driven” manifestations of a similar underlying functional disorder might be keen to see these terms aggregated.

I shall return to the subject of “interface disorders” in Part 3.

 

There remain 6 important questions to be answered:

• under which chapter(s) are PVFS, BME and CFS proposed to be located?
• under which parent classes?
• what hierarchies are proposed, in terms of coded Title terms, Inclusions, Synonyms?
• which of the terms are to be assigned definitions?
• where will definitions be sourced from?
• when will the terms be restored to the draft to enable scrutiny and comment?

 

Extract, ICD-11 document Known Concerns and Criticisms:

“It may be true that some advocacy groups may give inputs in line with their vested interests or object to the listings in ICD-11 Beta. When such public controversy occurs, it is better to have it in an open and transparent discussion…”

Having obscured these terms from the Beta drafting platform eighteen months ago, with no explanation, ICD Revision Steering Group and TAG Neurology, which are both accountable to WHO, have disenfranchised professional and advocacy stakeholders from scrutiny of, and participation in what is being touted as an open and transparent process.

For Part 1 of this briefing document: Part 1: Status of the ICD-11 development process

In Part 3, I shall be setting out what is currently known about the status of proposals for the revision of ICD-10’s Somatoform disorders for the core and primary care versions of ICD-11.

 

Important caveats: The public Beta platform is not a static document, it is a work in progress, subject to daily editing and revision, to field test evaluation and to approval by the RSG and WHO classification experts. Not all new proposals may survive the ICD-11 field tests. Chapter numbering, codes and “sorting codes” currently assigned to ICD categories are not stable and will change as chapters and parent/child hierarchies are reorganized. The public version of the Beta is incomplete; not all “Content Model” parameters display or are populated; the draft may contain errors and omissions.

 

References for Part 2

12 https://dxrevisionwatch.files.wordpress.com/2010/05/2icatnotegj92cfs.png

13 https://dxrevisionwatch.files.wordpress.com/2011/02/change-history-gj92-cfs.png

14 https://dxrevisionwatch.files.wordpress.com/2011/05/icd11-alpha1-17-05-11.png

15 http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f1614846095

16 Shakir R, Rajakulendran, S. The 11th Revision of the International Classification of Diseases (ICD) The Neurological Perspective JAMA Neurol. 2013;70(11):1353-1354. http://archneur.jamanetwork.com/article.aspx?articleid=1733323

17 Functional neurological disorders: The neurological assessment as treatment. Stone J. Neurophysiol Clin. 2014 Oct;44(4):363-73 http://www.ncbi.nlm.nih.gov/pubmed/25306077

Filed under Bodily distress disorder, Bodily stress syndrome, Chronic fatigue syndrome, Fibromyalgia, iCAT, ICD-11 Beta Draft, ICD-11 consultation, ICD11-PHC, Myalgic Encephalomyelitis (ME), Postviral fatigue syndrome, WHO (World Health Organization) Tagged with , , , , , , , , ,

Briefing paper on ICD-11 and PVFS, ME and CFS: Part 1

September 29, 2014 by

Post #315 Shortlink: http://wp.me/pKrrB-40E

 

Part one of a three part report on the status of ICD-11 proposals for the classification of the three ICD-10 entities:

G93.3 Postviral fatigue syndrome (coded under parent class G93 in Tabular List)

Benign myalgic encephalomyelitis (inclusion term to G93.3 in Tabular List)

Chronic fatigue syndrome (indexed to G93.3 in Volume 3: Alphabetical Index)

 

Part 1: Status of the ICD-11 development process

Part 2: Status of proposals for the classification of PVFS, BME, and CFS in the public version of the ICD-11 Beta drafting platform

Part 3: Status of proposals for the revision of ICD-10’s Somatoform disorders for the core and primary care versions of ICD-11

 

Part 1: Status of the ICD-11 development process

The revision of ICD-10 and development of the structure for ICD-11 began in April 2007.

