Abstract: WPA Congress 2014: ICD-11 Symposia: Proposals and evidence for the ICD-11 classification of bodily distress disorders

Post #320 Shortlink: http://wp.me/pKrrB-43v

Edited version of the text published on 13.01.15.

Screenshot: ICD-11 Beta drafting platform, public version, 13.01.15; Chapter 07 Mental and behavioural disorders: Bodily distress disorder. Joint Linerarization for Mortality and Morbidity Statistics (JLMMS) view selected.

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BDD130115

“Show availability in main linearizations” view selected. Hover text for categories designated with three coloured key reads: “In Mortality and Morbidity, Primary Care High Resource, Primary Care Low Resource.” Hover text for categories designated with single blue key reads: “In Mortality and Morbidity.”

Two working groups, two sets of recommendations

The Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG) is one of two working groups advising the Mental Health Topic Advisory Group (TAG) on the potential revision of the ICD-10 Somatoform disorders categories for ICD-11.

The other group tasked with making recommendations on the revision of the Somatoform disorders is the Primary Care Consultation Group (PCCG), led by Prof Sir David Goldberg [1].

The S3DWG’s disorder construct is the construct that has been entered into the ICD-11 Beta drafting platform since 2012 [2].

Perversely, the S3DWG is proposing to call its disorder construct, “Bodily distress disorder” (BDD) – a term already being used outside ICD Revision, interchangeably, with Bodily Distress Syndrome (BDS), which is conceptually different.

To further muddy the waters, the PCCG has proposed calling its construct (which in 2012 had drawn heavily on the Fink et al BDS concept but with some DSM-5 SSD-like psychobehavioural features tacked on), “Bodily stress syndrome” (BSS).

So four very similar terms in play:

Bodily distress disorder (S3DWG, the construct entered into the Beta draft)

Body distress disorders (PCCG primary care disorder group heading*)

Bodily stress syndrome (PCCG disorder category sitting under Body distress disorders*)

Bodily Distress Syndrome (Fink et al, 2010)

*As proposals of the Primary Care Consultation Group had stood in mid 2012 [1].

The co-chair of the Mental Health TAG agrees that the S3DWG’s BDD and Fink et al’s (2010) BDS construct [3] are conceptually different; that there is potential for confusion between the two constructs and he will be discussing the issue of BDD terminology with the working group.

I shall be reporting on some recently proposed revisions to the definition text for BDD and its three Severities in my next post.

ICD-11 Symposia, XVI World Congress of Psychiatry, Madrid 2014

The have been no progress reports from either the S3DWG or the PCCG since emerging proposals for both working groups were published in 2012.

In September, Professor Oye Gureje, who chairs the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders, presented on “Proposals and evidence for the ICD-11 classification of Bodily Distress Disorders” as part of series of symposia on the development of the ICD-11 chapter for mental and behavioural disorders, at the World Psychiatric Association XVI World Congress, in Madrid.

In the absence of progress reports, I have requested that WHO/WPA make a transcript, slides or summary of this presentation publicly available.

In the meantime, the Abstracts for these ICD-11 symposia presentations can be found here:

http://www.tilesa.es/wpamadrid2014/abstracts/volume8/files/assets/basic-html/page352.html

also: http://www.tilesa.es/wpamadrid2014/abstracts/volume8/index.html#/352/zoomed

XVI World Congress of Psychiatry. Madrid 2014
Volume 2. Abstracts Regular Symposia

[…]

http://www.tilesa.es/wpamadrid2014/abstracts/volume8/files/assets/basic-html/page354.html

Session: Regular Symposium SPEAKER 3 Code SY469

Title: Proposals and evidence for the ICD-11 classification of bodily distress disorders

Speaker O. Gureje University of Ibadan, Ibadan, Nigeria Abstract Objectives:

The disorder categories currently classified in the group of Somatoform Disorders in ICD-10 have been the subject of controversy relating to their names, utility, reliability and acceptability.

The ongoing development of ICD-11 presents an opportunity to revise these categories so as to enhance their utility and overall acceptability.

Methods: The WHO ICD-11 Working Group on Somatic Distress and Dissociative Disorders has conducted a comprehensive review of the current status of Somatoform Disorders, drawing on literature from across the world and considered within diverse clinical experiences of experts who were consulted for the revision exercise. Proposals for DSM-5 and their suitability for global application were also considered.

