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

Advertisements

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

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

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

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

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

 

Work Groups

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

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

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

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

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

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

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

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

 

Differences between ICD-10 and ICD-11

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

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

 

Multiple parents and multisystem diseases

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

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

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

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

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

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

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

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

 

The Content Model

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

 

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

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

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

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

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

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

 

How can stakeholders participate?

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

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

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

Registered stakeholders are permitted to:

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

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

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

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

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

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

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

 

Where to view the Beta drafting platform

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

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

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

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

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

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

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

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

 

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

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

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

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

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

iCAT editing platform 3

 

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

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

 

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

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

 

References for Part 1

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

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

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

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

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

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

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

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

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

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

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

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

Post #313 Shortlink: http://wp.me/pKrrB-3YR

+++

Screenshot: ICD-11 Beta drafting platform, public version, July 31, 2014; Chapter 06 Mental and behavioural disorders: Bodily distress disorder.

+++
BDD310714

Joint Linerarization for Mortality and Morbidity Statistics view selected; “show availability in main linearizations” view selected. Categories designated with three coloured key hover text: “In Mortality and Morbidity, Primary Care High Resource, Primary Care Low Resource. Categories designated with single blue key hover text: “In Mortality and Morbidity.”

+++
Summary of responses from Dr Geoffrey Reed, WHO

On July 23, I submitted an analysis and four questions via the ICD-11 Beta drafting platform for the attention of the Managing Editors for Topic Advisory Group (TAG) Mental Health, the advisory group that is revising ICD-10’s Chapter V.

A copy has been posted in Dx Revision Watch Post #311: Questions raised on ICD-11 Beta draft re: Bodily distress disorder http://wp.me/pKrrB-3Yh

Comments and suggestions submitted by registered users of the ICD-11 Beta drafting platform are screened and forwarded to the appropriate TAG Managing Editors for review.

I also sent a copy of my comments to Dr Geoffrey Reed. Dr Reed is Senior Project Officer overseeing the revision of the ICD Mental and behavioural disorders chapter.

On July 24, I received a response from Dr Reed, via email.

Dr Reed’s responses do not address all the points I had raised via the Beta platform and in my covering email. I am providing a summary of selected of Dr Reed’s responses, below.

I had also drawn Dr Reed’s attention to the absence, since early 2013, of the three G93.3 terms from the public version of the Beta draft and collective concerns for ICD Revision’s failure, to date, to respond to multiple requests to provide an explanation for the continued absence of these terms from the Beta draft and to clarify ICD Revision’s intentions and proposals for the classification of these three ICD-10 terms within ICD-11 [i.e. chapter location(s), parent code(s), hierarchies, Definitions, Synonyms, Inclusion terms etc.].

+++
Dr Reed provided the following information on July 24:

The placement of ME and related conditions within the broader ICD-11 classification is still unresolved.

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 ME and related conditions be clearly identified as NOT being part of this section of the classification could be made absolutely clear through the use of exclusion terms.

However, Dr Reed will be unable to request that exclusion terms be added to relevant Mental and behavioural disorders categories (e.g., Bodily Distress Disorder) until the conditions that are being excluded exist in the classification. At such time, he would be happy to request exclusion terms.

ICD Revision is currently involved in testing the proposals of the ICD-11 Primary Care Consultation Group* in primary care settings around the world, in part to compare how they work with the proposals of the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders**.

Whether the primary care proposal ends up capturing specific groups of patients in primary care who are likely to have underlying medical conditions will certainly be one of the issues for examination and further discussion. Study data would be used as a basis for modifying proposals.

That he considers my analysis is accurate.

That it is not WHO policy to make research protocols for field trial studies that are planned or currently being implemented publicly available for comment.

Details of the study methodology at the time the data are published are expected to be provided, in order that others may examine and critique the methodology, their interpretation of results and their subsequent decisions based on the studies.

Further modifications of the proposals will be based on data evaluation, and justifications made available.

