Proposals for the classification of Chronic pain in ICD-11: Part 2

Post #326 Shortlink: http://wp.me/pKrrB-48Y

Click here for Part 1

Note: Since these proposed changes for Fibromyalgia were published on the ICD-11 Beta draft, in 2015, not a single comment has been posted via the ICD-11 Comment or Proposals mechanisms from stakeholder patient organizations, the clinicians who advise them, allied health professionals or disability lawyers.

Part 2: Fibromyalgia

On May 5, 2015, the ICD-11 Beta draft category, Fibromyalgia, was deleted from the Diseases of the musculoskeletal system and connective tissue chapter and relocated under Symptoms, signs, clinical forms, and abnormal clinical and laboratory findings, not elsewhere classified (currently numbered Chapter 21 in the Beta draft).*

*Source: Fibromyalgia Change History, 05 May 2015

For ICD-11, Fibromyalgia is proposed to be listed under the Symptoms, signs chapter, under a proposed new parent category called Multi-site primary chronic pains syndromes, under new parent class, Chronic primary pain, under new parent class, Chronic pain.

No rationale for a proposed change of chapter location and parent class was recorded in the Change History at the time of the edit.

See Part 1 and the June 2015 paper A classification of chronic pain for ICD-11. Rolf-Detlef Treede, Winfried Rief et al for the IASP working group’s proposals for locating irritable bowel syndrome; chronic nonspecific back pain; chronic pelvic pain; chronic widespread pain, fibromyalgia, and potentially some other conditions where chronic pain is a feature, under proposed new disorder category, Chronic primary pain.

Some of the categories listed under the new Chronic pain parent are proposed to be secondary parented (cross-referenced) to other chapters. But it is unclear from the proposals, whether Fibromyalgia is intended to be secondary parented to the Diseases of the musculoskeletal system and connective tissue chapter or to Diseases of the nervous system, or whether some disorders categorized under Chronic primary pain disorder would have no secondary parent chapter association beyond the Symptoms, signs chapter.

ICD-11 Beta Foundation Component

In the ICD-11 Foundation Component (where all ICD-11 entities are listed), Fibromyalgia is listed under Chronic pain > Primary chronic pain > Multi-site primary chronic pains syndromes, and assigned a Definition and other Content Model descriptors**.

View the Beta draft Foundation Component here: Fibromyalgia

**The current Beta draft Definitions for Fibromyalgia do not appear to have been revised from how the text had stood prior to its chapter relocation in May 2015.

(The likely source for the text entered into the Definition and Long Definition fields is this Orphanet page, apparently last updated in May 2007, but which appends links to more recent criteria and practice guidelines.)

 

From the ICD-11 Beta draft Foundation Component (accessed August 20, 2015):

Fibromyalgia

Fibro2208152


But in the Joint Linearization for Mortality and Morbidity Statistics (JLMMS), Fibromyalgia is not proposed to be listed with a discrete code assigned but rolled up as an Inclusion term under MAOE.112 Multi-site primary chronic pains syndromes.

View the Beta draft JLMMS linearization here: Fibromyalgia

FibroJMMLS1

This screenshot shows the hover text for Inclusion term, Fibromyalgia, in the JMMLS linearization:

Fibro as inlcusion term3

ICD-11 Beta drafting platform, public version: Joint Linearization for Mortality and Morbidity Statistics. Accessed August 20, 2015.

I am not a stakeholder or advocate for Fibromyalgia or for any of the several terms proposed to be categorized under the Primary chronic pain/Chronic primary pain parent term.

Consideration of the implications for aggregating Fibromyalgia, chronic widespread pain, irritable bowel syndrome, chronic nonspecific back pain, chronic pelvic pain and some other conditions where chronic pain is a predominate feature, under a new term in the Symptoms, signs chapter, on data collection, research, commissioning of services, access to treatments, reimbursement etc. is beyond the scope of this report.

But I urge stakeholder patient organizations, the clinicians who advise them, allied health professionals, occupational therapists and disability lawyers to scrutinize the IASP Task Force paper, the Beta draft rationale and proposals documents, proposed definitions and other descriptive content and to register with the Beta draft to submit comments and make formal suggestions for improvements via the Proposal Mechanism, (supported with references, where possible).

There is a considerable amount of psychosomatics in the Detailed Proposals document for Primary chronic pain. There is disorder description and criteria overlap with ICD-11’s proposed Bodily distress disorder; with DSM-5 Somatic symptom disorder “Predominate pain” specifier; with Somatoform pain disorder and the German ICD-10-GM: F45.41: Chronic pain disorder with somatic and psychological factors – a classification which Prof Winfried Rief was instrumental in getting inserted into the German ICD-10-GM, in 2009.

Prof Winfried Rief slide presentation:

Back in 2012, Chronic pain Task Force co-chair, Prof Winfried Rief, had presented tentative ideas for potential frameworks for a new ICD-11 chapter or section for pain conditions:

2012 SIP Symposium Workshop presentation: IASP and the Classification of Pain in ICD-11

Note in Slides #12-15, a number of the so-called, functional somatic syndromes, and in Slide #15, “Chronic Fatigue Syndrome, Neurasthenia” [sic], had been floated by Prof Rief, in 2012, as potential partners in any proposed new chapter or section for chronic pain.