Results: Important areas for improving the utility and reliability of disorders grouped under Somatoform Disorders were identified. These areas encompass name, content, structure and clarity of the phenomenology. A simplified category of Bodily Distress Disorder with an improved set of guidelines for making the diagnosis has been proposed to replace current Somatoform Disorders categories.

Bodily Distress Disorder may be described as Mild, Moderate, or Severe based on the extent of focus on bodily symptoms and their interference with personal functioning. Bodily Distress Disorder is currently a subject of tests of its utility and reliability in internet- and clinic-based studies via the extensive network that WHO has developed.

Conclusions: Bodily Distress Disorder holds the promise of addressing the various concerns that have been expressed in regard to the utility and applicability of categories currently classified under Somatoform Disorders. The overarching goal of the new category is to enhance the clinical care of patients presenting with these common and disabling conditions. Bodily Distress Disorder is currently a subject of tests of its utility and reliability in internet- and clinic-based studies, including in primary care settings, via the extensive network that WHO has developed.

References Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. International Review of Psychiatry 2012; 24:556-567

Further reading:

1 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 (2013) 30 (1): 76-87. Full free text: http://fampra.oxfordjournals.org/content/30/1/76.long

2 Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry 2012;24:556-67. [Abstract: PMID: 23244611]

3 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.  [Abstract: PMID: 20403500].

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

References for intention not to retain Neurasthenia for ICD-11

Post #319 Shortlink: http://wp.me/pKrrB-439

When ICD-10 was completed in 1992, Chapter V Mental and behavioural disorders retained the disorder category term, Neurasthenia, coded at F48.0.

This is how Neurasthenia is listed within ICD-10:

F48.0 Neurasthenia (with Fatigue syndrome as inclusion term).

 

Neurasthenia and ICD-10-CM

The forthcoming U.S. specific ICD-10-CM inherits Neurasthenia in Chapter 5 Mental, Behavioral and Neurodevelopmental disorders (F01–F99). But here, it is coded under F48.8, owing to the different coding arrangement for the F48–F48.9 entities within ICD-10-CM.

This is how Neurasthenia is listed in the ICD-10-CM Tabular List release for FY 2015*

Neurasthenia ICD-10-CM

*Although the FY 2015 ICD-10-CM is now available for public download and viewing, the codes in ICD-10-CM are not currently valid for any purpose or use until implementation date is reached.

 

Neurasthenia and DSM

There was no discrete category for Neurasthenia within DSM-IV or DSM-IV-TR; nor within DSM-5, which published in May 2013.

 

Neurasthenia and ICD-11 and ICD-11-PHC

I reported in 2012 that for ICD-11 and ICD-11-PHC, the intention is not to retain Neurasthenia.

Here are the references:

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

On Page 563 of this review paper, the authors state that a major highlight of the proposals of the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (the S3DWG sub working group) for the revision of the ICD-10 Somatoform disorders is that of subsuming all of the ICD-10 categories of F45.0–F45.9 and F48.0 under a single category with the proposed name of “Bodily distress disorder” (BDD).

For ICD-11-PHC (the abridged version of ICD for use in primary care and low resource settings), it is also the intention not to retain the primary care disorder category F48 Neurasthenia.

Here are the references for the primary care version:

International Psychiatry, Issue 1 Feb 2011, Royal College of Psychiatrists
http://www.rcpsych.ac.uk/pdf/IPv8n1.pdf

Page1: Box 1 The 26 conditions included in ICD10-PHC

F45 Unexplained somatic complaints*
F48 Neurasthenia*

*Not to be included in ICD11-PHC

Neurasthenia Box 1

See also:

Goldberg DP. Comparison between ICD and DSM diagnostic systems for mental disorders.
In: Sorel E, ed. 21st Century Global Mental Health. Jones & Bartlett Learning, 2012:37-53.
Sample Chapter 2: http://samples.jbpub.com/9781449627874/Chapter2.pdf
Publication date: August, 2012: http://www.jblearning.com/catalog/9781449627874/

See Page 51: Table 2.5 The 28 Disorders Proposed for ICD11-PHC

Note: If you compare the list of proposed disorders for the ICD-11 primary care version, as listed in the February 2011 International Psychiatry article (on Page 2, Box 2 The 28 disorders to be field tested for ICD11-PHC), with Table 2.5, above, you will note that some proposed disorder names, disorder groupings and disorder group headings have been revised since the article in International Psychiatry. Prof Goldberg has clarified that the iteration published in the sample book chapter was the more recent of the two, cf:

February 2011 iteration:

Body distress disorders

16 Bodily distress syndrome (new – was unexplained somatic complaints)
17 Health preoccupation (new)
18 Conversion disorder (was dissociative disorder)

 

Sample chapter (2012) iteration:

Body distress disorders

15 Bodily stress syndrome
16 Acute stress reaction
17 Dissociative disorder
18 Self-harm

This list of disorder proposals and groupings may have undergone further revision since publication of 21st Century Global Mental Health. But no progress reports have emerged on behalf of the Primary Care Consultation Group (PCCG) setting out more recent proposals for their “Bodily stress syndrome” construct since the Lam et al (July 2012) paper [1].