In due course, ICD Revision will make more detailed diagnostic guidelines for all Mental and behavioural disorders available for review and comment before they are finalized, but ICD Revision is not yet ready to do that.

Dr Reed will notify me when that occurs, but anticipates this will be before the end of the year and considers there is plenty of time for review as the approval of ICD-11 is now currently planned for May, 2017.

Dr Reed’s 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, and is therefore unable to provide any information related to how these conditions will be classified in other chapters***.

He is unable to comment about the management of correspondence by other TAG groups**** and signposts to another member of WHO staff [a senior classification expert who had been copied into the joint organizations’ letter to WHO/ICD Revision, in March].

+++
Footnotes:

* Back in 2012, the ICD-11 Primary Care Consultation Group (the PCCG) were proposing a disorder construct that presented a modified version of the Fink et al (2010) Bodily Distress Syndrome (BDS) construct which, at that point, the Primary Care group were proposing to call, “Bodily stress syndrome (BSS).”

The PCCG hasn’t published a progress report since 2012 and the group’s current proposals are not available for scrutiny. If a modified version of BDS is currently being proposed by the PCCG, it isn’t known what changes have been made to the group’s proposals since the Lam et al paper was published in 2012, a paper which is now in the public domain [1].

An editorial co-authored by Prof David Goldberg, in June 2013, implied that Prof Goldberg, at least, was advancing that BDS should be progressed to ICD-11 field testing. It is unclear from Dr Reed’s responses to what extent the PCCG’s most recent proposals correspond to the disorder descriptions and criteria for Fink et al’s, already operationalized, BDS, or whether the group has retained the “BSS” disorder name for the purposes of the field tests and a modified construct/criteria set.

+++
** In 2012, the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (the S3DWG) were proposing an alternative and divergent disorder construct that had good concordance with DSM-5’s Somatic symptom disorder, and poor concordance with Fink et al’s BDS [2].

Perversely, the S3DWG were proposing to call their disorder construct, “Bodily distress disorder (BDD)” – a term already used outside ICD Revision, interchangeably, with Bodily Distress Syndrome [3].

It is the S3DWG’s BDD disorder construct that has been entered into the ICD-11 Beta drafting platform.

The Beta draft entry for BDD has recently had characterizations inserted for three BDD severity specifiers: BDD, Mild; BDD, Moderate; BDD, Severe. This post (which was written before I received responses from Dr Reed) sets out these recent additions to the draft in the context of the two divergent sets of proposals: Definitions for three severities of Bodily distress disorder now inserted in ICD-11 Beta draft, July 19, 2014 http://wp.me/pKrrB-3X9

+++
*** This February 8, 2014 post: http://wp.me/pKrrB-3IX tracks the history of the progression of the three ICD-10 G93.3 categories, PVFS, (B)ME and CFS within the ICD-11 drafting platform, from May 2010 to early 2013.

Under the subheading “So why have these three ICD-10 terms disappeared and why is ICD Revision reluctant to respond?” I have suggested a number of potential reasons for the current absence of these three terms from the Beta draft.

+++
**** On March 17, a joint letter signed by Sonya Chowdhury, CEO, Action for M.E., Annette Brooke MP, Chair, All Party Parliamentary Group on M.E., The Countess of Mar, Chair, Forward M.E. and Dr Charles Shepherd, ME Association, was sent to key Topic Advisory Group for Neurology members and copied to WHO’s Dr Margaret Chan, Dr Geoffrey Reed and Dr Robert Jakob.

The letter had requested, inter alia, clarification for the absence of the three ICD-10 G93.3 terms, Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome from the public version of the ICD-11 Beta drafting platform.

Prior to early 2013, in the public version of the Beta draft, Chronic Fatigue Syndrome had been listed in the Beta Foundation Component as an ICD Title entity under the Diseases of the nervous system chapter, with Benign Myalgic encephalomyelitis specified as an Inclusion term to Title term CFS, and Postviral fatigue syndrome listed under Synonyms to Title term, CFS.