Key documents for scrutiny by patient organizations, clinicians and advocates

A classification of chronic pain for ICD-11 Treede R, Rief W, et al, June 2015

Detailed Rationale/proposals/criteria documents:

Chronic pain 2015-May-26 Antonia Barke

Chronic primary pain 2015-June-29 Antonia Barke

Chronic visceral pain 2015-May-26 Antonia Barke

Chronic musculoskeletal pain 2015-May-26 Antonia Barke

Current ICD-11 Beta draft location Foundation Component listing for Irritable bowel syndrome

ICD-11 Beta draft Foundation Component listing for Fibromyalgia

ICD-11 Beta draft JLMMS listing for Fibromyalgia [rolled up as Inclusion in Multi-site primary chronic pains syndromes]

Click here for Part 1

 

Further reading

Medscape article: Chronic Pain Syndrome, Manish K Singh, MD; Chief Editor: Stephen Kishner, MD, MHA, updated July 15 2015

The Changing Nature of Fibromyalgia. Frederick Wolfe and Brian Walitt


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 labels currently assigned to ICD categories may change as chapters and parent/child hierarchies continue to be reorganized. The public version of the Beta draft is incomplete: not all Content Model parameters display or have been populated; definitions may be absent, awaiting revision or subject to further revision. The draft may contain errors and category omissions.
For some categories, detailed proposals/rationales/criteria are being posted by Topic Advisory Groups (TAGs) and can be viewed via the Proposals Mechanism, for which registration is required. Additional proposals/suggestions for modifications submitted by work groups or stakeholders which are awaiting review and decisions may also be found via the Proposals Mechanism.

Proposals for the classification of Chronic pain in ICD-11: Part 1

Post #325 Shortlink: http://wp.me/pKrrB-488

Part 1

In 2013, the International Association for the Study of Pain (IASP) launched a working group tasked with developing proposals for the classification of chronic pain within ICD-11, for application in primary care, low-resource environments and clinical settings for specialized pain management.

The Classification of Chronic Pain Task Force is working under the auspices of WHO/ICD Revision. The group is co-chaired by IASP President, Prof. Dr. med. Rolf-Detlef Treede, and Winfried Rief PhD, Professor of Clinical Psychology and Psychotherapy, University of Marburg.

The working group held its first meeting in March 2013. At that point, the potential for creating a new Pain chapter  in ICD-11 was reportedly under consideration (Organizing Principles, Classifying pain for healthcare, Carol Cruzan Morton, April 2013).

But the concept of a dedicated pain chapter for ICD-11 appears to have been set aside in preference to expanding the existing Chronic pain classification within the Symptoms, signs, clinical forms, and abnormal clinical and laboratory findings, not elsewhere classified chapter (currently numbered Chapter 21 in the Beta draft).

Under this new Chronic pain disorder section, “…diagnoses in which pain is either the sole or a leading complaint of the patient will be listed.”

Additionally, chronic pain conditions considered neglected in previous ICD versions, for example, chronic cancer pain, chronic neuropathic pain and chronic visceral pain, will be represented under Chronic pain with their own codes.

A simplified version of the proposed framework for use by primary care practitioners was expected to undergo field testing in several countries. A more detailed specialty ICD-11 linearization for use by pain specialists is also envisaged.

 

What are the most recent proposals from the IASP Chronic Pain Task Force?

In March 2015, the IASP working group published a paper setting out proposals and rationales for the structure of a new Chronic pain section and the disorders classified within it.

Initially, the paper was behind a paywall, but was published under Open Access in June 2015. You can read the paper in html and PDF format here:

A classification of chronic pain for ICD-11. Rolf-Detlef Treede, Winfried Rief et al
Pain. 2015 Jun; 156(6): 1003-7. Published online 2015 Mar 14. PMCID: PMC4450869

Under the proposed framework, chronic pain will be defined as pain that persists or recurs for more than three months.

There are optional specifiers for each diagnosis for recording evidence of psychosocial factors and pain severity. Pain severity can be graded on the basis of pain intensity, pain-related distress, and functional impairment.

“Detailed Explanation of the Proposal” texts for Chronic pain and its 7 child categories have been uploaded to the ICD-11 Beta draft Proposals Mechanism on behalf of the working group.

These are important texts setting out detailed proposals, rationales and criteria and are open for review, comment and suggestions for changes, for which registration with the Beta draft is required. There are links for these texts below but for ease of reference, I am including selected of these texts in .doc format.

Proposed disorder categories

The new ICD section for Chronic pain is proposed to comprise the most common clinically relevant disorders, divided into 7 groups (Fig. 1, Treede et al, 2015).

 

Chapter 21: Symptoms, signs, clinical forms, and abnormal clinical and laboratory findings, not elsewhere classified 

General symptoms, findings and clinical forms

General symptoms

(…)

Pain

Chronic pain [Detailed Proposals] [.doc document]

Update: Proposals for Chronic pain replaced with [Detailed Proposals] Antonia Barke 17.09.15

2.1. Chronic primary pain [Detailed Proposals] [.doc document]

Subclass: Mono-site primary chronic pains syndromes [Detailed proposals not available]

Subclass: Multi-site primary chronic pains syndromes [Detailed proposals not available]

  Fibromyalgia [Detailed proposals not available]

2.2. Chronic cancer pain [Detailed Proposals]

2.3. Chronic postsurgical and posttraumatic pain [Detailed Proposals]

2.4. Chronic neuropathic pain [Detailed Proposals]

2.5. Chronic headache and orofacial pain [Detailed Proposals]

2.6. Chronic visceral pain [Detailed Proposals] [.doc document]

2.7. Chronic musculoskeletal pain [Detailed Proposals] [.doc document]

 

According to its Detailed Proposals text, Chronic primary pain is proposed to be primary parented under Chronic pain and secondary parented to Diseases of the nervous system.