The disorder term and construct that is entered into the ICD-11 Beta draft and defined with three severities, is the S3DWG group’s conceptually different, but similarly named construct, Bodily distress disorder (BDD).

The ICD-11 S3DWG group is advising ICD Revision in parallel with the PCCG on a potential replacement for the ICD-10 Somatoform disorders.

It is the case, however, that some professional and consumer stakeholders are unaware that are two groups advising on the revision of the Somatoform disorders, that there have been two sets of proposals presented, or how they differ in conceptualization.

Four revised definition texts were submitted to the Proposals List on behalf of Mental Health TAG for “Bodily distress disorder (BDD)” on January 9–11, which will be the subject of a future post.

 

Further evidence of intention for Neurasthenia and ICD-11

In mid 2012, Neurasthenia was removed from the ICD-11 Beta draft and subsumed (along with the F45.0–F45.9 category terms) by the S3DWG’s new single diagnostic category, “Bodily distress disorder.”

However, a couple of redundant listings for Neurasthenia as an exclusion term remained in the Beta draft as legacy text from ICD-10, under Exclusions to Fatigue (Symptoms and signs chapter) and Generalized anxiety disorder (Mental and behavioural disorders chapter).

The deletion of Neurasthenia as an exclusion term to Fatigue has now been attended to.

The following proposal has been submitted via the Proposals facility on behalf of Mental Health TAG to address the legacy listing that remains under Generalized anxiety disorder and this provides additional and contemporary evidence of intention not to retain Neurasthenia as a disorder term for ICD-11:

Proposals List

Content Enhancement Proposal

Exclusion to Generalized anxiety disorder

neurasthenia

Submitted

Neurasthenia is not recommended for retention as a disorder category in ICD-11. Therefore, this exclusion term is not longer necessary.

–On behalf of Mental Health TAG

Geoffrey Reed 2015-Jan-09 – 10:09 UTC

 

If the concept is not retained in ICD-11, then the concept would be marked as obsolete rather than deleted. Thank you!

M. Meri Robinson Nicol 2015-Jan-26 – 13:14 UTC

 

References

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

ICD-11 Mental Health TAG opposes inclusion of “Functional clinical forms of the nervous system” under neurological conditions

Post #318 Shortlink: http://wp.me/pKrrB-42P

Update: In September, a series of ICD-11 Symposia were held at the World Psychiatric Association XVI World Congress, in Madrid. These included Symposium Code SY469: Proposals and evidence for the ICD-11 classification of dissociative disorders, the abstract for which can be found here (pages 354-355).

Update: For those registered for enhanced access to the public version of the ICD-11 Beta drafting platform, there are some recent proposals on behalf of Mental Health TAG for the Dissociative disorders block, here.

 

As previously posted:

In my September post, Briefing paper on ICD-11 and PVFS, ME and CFS: Part 2, I reported on a proposal by the ICD-11 Topic Advisory Group (TAG) for Neurology for the inclusion of a disorder group termed, “Functional clinical forms of the nervous system,” under Neurological conditions.

Under this new parent class, it has been proposed to locate a list of “functional disorders” (Functional paralysis or weakness; Functional sensory disorder; Functional movement disorder; Functional gait disorder; Functional cognitive disorder, Functional visual loss etc.).

In ICD-10, these conditions are accommodated under the Chapter V F44 Dissociative [conversion] disorders section.

In DSM-5, they are classified under “Conversion Disorder (Functional Neurological Symptom Disorder),” which is one of several categories that sit under the DSM-5 “Somatic Symptom and Related Disorders” section. They are cross-walked to ICD-10-CM’s F44.4 to F44.7 codes, depending on the symptom type.

The rationale for this proposed new parent class is set out in this recent paper by Stone et al:

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

Full free PDF

*Raad Shakir chairs the Topic Advisory Group for Neurology

See also (full paper behind paywall):

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

 

Opposition from Mental Health TAG

If you are registered for increased access to the public version of the Beta drafting platform, you can read the response from Mental Health TAG, here.