ICD-11 was originally planned for completion by 2012, but the timeline was extended to 2015 early in the development process.

In January 2014, WHO/ICD Revision extended the timeline by a further two years to allow more time for generation of content, peer review, field testing and evaluation, translations and transition preparations [1].

The current projected date for approval by the World Health Assembly (WHA) is May 2017 with implementation timelined for 2018+.

In July 2014, WHO issued a call for expressions of interest in a contract for an external interim assessment of the revision process. Due date for the assessment report is December 15, 2014. It is not known whether WHO intends to publish a summary of the external assessment report.

Once ICD-11 is ready for dissemination, WHO Member States will transition to the new edition at their own pace. There is no WHO mandated date by which ICD-11 must be implemented, but WHO has said that it won’t support the annual updating of ICD-10 indefinitely. Developing and low resource countries may take many years before migrating to ICD-11.

 

Print and electronic versions

The scope of the revision project is ambitious and technically very complex. The project is under-resourced and underfunded and there is no overall project manager. Work groups have complained about the burden of work and poor internal communications.

There will be an ICD-11 print edition and a more expansive computerized version planned to be integrable with the international SNOMED CT terminology system.

The electronic version has a Foundation Component which includes all the ICD-11 diagnostic categories arranged in hierarchical “trees.”

From the Foundation Component, subsets (known as “linearizations”) are derived that contain mutually exclusive lists of terms for different purposes, e.g. for mortality, morbidity or primary care.

There are anticipated to be linearizations for mental and behavioural disorders, low resource and high resource primary care settings, rare diseases and occupational health and speciality classifications, including neurology, paediatrics, ophthalmology and dermatology.

The public version of the Beta drafting platform currently displays only the Foundation Component and a Joint Linearization for Mortality and Morbidity Statistics.

The country specific “Clinical Modifications” of ICD-10, including the U.S.’s forthcoming ICD-10-CM, are expected to be incorporated into ICD-11, as linearizations, as is ICPC-2.

The development process is overseen by a Revision Steering Group (RSG) chaired by biomedical informatics expert, Christopher Chute, MD, Mayo Clinic, Rochester, MN [2].

 

Primary Care version

ICD-10 PHC (sometimes written as ICD-10-PHC or ICD10-PHC or ICD-10 PC), is a simplified version of the WHO’s ICD-10 chapter for mental and behavioural disorders for use in general practice and primary health care settings. This system has rough but not exact equivalence to mental disorders in the core ICD-10 classification.

The ICD-10 PHC describes 25 disorders commonly managed within primary care as opposed to circa 450 classified within Chapter V of ICD-10.

An revised version, known as ICD-11 PHC, is being developed simultaneously with the core version.

The ICD-11 Primary Care Consultation Group, chaired by Prof Sir David Goldberg, is charged with the revision of the 26 mental and behavioural disorders in ICD-10 PHC. The 28 mental disorders proposed for the new primary care edition (ICD-11 PHC) will require an equivalent category within the core ICD-11 version [5].

 

Work Groups

Over 20 work groups have been assembled since 2007 reporting to the RSG. These are known as Topic Advisory Groups (TAGs). Professional and scientific organisations also have representatives on the TAGs [3].

TAG Managing Editors may also recruit external reviewers for reviewing proposals and textual content. Terms of Reference for TAGs and work groups can be viewed in reference [4].

Reporting to the TAGs are sub working groups charged with making recommendations for specific chapter sections. TAG membership lists are available from the WHO site but the names of sub working group members and external reviewers are not posted.

The Work Groups with most relevance for the ICD-10 G93.3 categories are:

TAG Neurology (Diseases of the nervous system) Chair: Prof Raad Shakir, Managing editor: Tarun Dua, WHO.

TAG Mental Health (Mental and behavioural disorders) Co-Chairs: Geoffrey Reed, PhD, WHO; Steven Hyman, MD, Harvard University.

ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG) Chair: Prof Oye Gureje. A sub working group to TAG Mental Health. Prof emeritus, Francis Creed, is a member. This group is said to have 17 members but apart from two others, I have been unable to establish the full membership list.

ICD-11 Primary Care Consultation Group (PCCG) Chair: Prof Sir David Goldberg, Vice-chair: Prof Michael Klinkman (U.S.). Per Fink’s research collaborator, Marianne Rosendal, is a member of the 12 person, PCCG. The full member list has been published in a journal paper [5] but is not posted on the WHO website.

 

Differences between ICD-10 and ICD-11

There are significant differences between the structure of ICD-10 and ICD-11: more chapters (currently 26 against ICD-10’s 22); reordering of chapters; restructuring of disease classes and parent/child hierarchies within chapters; renaming of some terms; relocation of some terms to other existing chapters or to new chapters; multiple linearizations; more descriptive content; a new system of code numbers.

Disease terms with an equivalent ICD-10 term are back referenced to their legacy terms and codes in the electronic platform for ICD-10 Version: 2010 [6].

 

Multiple parents and multisystem diseases

For ICD-10 Tabular List, an ICD entity (a parent class, title term or inclusion term) can appear in only one place within the classification.

For ICD-11, multiple parentage is permissible. In the Foundation Component, disorder or disease terms can appear under more than one hierarchical parent [7].

Diseases that straddle two chapters, like malignant neoplasms of the skin, can now be viewed under Diseases of the skin as well as cross-linking to the Neoplasms chapter. Premenstrual Dysphoric Disorder (PMDD), proposed for inclusion in ICD-11, is listed under both Depressive disorders, in the Mental and behavioural disorders chapter, and also under Premenstrual tension syndrome under new chapter, Conditions related to sexual health.

So the ICD-10 concept of discrete chapter location is being dispensed with for ICD-11.

In 2010, the Revision Steering Group posted a discussion paper on the potential for incorporating a new chapter into ICD-11 for Multisystem diseases, but this proposal has been rejected [8].

In 2013, consideration was being given, instead, for generating a multisystem diseases linearization – as a virtual chapter – compiled from the Foundation Component that lists all ICD disorders and diseases, but there would be no separate Multisystem diseases chapter within the print version [9].

It isn’t known whether a decision has been reached but there is currently no ability to generate a multisystem diseases linearization from the Foundation Component, at least not within the public version of the Beta drafting platform.

How to represent multisystem diseases within ICD-11 (and the potential for an ICD category term to be assigned to multiple parents) could have implications for classification of one or more of the three ICD-10 G93.3 terms.

 

The Content Model

Another major difference between ICD-10 and ICD-11 is the Content Model. For ICD-11, all uniquely coded ICD Title terms (but not their Inclusion terms or Synonyms) are intended to have Definitions and in some cases, other descriptive content populated [10]. Whereas category terms located in ICD-10 chapters other than Chapter V: Mental and behavioural disorders were listed, to quote WHO’s, Bedirhan Üstün, like a laundry list, with no descriptive content.

 

Outside of the WHO classification experts, the RSG, the working groups, sub working groups and their external advisers who else is inputting into the development process?

In 2009, ICD Revision Steering Group began inviting professional bodies and Royal Colleges to submit proposals for revisions to the ICD structure and content for ICD-11.

WHO has also set up a Global Clinical Practice Network (GCPN), an international network of over 11,000 mental health and primary care professionals [11].

Calls have gone out for various classes of professional stakeholder to register with the public version of the Beta draft to participate in the revision process:

Medicine; Nursing; Midwifery; Dentistry; Pharmacy; Health information management (coding, medical records); Environmental and occupational health and hygiene; Physiotherapy or Physical therapy; Nutrition; Social Sciences; Psychology; Social work and counseling; Epidemiology; Health Policy; Traditional and complementary medicine.

A pre-final draft for ICD-11 is expected to be released for public comment at some point in 2015/16, but no firm date for this has been announced.

 

How can stakeholders participate?