Other chronic pain disorders are proposed to be primary parented under Chronic pain and secondary parented to Neoplasms, Diseases of the nervous system, Diseases of the respiratory system, Diseases of the digestive system, Diseases of the musculoskeletal system and connective tissue or Diseases of the genitourinary system, according to body system.

The “Appendix Structure of the chapter on chronic pain” (page 4 of the Treede et al paper) sets out a complex hierarchy of subclasses.

It’s not evident whether all or selected of these additional subclasses are intended to be added under the disorder categories that are currently displaying in the Beta draft, or whether additional subclasses would be reserved for use in a specialist linearization for chronic pain.

The Treede et al paper describes Chronic primary pain as:

2.1. Chronic primary pain
Chronic primary pain is pain in 1 or more anatomic regions that persists or recurs for longer than 3 months and is associated with significant emotional distress or significant functional disability (interference with activities of daily life and participation in social roles) and that cannot be better explained by another chronic pain condition. This is a new phenomenological definition, created because the etiology is unknown for many forms of chronic pain. Common conditions such as, eg, back pain that is neither identified as musculoskeletal or neuropathic pain, chronic widespread pain, fibromyalgia, and irritable bowel syndrome will be found in this section and biological findings contributing to the pain problem may or may not be present. The term “primary pain” was chosen in close liaison with the ICD-11 revision committee, who felt this was the most widely acceptable term, in particular, from a nonspecialist perspective.

and (under 2.7. Chronic musculoskeletal pain):

…Well-described apparent musculoskeletal conditions for which the causes are incompletely understood, such as nonspecific back pain or chronic widespread pain, will be included in the section on chronic primary pain.

 

Under two new terms: Mono-site primary chronic pains syndromes and Multi-site primary chronic pains syndromes the IASP working group proposes to locate irritable bowel syndrome; chronic nonspecific back pain; chronic pelvic pain; chronic widespread pain; fibromyalgia, and potentially some other conditions where chronic pain is a feature.

This “new phenomenological definition” appears to be an umbrella diagnosis for a number of the so-called, “functional somatic syndromes.”

There is a considerable amount of psychosomatics in the Detailed Proposals document for Primary chronic pain.

It is unclear whether the intention is to add discrete categories for irritable bowel syndrome; chronic nonspecific back pain; chronic widespread pain, and other diagnoses proposed to be aggregated under the Chronic primary pain term. But at the time of compiling this report, Fibromyalgia is the only term to have been inserted.

In the ICD-11 Beta draft, Irritable bowel syndrome remains at its current location in Diseases of the digestive system chapter, under Irritable bowel syndrome and certain specified functional bowel disorders.

It is therefore unclear whether the ICD-11 Revision Steering Group and the IASP working group have reached consensus over the proposed relocation of Irritable bowel syndrome to the Symptoms, signs chapter, under a new Chronic primary pain parent.

I have requested clarification of current intentions for Irritable bowel syndrome via the Proposal Mechanism comments facility but have received no response.

 

Proposed new ICD-11 categories

These are the disorder categories as currently entered into the ICD-11 Beta drafting platform under parent class: Pain > Chronic pain for the Foundation Component:

Chapter: Symptoms, signs, clinical forms, and abnormal clinical and laboratory findings, not elsewhere classified

Chronic pain 2 20.08.15

ICD-11 Beta drafting platform, public version: Foundation Component. Accessed August 20, 2015.

A note about discrepancies in terminology between ICD-11 Beta draft and the Treede et al paper: The term, Primary chronic pain, as entered into the Beta draft, is proposed to be amended to Chronic primary pain, in line with the classification structure set out in Table: Appendix Structure of the chapter on chronic pain on page 4 of the Treede et al paper.

The Beta draft’s Mono-site primary chronic pains syndromes and Multi-site primary chronic pains syndromes are termed Localized chronic primary pain (including nonspecific back pain, chronic pelvic pain) and Widespread chronic primary pain (including fibromyalgia syndrome) in the Treede et al paper.

(I have also enquired whether the Mono- and Multi-site primary chronic pains syndromes terms are to be amended to Mono- and Multi-site chronic primary pain syndromes but have received no response.)

If you are a stakeholder in any of the terms proposed to be classified under this new Symptoms, signs chapter section, please scrutinize the IASP Task Force paper and the Detailed Proposals documents and bring these proposals to the attention of your patient organizations.

 

The G93.3 legacy terms: Postviral fatigue syndrome; Benign myalgic encephalomyelitis; Chronic fatigue syndrome

I have no documentary evidence of intention to locate any of the ICD-10 G93.3 legacy terms under this proposed Symptoms, signs chapter Chronic pain > Chronic primary pain section.