The joint letter can be read here:

http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/get-informed/who-icd-11-letter-17-3-14-sc.pdf

At the July 1 meeting of the APPG on M.E. it was agreed that in the absence of a response, Annette Brooke MP (Chair) would follow up the correspondence. Minuted here (under 3 Matters arising; d) ICD-11):

http://www.meassociation.org.uk/2014/07/minutes-of-the-appg-on-me-meeting-and-the-agm-held-on-1-july-2014/

I have advised Sonya Chowdhury, Dr Charles Shepherd, Neil Riley and Jane Colby of Dr Reed’s responses and suggested that Annette Brooke MP is updated.

+++
Forthcoming Symposium:

In September, Professor Oye Gureje, who chairs the 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 for mental and behavioural disorders, at the World Psychiatric Association XVI World Congress, in Madrid, Spain, 14–18 September 2014.

+++
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. 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 Dec;24(6):556-67. http://www.ncbi.nlm.nih.gov/pubmed/23244611 [Full text behind paywall]

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

+++
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.

Questions raised on ICD-11 Beta draft re: Bodily distress disorder

Post #311 Shortlink: http://wp.me/pKrrB-3Yh

+++

Screenshot: ICD-11 Beta drafting platform, public version, July 31, 2014; Chapter 06 Mental and behavioural disorders: Bodily distress disorder.

+++
BDD310714

 
Joint Linerarization for Mortality and Morbidity Statistics view selected; “show availability in main linearizations” view selected. Categories designated with three coloured key hover text: “In Mortality and Morbidity, Primary Care High Resource, Primary Care Low Resource. Categories designated with single blue key hover text: “In Mortality and Morbidity.”

+++

Yesterday, I left the following comments and questions for TAG Mental Health Managing Editors via the ICD-11 Beta drafting platform.

In order to read the comment in situ you will need to be registered with the Beta drafting platform, logged in, then click on the grey and orange quote icon at the end of the category Title.

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1121638993

Bodily distress disorder, severe

Comments on title

Suzy Chapman 2014-Jul-23 – 14:01 UTC

Definitions for three uniquely coded severities for Bodily distress disorder: Mild; Moderate; Severe, have recently been inserted into the Beta draft.

The Definition for Bodily distress disorder (BDD) and its three severity characterizations appears to be based on the BDD disorder descriptions in the 2012 Creed, Gureje paper: Emerging themes in the revision of the classification of somatoform disorders [1].

As conceptualized by the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG), BDD is proposed to replace the seven ICD-10 Somatoform disorders categories F45.0 to F45.9, and F48.0 Neurasthenia.

The S3DWG’s BDD eliminates the requirement that symptoms be “medically unexplained” as the central defining feature; focuses on identification of positive psychobehavioural responses (excessive preoccupation with bodily 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 symptom(s), resulting in significant impairment of functioning or frequent seeking of reassurance; makes no assumptions about aetiology, and in “[d]oing away with the unreliable assumption of its causality, the diagnosis of BDD does not exclude the presence of (…) a co-occurring physical health condition.”

The S3DWG’s BDD has no requirement for symptom counts, or for symptom patterns or symptom clusters from body or organ systems, which describes a disorder framework with good concordance with DSM-5 Somatic Symptom Disorder (SSD).

According to the Beta draft, BDD’s three severity specifiers are proposed to be characterized on the basis of the extent to which responses to persistent, distressing bodily symptoms are perceived as excessive and on the degree of impairment, not on the basis of number of bodily symptoms and number of body or organ systems affected.

In comparison, psychobehavioural responses do not form part of Fink et al’s (2010) Bodily Distress Syndrome criteria. BDS’s criteria and two severities are based on symptom patterns from body systems (a BDS Modest, single-organ type and a BDS Severe, Multi-organ type).

In 2012, the Lam et al paper [2], set out emerging proposals for the ICD-11 Primary Care Consultation Group’s (PCCG) recommendations for a “Bodily stress syndrome (BSS).”