Professional stakeholders and others who register an interest are able to interact with the Beta drafting platform and access additional content, e.g. PDFs of the print versions and Index.

The public version of the Beta drafting platform can be viewed without registration but comments submitted by registered stakeholders are not visible to non registered viewers.

Comments and suggestions are screened and forwarded to the appropriate TAG Managing editors for review. Occasionally, a TAG Managing editor or one of the ICD Revision staff will respond to a proposal or a request for correction via the comments facility.

Registered stakeholders are permitted to:

• Add comments on and read other stakeholder comments on concepts; title terms; synonyms; inclusion terms; exclusions and other Content Model parameter terms;
• Comment on whether a category is in the right place;
• Comment on whether the category is useful for Primary Care; Research; Clinical;
• Suggest definitions (with sources) for a disease or disorder and comment on already populated draft definitions;
• Make proposals to change ICD categories, supported with references;
• Offer to participate in field trials (for professionals only);
• Offer to assist in translating ICD into other languages

Stakeholders can register for participation here: http://www.who.int/classifications/icd/revision/en/

Video inviting professional and stakeholder participation here: http://www.who.int/classifications/icd/revision/video/en/

The Beta platform is intended for considered and collegiate input – not as a platform for campaigning or activism.

Some patient advocacy organisations, for example, gender and trans* groups, have been holding face to face meetings with ICD Revision personnel at conferences or other venues to inform the revision process and represent their constituencies’ interests.

A new Proposals mechanism was launched on the public Beta draft in July 2014. This is a more sophisticated system through which registered users can submit proposals, supported with rationales and references, for changes/additions/deletions to proposed ICD-11 entities.

Proposals guide: http://apps.who.int/classifications/icd11/browse/Help/Get/proposal_main/en

 

Where to view the Beta drafting platform

ICD Revision and TAG Managing editors are developing the Beta draft on a separate electronic multi-authoring platform, known as the iCAT, on a server which is not accessible to the public.

The iCAT Beta platform is more layered than the Beta version which the public sees: it displays a larger number of “Content Model” parameters; there are tabs for tracking “Change Histories” and “Category Notes and Discussions” for comparing earlier iterations of a specific chapter section with the most recent edits. There are sub lists for terms that are proposed to be retired or for which decisions are needing to be made.

The public version of the Beta has no means through which changes to the draft (and rationales for changes) can be tracked, or for comparing, for example, an earlier edit of a specific chapter section with the most recent content.

The inability to monitor editing histories in the public Beta draft and the absence of progress reports from the work groups adds to confusion around interpretation of the Beta content. The draft is updated daily, so it needs checking every day for relevant changes.

You can view the public version of the Beta drafting platform here:
http://apps.who.int/classifications/icd11/browse/f/en

Foundation Component (the entire ICD universe):
http://apps.who.int/classifications/icd11/browse/f/en#/

Joint Linearization for Mortality and Morbidity Statistics:
http://apps.who.int/classifications/icd11/browse/l-m/en#/

User Guide: http://apps.who.int/classifications/icd11/browse/Help/en

 

Click on the small grey arrows next to the Beta draft categories to display their parent, child and grandchildren categories, as drop down hierarchies.

Linearization display button1Select this coloured button to display symbols and hover text indicating which linearization(s) a selected term is listed under.

The display panel on the right contains the “Content Model” text: Short and Long Definitions, Inclusion terms, Synonyms, Exclusions, Index terms etc. for the selected ICD Title term. Many terms are still awaiting population of Short Definitions (for print version) and Long Definitions (for electronic version), and other descriptive content.

For comparison between the public Beta draft and the iCAT, view this 2 minute iCAT screencast animation (with audio), intended as a demo for ICD Revision editors.

The animation is an .ogv file which should run in recent releases of Firefox but may not load in other browsers. If you don’t have the right program installed to run an .ogv file, the iCAT multi-authoring platform that the TAG editors are using looks like this:

iCAT editing platform 3

 

In Part Two, I shall be setting out what is currently known about proposals for the classification of Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome for ICD-11.