WHO’s, Dr Robert Jakob, told me in June 2015 that he expects TAG Neurology to release proposals and rationales for the classification of the G93.3 legacy terms in September or December, latest. See summary of discussions with WHO personnel, June 19, 2015 http://wp.me/pKrrB-46A

Update: 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. I was told on February 2, 2016 that “[ICD-11 Revsion is] still working on the extensive review and the conclusions.”

Click here for Part 2 Fibromyalgia

 


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 labels currently assigned to ICD categories may change as chapters and parent/child hierarchies continue to be reorganized. The public version of the Beta draft is incomplete: not all Content Model parameters display or have been populated; definitions may be absent, awaiting revision or subject to further revision. The draft may contain errors and category omissions.
For some categories, detailed proposals/rationales/criteria are being posted by Topic Advisory Groups (TAGs) and can be viewed via the Proposals Mechanism, for which registration is required. Additional proposals/suggestions for modifications submitted by work groups or stakeholders which are awaiting review and decisions may also be found via the Proposals Mechanism.
 

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

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

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 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

Editorial: Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (Goldberg and ICD-11-PHC)

Post #308 Shortlink: http://wp.me/pKrrB-3Uh

An editorial and four papers on the theme of medically unexplained symptoms, first published in the June 2013 issue of Mental Health in Family Medicine and embargoed until June 1, 2014, are now accessible for free at: http://www.ncbi.nlm.nih.gov/pmc/issues/229531/

Mental Health in Family Medicine is the official journal of The World Organization of Family Doctors (Wonca) Working Party on Mental Health.

The editorial: Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (MUS), is co-authored by Prof Gabriel Ivbijaro and Prof Sir David Goldberg.

Prof Ivbijaro is Editor in Chief, Mental Health in Family Medicine, a past chair of Wonca Working Party on Mental Health and was elected president elect of the World Federation of Mental Health in August 2013.

Prof Goldberg chairs the WHO Primary Care Consultation Group (PCCG) that is leading the development of the primary care classification of mental and behavioural disorders for ICD-11 (known as ICD-11-PHC).

This report sets the editorial into context.

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ICD-11-PHC

ICD-11-PHC is an abridged version of the ICD-11 classification being developed for use by clinicians and (often non-specialist) health-care workers in a wide range of global primary care settings and low- and middle-income countries.

The primary care version of the ICD-11 mental and behavioural disorders chapter is being developed simultaneously with the specialty settings version. Disorders that survive the ICD-11-PHC field tests must have an equivalent disorder in the main ICD-11 classification.

The PCCG work group is developing and field testing 28 mental disorders for ICD-11-PHC, which includes making recommendations to the International Advisory Group for a potential replacement for the existing ICD-10-PHC category, F45 Unexplained somatic symptoms/medically unexplained symptoms.

A second ICD-11 working group, the Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG), is advising on the revision of ICD-10’s Somatoform disorders in parallel with the PCCG and has proposed an alternative disorder construct.

Thus far, neither working group has commented publicly on the alternative proposals presented by the other group, how the two groups interrelate, whether they are expected to reach consensus over a potential new conceptual framework to replace the existing Somatoform disorders, or to what extent consensus has been reached.

No public progress reports are being published by either group, or by the International Advisory Group, and those monitoring and reporting on the revision of these ICD-10 Chapter V categories rely on journal papers, editorials, symposia presentations, internal ICD Revision summary reports and meeting materials and on the limited content in the public version of the ICD-11 Beta drafting platform to piece together updates.

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Does this editorial advance our understanding of current proposals?

Key point: this Ivbijaro and Goldberg editorial is now over 12 months old and should be read with the caveat that proposals by the PCCG working group may have been revised since the editorial was first published.

As a source of information on the current status of proposals by the Primary Care Consultation Group (PCCG), this editorial is problematic.

Firstly, it is over 12 months old and the PCCG’s proposals may have undergone further revision since the editorial was submitted for publication.

At the time of submission, the authors anticipated imminent field testing for ICD-11-PHC but the projected start dates for internet and clinic-based field testing, which will assess utility of proposed ICD-11 diagnostic guidelines in different types of primary care settings with particular focus on low- and middle-income countries, may be delayed. (It is on record that field tests were running behind schedule and there have been funding shortfalls, two factors in WHO’s decision, earlier this year, to shift WHA approval of ICD-11 from 2015 to 2017 to allow more time for incorporation of field test results.*)

*WICC ICPC-3 presentation, June 2013, M Klinkman, Slide 29: http://www.ph3c.org/PH3C/docs/27/000312/0000451.pdf
Committee for the Coordination of Statistical Activities, Twenty-second Session 4-6 September 2013, Items for discussion and decision: Item 8 of provisional agenda, Pages 8-10:
http://unstats.un.org/unsd/accsub/2013docs-22nd/SA-2013-12-Add1-Health-WHO.pdf

Secondly, the editorial does not declare Prof Goldberg’s interest as chair of the PCCG. It does not clarify whether the views and opinions expressed within the editorial represent the views and opinions of its authors or represent the official positions of the PCCG working group, or of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders, or of the ICD-11 Revision Steering Group.