If you are not registered, see below:

Proposal for Deletion of the Entity

Functional clinical forms of the nervous system

Proposal Status: Submitted

Definition

Definition does not exist for this content

Rationale

This grouping should be deleted.

These are by definition not neurological conditions, as indicated by the phrase included in the definitions provided: ‘in which there is positive evidence of either internal inconsistency or incongruity with other neurological disorders’. If there is no evidence of a neurological mechanism or etiology, the rationale for including these in the classification of neurological disorders is unclear to say the least.

In contrast, these have always been viewed as mental disorders (from the days of Sigmund Freud), and there is no evidence about their etiology or mechanism that is inconsistent with that formulation.

Prior to ICD-10, these conditions were conceptualized as Conversion Disorders. This terms is considered obsolete because it refers to a psychodynamic mechanism that is theoretical and not ideally descriptive. ICD-10 offered a transitional title, calling them Dissociative [conversion] disorders.

For ICD-11, the proposals for Mental and Behavioural Disorders refer to these as Dissociative disorders, dropping the ‘Conversion’ part of the term. Dissociative disorders are defined descriptively, as ‘characterized by disruption or discontinuity in the normal integration of memories of the past, awareness of identity, immediate sensations, and control over bodily movements that are not better explained by another mental and behavioural disorder, are not due to the direct effects of a substance or medication, and are not due to a neurological condition, sleep-wake disorder, or other disorder or disease. This disruption or discontinuity may be complete, but is more commonly partial, and can vary from day to day or even from hour to hour.’ There is not basis for suggesting that this formulation is inconsistent with the phenomena proposed for inclusion here as ‘Functional clinical forms of the nervous system’.

The fact that neurologists may be asked to evaluate these conditions is not an adequate rationale for defining them as neurological disorders, nor are concerns about reimbursement policies that are unwisely based on divisions among specialists’ scope of practice based on ICD chapters.

The Mental Health TAG is aware that there is a vocal group of advocates for this terminology among neurologists. In fact, this terminology was included as alternate terminology in DSM-5. However, in DSM-5, these are still very clearly classified as Mental disorders.

Similarly, these terms can be added as inclusion terms to the equivalent categories in the Mental and behavioural disorders chapter.

In spite of its popularity among at least some neurologists, this terminology is currently viewed in psychiatry as obsolete, and based on a mind-body split (division between ‘organic’ and ‘non-organic’) we are elsewhere attempting to remove from the ICD-11. The implied contrast is between a ‘real’ (medical) disorder and a ‘functional’ (psychiatric) disorder.

A further problem with this terminology is its inconsistency with WHO’s official policy use of terminology related to ‘functioning’ (function, functional), as defined in the ICF.

In some instances of the use of the term ‘functional’ in other parts of proposals for ICD-11, it is not clear that the proposals use the term ‘functional’ in this same sense, or if they mean something close to ‘idiopathic’. However, it is quite clear that what is meant in this group of proposals is ‘without neurological explanation or plausible or demonstrable etiology’.

However, this terminology is in any case problematic. In addition to requesting that this group of categories be deleted from the classification and instead integrated appropriately as inclusion terms in the chapter on Mental and Behavioural Disorders, the Mental Health TAG requests that the Classifications Team examine other uses of the term ‘functional’ in proposals for ICD-11 and consider either appropriate parenting in Mental and behavioural disorders or alternative terminology.

The Mental Health TAG also requests that this issue be revised by the Revision Steering Group (and or Small Executive Group) in order to arrive at an ICD-wide solution as efficiently as possible. The Mental Health TAG requests that this issue not simply be arbitrated by the same TAGs that have made these proposals.

–On behalf of Mental Health TAG

References

There are no references attached for this proposal item

Comments on this proposal

Comment

The Mental Health TAG also requests that this issue be revised by the Revision Steering Group (and or Small Executive Group) in order to arrive at an ICD-wide solution as efficiently as possible. The Mental Health TAG requests that this issue not simply be arbitrated by the same TAGs that have made these proposals.

–On behalf of the Mental Health TAG
Geoffrey Reed 2015-Jan-10 – 23:10

 

Comment

An alternative could be that this grouping could be retained but with appropriate primary parenting to Dissociative disorders in the Mental and behavioural disorders chapter.

Entities of ‘functional clinical forms’ have already been proposed to be added in the appropriate categories in Dissociative disorders. Most of them are included in Dissociative motor disorder, though several are included in Dissociative disorder of sensation. One is included in dissociative amnesia.