Important caveats: The public Beta platform is not a static document, it is a work in progress, subject to daily editing and revision, to field test evaluation and to approval by the RSG and WHO classification experts. Not all new proposals may survive the ICD-11 field tests. Chapter numbering, codes and “sorting codes” currently assigned to ICD categories are not stable and will change as chapters and parent/child hierarchies are reorganized. The public version of the Beta is incomplete; not all “Content Model” parameters display or are populated; the draft may contain errors and omissions.

 

Part 2: Status of proposals for the classification of PVFS, BME, and CFS in the public version of the ICD-11 Beta drafting platform published September 30, 2014

Part 3: Status of proposals for the revision of ICD-10’s Somatoform disorders for the core and primary care versions of ICD-11 [to follow]

 

References for Part 1

1 Committee for the Coordination of Statistical Activities, Twenty-second Session 4-6 September 2013, Items for discussion and decision: Item 8, provisional agenda, pp 8-10: http://unstats.un.org/unsd/accsub/2013docs-22nd/SA-2013-12-Add1-Health-WHO.pdf

2 http://www.who.int/classifications/icd/RSG/en/

3 http://www.who.int/classifications/icd/TAGs/en/

4 http://www.who.int/entity/classifications/TOR_TAGs_WGs.pdf?ua=1

5 Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS: Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Family Practice (2012) 30 (1): 76-87. Free text: http://fampra.oxfordjournals.org/content/30/1/76.full.pdf+html

6 http://apps.who.int/classifications/icd11/browse/f/en#/

7 http://apps.who.int/classifications/icd11/browse/Help/Get/architecture/en

8 https://dxrevisionwatch.files.wordpress.com/2010/10/considerations20on20multisystem_diseases_201008181.doc

9 http://informatics.mayo.edu/WHO/ICD11/collaboratory/attachments/208/19.Multisystem_Diseases_Chapter.v1.2.docx

10 http://www.who.int/classifications/icd/revision/contentmodel/en/

11 http://www.globalclinicalpractice.net/en/

Filed under Bodily distress disorder, Bodily stress syndrome, Christopher Chute, Chronic fatigue syndrome, iCAT, ICD-11 Beta Draft, ICD11-PHC, Myalgic Encephalomyelitis (ME), Postviral fatigue syndrome, WHO (World Health Organization) Tagged with , , , , , , , , ,

DSM-5 rejects call for urgent reconsideration of new “Somatic Symptom Disorder” category

January 17, 2013 by

DSM-5 rejects call from lead psychiatrist for DSM-IV Task Force for urgent reconsideration of new “Somatic Symptom Disorder” category 

Post #219 Shortlink: http://wp.me/pKrrB-2C0

Today, Allen Frances, M.D., publishes a follow-up to our December 8 commentary in which we set out the implications for all chronic illness patient populations of misdiagnosis with “Somatic Symptom Disorder (SSD)” or misapplication of an additional diagnosis of “SSD.”

In the second of three commentaries, Dr Frances reports on the outcome of his representations to the DSM-5 Somatic Symptom Disorder Work Group, key APA Board of Trustees office holders and DSM-5’s Task Force chair and vice-chair, for urgent reconsideration of this new “catch-all” mental health disorder.

The texts for DSM-5 are expected to be finalized for the publishers by the end of this month.

Dr Frances’ first commentary on SSD is approaching 20,000 views and has received over 300 comments on Psychology Today, alone. It is also published at Huffington Post and at Education Update and widely circulated on other platforms.

There has been an overwhelming response to our concerns with comments pouring in from patients with diverse chronic illnesses and medical conditions including Ehlers-Danlos Syndrome, Interstitial Cystitis, Behcet’s disease, Endometriosis, Lupus, Hashimotos thyroid disorder, Hughes Syndrome, Pancreatitis and Chronic Lyme disease –patients whose symptoms had been dismissed for years before finally receiving a diagnosis or who are still struggling to obtain a diagnosis, many of whom had been mislabelled with a somatoform disorder.