Thirdly, its brevity. This is a short editorial – not a paper:

it does not discuss the PCCG’s rationales for the changes made to its own proposals, as published in 2012.

it does not retrospectively review and compare the PCCG’s 2012 proposals for a construct which the group proposed to call, at that point, Bodily stress syndrome, with the 2012 proposals of the Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG) for an alternative construct called Bodily distress disorder.

it does not compare the PCCG’s revised proposals, as they stood in June 2013, with the S3DWG’s proposals, at that point.

crucially, it does not clarify why, if the PCCG’s June 2013 proposals were expected to be progressed to field trials, it is the S3DWG’s Bodily distress disorder diagnostic construct that has been listed and defined in the Beta draft for the Foundation, Mortality and Morbidity, Primary Care High Resource, Primary Care Low Resource linearizations.

Key points: It is difficult to disentangle the authors’ views and opinions from official position of the PCCG working group or the International Advisory Group. The editorial provides no discussion of the S3DWG’s alternative proposals or whether any consensus between the two groups had been reached. The opinions of the International Advisory Group on both sets of proposals are not discussed.

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What new information does this June 2013 editorial provide since the 2012 Lam et al paper?

that the authors consider the Fink P, Schröder A. 2010 paper [1] provides evidence that the term Bodily Distress Syndrome has both face and content validity.

that the authors consider the concept Bodily Distress Syndrome as “a possible diagnosis that captures the range of presentations in primary care, which may be acceptable to both patient and medical professional”, for which the authors list “a range of poorly defined disorders [that include] chronic fatigue syndrome (CFS), fibromyalgia, irritable bowel syndrome (IBS), chronic pain syndrome, hyperventilation syndrome, non-cardiac chest pain and somatoform disorder.”

that the authors consider the forthcoming revision of the ICD provides an opportunity to include BDS in a revised classification for primary care, the ICD11-PHC, which is planned to be field tested in eight countries.

• that “not only has BDS replaced ‘medically unexplained symptoms’, but also ‘health anxiety’ has replaced ‘hypochondriasis'” and that the field trials “would examine whether primary care physicians wish to distinguish health anxiety (which may have few or indeed no somatic symptoms) from BDS (which by definition has at least three different somatic symptoms).”

According to the editorial, the PCCG had evidently revised its proposal for what to call its new disorder category since publication of the Lam et al paper, in 2012.

In 2012, the PCCG’s proposed term for ICD-11-PHC was Bodily stress syndrome (BSS). In this June 2013 editorial, the authors are using the term, Bodily distress syndrome (BDS).

In 2012, criteria for the PCCG’s BSS had included the requirement for psychobehavioural responses, which do not form part of the Fink et al 2010 BDS criteria – which are based on symptom patterns.

The editorial does not clarify whether, in June 2013, the PCCG (or its chair) was now advancing that the BDS construct and criteria should progress unmodified for ICD-11-PHC testing and evaluation, that is, in the form already operationalized in research and clinical settings in Denmark or would be modified for the purpose of ICD-11-PHC field trials, or to what extent.

(There is no revised criteria set included in this editorial for comparison with the detailed disorder descriptions and criteria set that had been included in Appendix 2 of the 2012 Lam et al paper.)

 Key point: The editorial provides no details or discussion of a 2013 field trial protocol. The most recent disorder descriptions, diagnostic guidelines and criteria proposed by the PCCG are not in the public domain. It is not known whether a field trial protocol has been finalized, whether or when it will be made available for public scrutiny, or whether field trials have started yet.

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Before reading the editorial please read the appended notes and if you are linking to the editorial on social media or forums, please also include a link back to this report because it is important that this editorial is placed into context.
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Ment Health Fam Med.
2013 Jun;10(2):63-4.
Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (MUS).
Ivbijaro G, 1 Goldberg D. 2
Author information
1 Editor-in-Chief Mental Health in Family Medicine, Medical Director, Waltham Forest Community and Family Health Services, and Vice President (Europe), World Federation for Mental Health.
2 Professor Emeritus and Fellow, King’s College, London.PMID: 24427171
[PubMed] PMCID: PMC3822636 [Available on 2014/6/1]
Article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822636/?report=classic
PubReader: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822636/?report=reader
PDF – 44KB: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822636/pdf/MHFM-10-063.pdf

+++

Two ICD Revision working groups – two sets of proposals published in 2012:

In their respective 2012 journal papers, the two working groups presented divergent conceptual proposals and neither group refers to the work being undertaken by the other group.

The 17 member Expert Working Group on Somatic Distress and Dissociative Disorders (the S3DWG) is an ICD Revision sub working group advising specifically on the revision of ICD-10’s Somatoform disorders.

Prof emeritus Francis Creed (a former DSM-5 Somatic Symptom Disorder work group member) is a member of the S3DWG, and the group is chaired by Prof Oye Gureje.

In late 2012, Creed and Gureje published a paper which had included the S3DWG’s emerging proposals for a new, single diagnostic category that would subsume the existing Somatoform disorders categories F45.0 – F45.9 and Neurasthenia [2].

The S3DWG paper sets out the group’s remit which includes:

“To provide drafts of the content (e.g. definitions, descriptions, diagnostic guidelines) for somatic distress and dissociative disorder categories in line with the overall ICD revision requirements.

“To propose entities and descriptions that are needed for classification of somatic distress and dissociative disorders in different types of primary care settings, particularly in low- and middle-income countries.”

Which suggests that the proposals the S3DWG group are advancing are also being considered for utility in primary care and low resource settings, in parallel with those recommended by the PCCG.

The S3DWG’s 2012 paper had described a disorder model which it proposed to call Bodily distress disorder (BDD).