The PCCG’s proposals described a disorder construct that had good concordance with Fink et al’s Bodily Distress Syndrome, drawing heavily on Fink et al’s criteria set. Although at that point, the PCCG proposed to incorporate some SSD-like psychobehavioural features within their tentative criteria. The PCCG appeared to be proposing a modified version of the Fink et al (2010) BDS construct.

In an Ivbijaro G, Goldberg D (June 2013) editorial [3], the co-authors advance the position that the forthcoming revision of ICD provides an opportunity to include BDS in a revised classification for primary care. According to this June 2013 editorial, the PCCG’s proposal for a modified BDS disorder construct, which it had earlier proposed to call “Bodily stress syndrome (BSS),” appears to have been revised to using the Fink et al “Bodily distress syndrome (BDS)” term.

The editorial implies that BDS (which subsumes the so-called “functional somatic syndromes,” CFS, ME, IBS, Fibromyalgia, chronic pain disorder, MCS and some others, under a single, overarching disorder) was expected to be progressing, imminently, to ICD-11 field trials.

(A revision of the earlier BSS disorder name is not discussed within the editorial; nor whether any modifications to, or deviance from a “pure” BDS construct and criteria were being recommended for the purposes of field testing; nor are the alternative proposals of the S3DWG referenced or discussed; nor are the views of the Revision Steering Group on either set of proposals discussed.)

According to Lam et al (2012) and Ivbijaro and Goldberg (June 2013), the model proposed is that of “autonomic over-arousal,” which the authors consider may be responsible for most or all of the somatic symptoms that are experienced.

Again, compare with the S3DWG’s BDD construct, which makes no assumptions about aetiology and does not exclude the presence of a co-occurring physical health condition, whereas, for both Lam et al’s 2012 BSS and for Fink et al’s BDS, “If the symptoms are better explained by another disease, they cannot be labelled BDS.”

Potential for confusion between divergent disorder constructs:

The term “Bodily distress disorder” and the term “Bodily distress syndrome” (Fink et al, 2010), which is already operationalized in Denmark in research and clinical settings, are often seen being used interchangeably in the literature. For example, in this very recent editorial by Rief and Isaac [4]. Also in papers by Fink and others from 2007 onwards [5].

However, the S3DWG’s defining of a “Bodily distress disorder” construct has stronger conceptual alignment and criteria congruency with DSM-5’s SSD and poor conceptual and criteria congruency with Fink et al’s BDS. That SSD and BDS are very different concepts is acknowledged by Fink, Creed and Henningsen [6] [7].

Although the 2013 Ivbijaro and Goldberg editorial implies that Fink et al’s BDS construct was going forward to ICD-11 field testing, it is the S3DWG’s Bodily distress disorder name and construct that has been entered into the Beta draft – the construct that has stronger conceptual alignment with DSM-5’s SSD.

So the current proposals and intentions for field testing a potential replacement for the SDs remain unclear. This is severely hampering professional and consumer stakeholder scrutiny, discourse and input.

Four questions for TAG Mental Health Managing Editors:

1. Have the S3DWG sub working group, the PCCG working group and the Revision Steering Group reached consensus over a potential replacement framework and disorder construct for ICD-10’s Somatoform disorders and F48.0 Neurasthenia, and the ICD-10-PHC categories: F45 Unexplained somatic symptoms/medically unexplained symptoms, and F48 Neurasthenia?

2. Which recommendations are being progressed to international field testing and does ICD-11 intend to release the protocol or other information on finalized characteristics, diagnostic guidelines, criteria, inclusions, exclusions, differential diagnoses etc, that are planned to be used for the field tests and which would provide the level of detail lacking in the public version of the Beta drafting platform?

3. 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 the DSM-5 SSD construct, what is the rationale for proposing to name this disorder “Bodily distress disorder”?

4. 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?