We’ve also received many emails from patients and international patient organizations.

Please circulate this follow-up commentary. I am particularly keen to reach platforms for patients with common chronic diseases and conditions – cancer, heart disease, diabetes, COPD, MS, RA, chronic pain; also Lyme disease, chemical injury and rare diseases, IBS and Fibromyalgia, ME and CFS.

Allen Frances, M.D., was chair of the DSM-IV Task Force and of the department of psychiatry at Duke University School of Medicine, Durham, NC. He is currently professor emeritus at Duke.

Psychology Today

DSM5 in Distress

The DSM’s impact on mental health practice and research
by Allen Frances, M.D.

Published on January 16, 2013 by Allen J. Frances, M.D., in DSM5 in Distress

Bad News: DSM 5 Refuses To Correct Somatic Symptom Disorder
Medical Illness Will Be Mislabeled Mental Disorder

“Many of you will have read a previous blog prepared by Suzy Chapman and me that contained alarming information about the new DSM 5 diagnosis ‘Somatic Symptom Disorder.’

“SSD is defined so over inclusively by DSM 5 that it will mislabel 1 in 6 people with cancer and heart disease; 1 in 4 with irritable bowel and fibromyalgia; and 1 in 14 who are not even medically ill.

“I hoped to be able to influence the DSM 5 work group to correct this in 2 ways: 1) by suggesting improvements in the wording of the SSD criteria set that would reduce mislabeling; and 2) by letting them know how much opposition they would face from concerned professionals and an outraged public if DSM 5 failed to slam on the brakes while there was still time…”

Read on here:

Bad News: DSM 5 Refuses To Correct Somatic Symptom Disorder
Medical Illness Will Be Mislabeled Mental Disorder

 

The most recent proposals for new category “J 00 Somatic Symptom Disorder”

IASP and the Classification of Pain in ICD-11  Prof. Dr. Winfried Rief, University of Marburg, Germany

Slide 9

Ed: Note that the requirement for “at least two from the B type criteria” was reduced to “at least one from the B type criteria” for the third iteration of draft proposals. This lowering of the threshold is presumably in order to accommodate the merging of the previously proposed “Simple Somatic Symptom Disorder” category into the “Complex Somatic Symptom Disorder” category, a conflation now proposed to be renamed to “Somatic Symptom Disorder,” also the disorder section name. A revised “Rationale/Validity” PDF document was not issued for the third and final draft. A brief, revised “Rationale” text was published on a Tab Page for the Somatic Symptom Disorder proposal and criteria but is no longer accessible.

Proposals, criteria and rationales, as posted for the third draft in May 2012, were removed from the DSM-5 Development website on November 15, 2012 and placed behind a non public log in. Criteria as they had stood for the third draft can no longer be viewed but are set out on Slide 9 in this presentation, which note, does not include three, optional Severity Specifiers that were included with the third draft criteria.

 

Related material

Mislabeling Medical Illness As Mental Disorder: The Eleventh DSM-5 Mistake, Psychology Today, DSM5 in Distress, Allen Frances, MD, December 8, 2012

Somatic Symptom Disorder could capture millions more under mental health diagnosis, Suzy Chapman

Submission to Somatic Symptom Disorder Work Group in response to third draft proposals, Suzy Chapman

Additional commentary

Oak Park Behavioral Medicine, Mind Your Body blog

Moving in the Wrong Direction

Dr Tiffany Taft, Ph.D., Northwestern University, December 13, 2012

IBS Impact IBS Impact blog

Proposed DSM-5 Criteria May Unfairly Label Physical Conditions as Psychological Disorders

Filed under Allen Frances, American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 draft proposals, DSM-5 field trials, DSM-5 in the media, Somatic Symptom Disorder, Somatoform Disorders Tagged with , , , , , , , , ,

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