Key point: Although the Creed, Gureje 2012 paper does not acknowledge the congruency, the BDD disorder descriptions and criteria are conceptually close to DSM-5’s new Somatic symptom disorder (SSD).

With its

“much simplified set of criteria”; no assumptions about causality; elimination of the requirement that symptoms be “medically unexplained” as the central defining feature; inclusion of the presence of a co-occurring physical health condition; focus on identification of positive psychobehavioural responses (excessive preoccupation with symptoms, unreasonable illness fear, frequent or persistent healthcare utilization, activity avoidance for fear of damaging the body) in response to any (unspecific) persistent, distressing, single or multiple bodily symptoms; and with no requirement for symptom counts or symptom patterns from body or organ systems;

the group’s BDD construct had good concordance with DSM-5’s Somatic symptom disorder (SSD) and poor concordance with Fink et al’s Bodily Distress Syndrome.

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The PCCG’s Bodily stress syndrome (BSS):

In contrast, the PCCG’s 2012 paper [3] had described a disorder construct which it proposed to call Bodily stress syndrome (BSS), that drew heavily on Fink et al’s 2010 Bodily Distress Syndrome (BDS) disorder model [4].

BSS would replace ICD-10-PHC’s F45 Unexplained somatic symptoms/medically unexplained symptoms category. Primary care’s Neurasthenia category would also be eliminated for ICD-11-PHC.

Based (theoretically) on the “autonomic over-arousal” model, the PCCG’s BSS required symptom patterns from body systems to meet the diagnosis.

But, “If the symptoms are accounted for by a known physical disease this is not BSS.”

Which also mirrors Fink et al’s BDS – “if the symptoms are better explained by another disease, they cannot be labelled BDS. The diagnosis is therefore exclusively made on the basis of the symptoms, their complexity and duration” [4].

But the tentative BSS criteria, as presented by Lam et al, in 2012, also incorporated some DSM-5 SSD-like psychobehavioural responses, viz, “The patient’s concern over health expresses itself as excessive time and energy devoted to these symptoms.” (A straight lift from DSM-5’s SSD criteria.)

Psychological and behavioural responses do not form part of the Fink et al 2010 BDS criteria and their inclusion within BSS appeared to be a tokenistic nod towards accommodation of DSM-5’s SSD into any new conceptual framework for ICD-11. (The rationale for their insertion into an otherwise BDS-like construct is not discussed within the 2012 paper.)

Key point: In 2012, whilst highly derivative of BDS and the influence of PCCG group member, Marianne Rosendal, is clear, the proposed BSS model could not be described as a “pure” BDS model.

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How viable is BDS for incorporation into ICD-11?

The vice-chair of the PCCG is Dr Michael Klinkman, a GP who represents WONCA (World Organization of Family Doctors). Dr Klinkman is current convenor of WONCA’s International Classification Committee (WICC) that is responsible for the development of ICPC-2.

Dr Marianne Rosendal (Department of Public Health, Aarhus University), who has published with Prof Per Fink, is the European representative on WONCA’s International Classification Committee and a member of the PCCG.

In addition to the revision of ICD-10 and ICD-10-PHC, the ICPC-2 (International Classification of Primary Care, Second edition), which classifies patient data and clinical activity in the domains of general/family practice and primary care, is also under revision.

Per Fink and colleagues have been lobbying for their Bodily Distress Syndrome construct to be integrated into forthcoming classification systems and adopted as a diagnosis by primary care practitioners.*

*Budtz-Lilly A: The Research Unit for General Practice, School of Public Health, Aarhus University, Denmark. Bodily Distress Syndrome: A new diagnosis for functional disorders in primary care, EACLPP 2012 Conference Abstract, p 17.

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Proposed new classification

There are a number of reasons why the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders and the ICD Revision Steering Group might have difficulty justifying approval of any new disorder construct that seeks to arrogate the so-called “functional somatic syndromes,” CFS, IBS and Fibromyalgia, and subsume them under a new, overarching disorder category that also subsumes Neurasthenia and the Somatoform disorders.

limited independent evidence for construct validity, utility and safety of application of BDS in adults and children.

no requirements within BDS criteria for positive psychobehavioural features – location within the ICD-11 mental and behavioural disorders chapter is therefore problematic.

potential data loss, data disaggregation problems and code mapping issues resulting from loss of discretely coded terms currently located within various ICD chapters outside the mental and behavioural disorders chapter; loss of backward compatibility with ICD-10 codes and with ICD-10-CA, ICD-10-GM, ICD-10-AM and other country modifications. (Some countries may take many years to transition to ICD-11, or an adaptation of ICD-11.) Potential incompatibility problems mapping to SNOMED-CT.

• unacceptability to patients and medical professionals

medico-political sensitivities

BDS and SSD are divergent constructs; a hybrid between BDS and SSD-like characteristics is conceptually problematic and would present difficulties if the intention is to harmonize ICD-11 with DSM-5 for this section of the classification [5].

the DSM-5 to ICD-9/ICD-10-CM cross-walk already maps DSM-5 Somatic symptom disorder to ICD-9 code 300.82 (ICD-10-CM F45.1).