References:

1. 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]

2. 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

3. Ivbijaro G, Goldberg D. Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (MUS). Ment Health Fam Med. 2013 Jun;10(2):63-4. Full free text available on 2014/6/1: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822636/pdf/MHFM-10-063.pdf

4. Rief W, Isaac M. The future of somatoform disorders: somatic symptom disorder, bodily distress disorder or functional syndromes? Curr Opin Psychiatry (2014). Full free: http://journals.lww.com/co-psychiatry/Fulltext/2014/09000/The_future_of_somatoform_disorders___somatic.2.aspx

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

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

7. Discussions between Prof Francis Creed and Prof Per Fink during Research Clinic for Functional Disorders Symposium presentations, Aarhus University Hospital, May 15, 2014, noted that Fink et al BDS and DSM-5 SSD are “very different concepts.”

+++

September symposium presentation on BDD:

In September, Professor Oye Gureje (who chairs the 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 for mental and behavioural disorders, at the World Psychiatric Association XVI World Congress in Madrid, Spain, 14–18 September 2014.

Unfortunately, I cannot attend this September symposia but would be pleased to hear from anyone who may be planning to attend.

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.

+++
Further reading:

Dx Revision Watch Post: Definitions for three severities of “Bodily distress disorder” now inserted in ICD-11 Beta draft, July 19, 2014 http://wp.me/pKrrB-3X9

Dx Revision Watch Post: Editorial: Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (Goldberg and ICD-11-PHC), June 3, 2014: http://wp.me/pKrrB-3Uh

Definitions for three severities of “Bodily distress disorder” now inserted in ICD-11 Beta draft

Post #310 Shortlink: http://wp.me/pKrrB-3X9

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.

This report updates on recent additions to the listing for Bodily distress disorder in the public version of the ICD-11 Beta draft.

This is an edited version of the report published on July 19.

+++
Bodily distress disorder (BDD) is a new, single diagnostic category that has been proposed for ICD-11. It is intended to subsume the seven ICD-10 Somatoform disorders categories F45.0 – F45.9, and F48.0 Neurasthenia.

Bodily distress disorder (BDD) is the term that has been entered into the Beta drafting platform since February 2012.

It is the term and disorder construct that has been proposed by the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG), which is chaired by Professor Oye Gureje [1].

Note: the term Bodily stress syndrome (BSS) (Lam et al, 2012) is an alternative disorder term and diagnostic construct that has been proposed by the ICD-11 Primary Care Consultation Group (PCCG), which is chaired by Professor Sir David Goldberg [2].

The disorder term and construct Bodily distress syndrome (BDS) has also been advanced for ICD-11 in a June 2013 editorial by Ivbijaro G and Goldberg D [3].

Neither of the terms Bodily stress syndrome (BSS) or Bodily distress syndrome (BDS) has been entered into the ICD-11 Beta draft.

+++
ICD-11 Beta drafting platform (public version):

A Definition for category Bodily distress disorder was inserted into the Beta draft in late January 2014.

At that point, no definitions or characterizations for any of the uniquely coded BDD severity specifiers (currently, BDD, mild; BDD, moderate; BDD, severe) had been inserted.

+++
How is BDD being defined for the purposes of ICD-11?

The psychological and behavioural features that characterize Bodily distress disorder, as currently defined in the Beta draft, are drawn from the disorder conceptualizations in the 2012 Creed, Gureje paper on emerging proposals for the revision of the classification of somatoform disorders [1].

This paper sits behind a paywall but I have had a copy since it was first published.

The paper describes a disorder model that has poor concordance with Fink et al’s Bodily Distress Syndrome construct.