However, the name of these entries – i.e., functional disorders – remains an issue as described above, which should be resolved at the ICD-wide level.

Note that if the solution selected involved retaining these categories, perhaps renamed, but primary parenting them appropriately in Dissociative disorders, it will be more appropriate to move the secondary parented categories to the main Disease of the nervous system chapter rather than listing them in clinical forms.

–On behalf of the Mental Health TAG
Geoffrey Reed 2015-Jan-12 – 09:14 UTC

 

I will update if further comment is uploaded on behalf of the Mental Health TAG, the Neurology TAG, ICD-11 Revision Steering Group, the WHO classification experts etc.

 

Note for stakeholders with an interest in the ICD-10 G93.3 categories: There is currently no inclusion within any chapter of the ICD-11 Beta draft 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, FM et al to be speciality driven manifestations of a similar underlying functional disorder might be keen to see these terms aggregated.

On July 24, 2014, ICD Revision’s Dr Geoffrey Reed stated 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.

ICD-11 revision process: External assessment now due April 1

Post #317 Shortlink: http://wp.me/pKrrB-42A

This post is the first in a series of updates on the ICD-11 revision process.

Last July, in Call for Expressions of Interest to review the ICD revision process, I reported that the World Health Organization (WHO) Office of the Assistant Director General, Health Systems and Innovation had posted a call for expressions of interest from suitable contractors to conduct an interim assessment of the 11th Revision of the International Classification of Diseases (ICD).

Lead time was four months, with the completed final report targeted for submission to WHO by December 15, latest.

With no sign of a report in the offing, I asked WHO’s Bedirhan Üstün, last week, whether an interim assessment had been delivered in December and did WHO intend to publish a summary report.

Dr Üstün confirmed on January 10 that the external report will now be delivered by April 1 and that it “will certainly be made available.”

So the delivery of this interim assessment has slipped targets by some 15 weeks.

I have no information about the contractors who successfully pitched for the review and no date by which WHO aims to release a copy of the report’s findings (or summary of key findings).

The Call for Expressions of Interest to review the ICD revision process Terms of Reference document can still be downloaded from the WHO website, here:

or open, here, on Dx Revision Watch:

Click link for PDF document  Call for Expressions of Interest to review the ICD revision process

ICD-11 Beta drafting platform

Go here for the public version of the ICD-11 Beta drafting platform.

According to Slide #4 of this WHO presentation on Slideshare, the Joint Linearization for Mortality and Morbidity and Statistics (JLMMS) was expected to be frozen at certain points during the review process.

If you are registered with the public Beta platform for increased access and interaction with the draft, there are dropdowns from the Info tab for Downloads and Frozen Releases, eg:

Linearization Print Versions

Simplified Linearization Outputs

Linearization Index Tabulations

Frozen Releases

You may find the frozen release downloads here

 

When viewing the ICD-11 Beta drafting platform bear in mind that the platform may still be subject to freeze and more recent proposals will have been made across all chapters.

From the Contributions tab, you can pull up the Proposals pages for specific terms or view the Proposals List. New proposals are added on a daily basis and date back to July 2014.

Proposals can be filtered according to Proposal Status (Saved; Submitted; External Review, Accepted, Implemented, Rejected etc.) or filtered by Proposal Type.

Before scrutinizing or quoting from the public version of the Beta draft, I strongly advise that you first check the Proposals List for more recent revisions since the public Beta drafting platform may not display the most recent proposals.

You may find later proposals for revisions to the text of definitions and other Content Model descriptors; additions or deletions to Inclusions, Exclusions, Synonyms; deletions or additions of entities; revisions to terminology; proposals for complex hierarchical changes etc. Please also read these Caveats.

Caveats: The ICD-11 Beta drafting platform is not a static document: as a work in progress, it is subject to daily edits and revisions, to field test evaluation and to approval by ICD Revision Steering Group and WHO classification experts. Not all new proposals may survive internal/external review or field testing. Chapter numbering, codes and sorting codes currently assigned to ICD categories may change as chapters, entities, content and parent/child hierarchies are reorganized. The public version of the Beta draft is incomplete; not all “Content Model” parameters display or are populated; the draft may contain errors and omissions of categories and Index terms.

 

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

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

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

14 http://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

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

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

An abridged version of the core ICD-11 for use in primary care and low resource settings, 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 abridged version of ICD-10. 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 http://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/

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