It has been proposed that Somatic symptom disorder is added to the U.S.’s forthcoming clinical modification as an inclusion term to F45.1, in the Tabular List and Index.* If approved by NCHS, ICD-10-CM and ICD-11 would lack congruency if a BDS-like disorder model were incorporated into ICD-11 to replace the existing Somatoform disorders, rather than an SSD-like model.**

*September 18-19, 2013 and March 19-20, 2014 NCHS/CMS ICD-10-CM Coordination and Management Committee meetings.
**Note: since early 2009, I have strongly opposed the introduction of SSD into the DSM-5, ICD-11 and ICD-10-CM, and I am not arguing, here, in favour of an SSD-like model to replace the existing ICD-10 Somatoform disorders. There is no public domain documentary evidence that the two ICD working groups are currently considering any alternative models as potential replacements for the Somatoform disorders.

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Has Professor Fink achieved his goal?

Disorders that survive the ICD-11-PHC field tests must have an equivalent disorder in the main ICD-11 classification.

With the criteria’s lack of positive psychobehavioural features presenting barriers for location within the ICD-11 mental and behavioural disorders chapter and with a hybrid between BDS and SSD-like features conceptually problematic, fitting BDS into ICD-11 isn’t the shoo in that Rosendal, Fink and colleagues had hoped for.

At the presentations on Functional Disorders held at the Danish parliament (March 19, 2014), Prof Fink had stated that he and his colleagues had tried to get WHO to incorporate a section for a special group of disorders where BDS could be placed that was located neither in psychiatry nor in general medicine, but had not been successful. [Creating a new ICD chapter or new parent class within an existing chapter for “interface” disorders may possibly have been proposed to ICD Revision.]*

But if a “pure” BDS (or a modification of BDS for ICD usage) is progressed to field testing over the next year or two, it should perhaps be considered whether ICD Revision has agreed to field test the PCCG’s proposal as a “straw man” construct to disprove its clinical utility, reliability and acceptability, with the intention of defaulting, after field trial evaluation, to a disorder construct that is conceptually closer to SSD, if the latter is already the preference of the International Advisory Group and the ICD Revision Steering Group.

*See: Constanze Hausteiner-Wiehle and Peter Henningsen. Irritable bowel syndrome: Relations with functional, mental, and somatoform disorders World J Gastroenterol 2014 May 28; 20(20): 6024-6030 Full free text
“An overarching category of general (medical-psychiatry) interface disorders could be a helpful conceptualization for the many phenomena that are neither only somatic nor only mental [32,56,79]. The ICD-11, awaited in 2015, offers a new chance to do that. The concept of a bodily distress syndrome (BDS) offers another scientifically coherent common basis for the classification of different dimensional graduations of IBS [80].

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WHO on Twitter:

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

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So what has been entered into the Beta drafting platform?

The term entered into the Beta platform (since February 2012) is Bodily distress disorder (the term favoured by the S3DWG working group) – not the term Bodily stress syndrome or Bodily Distress Syndrome.

A Definition for Bodily distress disorder was inserted around four months ago. There are no definitions or characterizations inserted yet for any of the three, uniquely coded severity specifiers (Mild; Moderate; Severe).

The psychological and behavioural features that characterize the disorder, as per the BDD Definition, are drawn from the disorder conceptualizations in the 2012 Creed, Gureje paper on emerging proposals for Bodily distress disorder which had described a disorder model with good concordance with DSM-5′s Somatic symptom disorder construct and poor concordance with Fink et al’s Bodily Distress Syndrome construct.

Key point: The term entered into the Beta drafting platform is Bodily distress disorder (the term favoured by the S3DWG working group) with a Definition based on disorder conceptualizations in the 2012 Creed, Gureje paper which had described a disorder model with good concordance with DSM-5′s Somatic symptom disorder and poor concordance with Fink et al’s Bodily Distress Syndrome construct.

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This Dx Revision Watch post sets out (with screenshots) the most recent changes to the Beta drafting platform for the listing of BDD and the current Definition:

Recent changes to ICD-11 Beta drafting platform for “Bodily distress disorder”

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Forthcoming symposium presentation:

In September, Oye Gureje (chair ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders), will be presenting 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 on mental and behavioural disorders, at the World Psychiatric Association XVI World Congress, in Madrid, Spain, 14–18 September 2014 [6].

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Field testing:

Field testing on a potential replacement for the ICD-10 Somatoform disorder categories is expected to be conducted over the next couple of years. Currently, there is no publicly available protocol or other information on the finalized characteristics, diagnostic guidelines, criteria, inclusions, exclusions, differential diagnoses etc. that are planned to be used for the field tests which would provide the level of detail lacking in the public version of the Beta drafting platform.

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Requests for clarification repeatedly stonewalled:

ICD Revision has been asked several times, via the Beta drafting platform, to clarify its current proposals for the framework and disorder construct for a replacement for the ICD-10 Somatoform disorders. ICD Revision has also been asked to comment on the following:

“If, in the context of ICD-11 usage, the S3DWG working group’s proposal for a replacement for the Somatoform disorders remains for a disorder model with good concordance with DSM-5’s SSD construct, what is the rationale for proposing to name this disorder “Bodily distress disorder”?

“Have the S3DWG, PCCG and Revision Steering Group given consideration to the significant potential for confusion if its replacement construct for the Somatoform disorders has greater conceptual alignment with the SSD construct but is assigned a disorder name that sounds very similar to, and is already being used interchangeably with an operationalized but divergent construct and criteria set?”

No clarifications have been forthcoming to date. Lack of progress reports by both working groups and the degree of confusion over the content of the Beta draft is hampering stakeholder scrutiny, discourse and input. It’s not surprising few papers have been published to date reviewing and discussing ICD Revision’s proposals for a potential replacement for the ICD-10 Somatoform disorders when information on the most recent proposals for both working groups is proving so difficult to obtain.

It’s time medical and allied professionals and advocacy organizations demanded transparency from ICD Revision for its current intentions.

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Caveats:

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

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References:

1. Fink P and Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. Journal of Psychosomatic Research 2010;68:415–26.

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

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

4. http://funktionellelidelser.dk/en/about/bds/

5. Creed F, Fink P: Research Clinic for Functional Disorders Symposium presentations, Aarhus University Hospital, May 15, 2014.

That SSD and BDS are divergent constructs is also discussed in: Medically Unexplained Symptoms, Somatisation and Bodily Distress: Developing Better Clinical Services, Francis Creed, Peter Henningsen, Per Fink (Eds), Cambridge University Press, 2011.

6. World Psychiatric Association XVI World Congress, Madrid, Spain, 14–18 September 2014.

 

New paper by Wolfe et al on reliability and validity of SSD diagnosis in patients with Rheumatoid Arthritis and Fibromyalgia

Post #295 Shortlink: http://wp.me/pKrrB-3LP

This post is an update to Post #284, November 17, 2013, titled:

Correspondence In Press in response to Dimsdale et al paper: Somatic Symptom Disorder: An important change in DSM

In December 2013, Journal of Psychosomatic Research published four letters in response to the Dimsdale el al paper including concerns from Winfried Häuser and Frederick Wolfe for the reliability and validity of DSM-5’s new Somatic symptom disorder:  The somatic symptom disorder in DSM 5 risks mislabelling people with major medical diseases as mentally ill.

A new paper has been published by PLOS One on February 14, 2014:

Symptoms, the Nature of Fibromyalgia, and Diagnostic and Statistical Manual 5 (DSM-5) Defined Mental Illness in Patients with Rheumatoid Arthritis and Fibromyalgia Frederick Wolfe, Brian T. Walitt, Robert S. Katz, Winfried Häuser

The paper is published under Open Access and includes the full SSD criteria in Table S1

The paper’s references include the following commentaries and an article by science writer, Michael Gross:

Frances A, Chapman S (2013) DSM-5 somatic symptom disorder mislabels medical illness as mental disorder. Australian and New Zealand Journal of Psychiatry 47: 483–484. doi: 10.1177/0004867413484525 [PMID 23653063]

Frances A (2013) The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill. BMJ: British Medical Journal 346. doi: 10.1136/bmj.f1580 [PMID 23511949]

Gross M (2013) Has the manual gone mental? Current biology 23: R295–R298. doi: 10.1016/j.cub.2013.04.009 Full text

Full paper, Tables and Figures in text or PDF format:

Symptoms, the Nature of Fibromyalgia, and Diagnostic and Statistical Manual 5 (DSM-5) Defined Mental Illness in Patients with Rheumatoid Arthritis and Fibromyalgia Frederick Wolfe, Brian T. Walitt, Robert S. Katz, Winfried Häuser

Text version

PDF version

Abstract

Purpose

To describe and evaluate somatic symptoms in patients with rheumatoid arthritis (RA) and fibromyalgia, determine the relation between somatization syndromes and fibromyalgia, and evaluate symptom data in light of the Diagnostic and Statistical Manual-5 (DSM-5) criteria for somatic symptom disorder.

Methods

We administered the Patient Health Questionnaire-15 (PHQ-15), a measure of somatic symptom severity to 6,233 persons with fibromyalgia, RA, and osteoarthritis. PHQ-15 scores of 5, 10, and 15 represent low, medium, and high somatic symptom severity cut-points. A likely somatization syndrome was diagnosed when PHQ-15 score was ≥10. The intensity of fibromyalgia diagnostic symptoms was measured by the polysymptomatic distress (PSD) scale.

Results

26.4% of RA patients and 88.9% with fibromyalgia had PHQ-15 scores ≥10 compared with 9.3% in the general population. With each step-wise increase in PHQ-15 category, more abnormal mental and physical health status scores were observed. RA patients satisfying fibromyalgia criteria increased from 1.2% in the PHQ-15 low category to 88.9% in the high category. The sensitivity and specificity of PHQ-15≥10 for fibromyalgia diagnosis was 80.9% and 80.0% (correctly classified = 80.3%) compared with 84.3% and 93.7% (correctly classified = 91.7%) for the PSD scale. 51.4% of fibromyalgia patients and 14.8% with RA had fatigue, sleep or cognitive problems that were severe, continuous, and life-disturbing; and almost all fibromyalgia patients had severe impairments of function and quality of life.

Conclusions

All patients with fibromyalgia will satisfy the DSM-5 “A” criterion for distressing somatic symptoms, and most would seem to satisfy DSM-5 “B” criterion because symptom impact is life-disturbing or associated with substantial impairment of function and quality of life. But the “B” designation requires special knowledge that symptoms are “disproportionate” or “excessive,” something that is uncertain and controversial. The reliability and validity of DSM-5 criteria in this population is likely to be low.

 

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