The 2012 Creed, Gureje paper defines BDD as:

“a much simplified set of criteria”;

eliminates the requirement that symptoms be “medically unexplained” as the central defining feature;

focuses on identification of positive psychobehavioural responses (excessive preoccupation with bodily 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 symptom(s), resulting in significant impairment of functioning or frequent seeking of reassurance;

makes no assumptions about aetiology and in “[d]oing away with the unreliable assumption of its causality the diagnosis of BDD does not exclude the presence of (…) a co-occurring physical health condition”;

has no requirement for symptom counts, or for symptom patterns or symptom clusters from body or organ systems

– which describes a disorder framework into which DSM-5′s “Somatic Symptom Disorder (SSD)” could potentially be integrated, facilitating harmonization between a replacement for the ICD-10 Somatoform disorders and DSM-5’s new SSD.

+++
Whereas, Fink et al’s 2010 Bodily Distress Syndrome criteria are based on impairment and symptom patterns from body systems. Positive psychobehavioural features do not form part of the Fink et al criteria [4–6].

For ICD-11’s BDD, patients may be preoccupied with any bodily symptoms and the presence of a co-occurring physical health condition is not an exclusion.

But for Fink et al’s BDS, “If the symptoms are better explained by another disease, they cannot be labelled BDS.”

BDD’s three severity specifiers are proposed to be characterized on the basis of the extent to which responses to persistent, distressing symptoms are perceived as excessive and on degree of impairment, not on the basis of the number of bodily symptoms and the number of body or organ systems that are affected by the disorder.

In contrast, BDS’s two severities are based on symptom patterns (a BDS Modest, single-organ type and a BDS Severe, Multi-organ type).

Both BDD and BDS are intended to subsume the Somatoform disorders and Neurasthenia.

But BDS seeks to arrogate the so-called “functional somatic syndromes,” CFS, ME, IBS, Fibromyalgia, chronic pain disorder, MCS and some others, and subsume them under a single, overarching BDS diagnosis [6].

So although the BDD and BDS disorder names sound very similar (and the terms are sometimes seen used interchangeably), as defined in the 2012 Creed, Gureje paper and as defined by the recently inserted Beta draft Definitions, ICD-11’s BDD and Fink et al’s BDS present divergent constructs*.

It is the ICD-11 Primary Care Consultation Group‘s 2012 proposals for a “Bodily stress disorder” [2] that had stronger conceptual alignment and criteria congruency with Fink et al’s BDS.

*Discussions between Profs Creed and Fink during the Research Clinic for Functional Disorders Symposium presentations, Aarhus University Hospital, May 15, 2014, noted that Fink et al’s BDS and DSM-5’s SSD are “very different concepts.” 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.

+++
ICD-11 BDD, mild; moderate and severe specifiers, now defined:

In the last few days, Definitions for the three uniquely coded Severity specifiers:

6B40 Bodily distress disorder, mild

6B41 Bodily distress disorder, moderate

6B42 Bodily distress disorder, severe

have been inserted into the Beta draft.

+++
The Definition for the Title term Bodily distress disorder remains the same as previously reported:

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/767044268

http://apps.who.int/classifications/icd11/browse/l-m/en#/http://id.who.int/icd/entity/767044268

Chapter 06 Mental and behavioural disorders

Bodily distress disorder [In Mortality and Morbidity, Primary Care High Resource, Primary Care Low Resource Linearizations]

Foundation Id: http://id.who.int/icd/entity/767044268

Parent(s)

Mental and behavioural disorders            ICD-10 : F45

Definition

Bodily distress disorder is characterized by high levels of preoccupation regarding bodily symptoms, unusually frequent or persistent medical help-seeking, and avoidance of normal activities for fear of damaging the body. These features are sufficiently persistent and distressing to lead to impairment in personal, family, social, educational, occupational or other important areas of functioning. The most common symptoms include pain (including musculoskeletal and chest pains, backache, headaches), fatigue, gastrointestinal symptoms, and respiratory symptoms, although patients may be preoccupied with any bodily symptoms. Bodily distress disorder most commonly involves multiple bodily symptoms, though some cases involve a single very bothersome symptom (usually pain or fatigue).

Synonyms

somatoform disorders
Somatization disorder

Exclusions [Ed: with the exception of Hypochondriasis, Exclusions are imported from ICD-10 F45 Somatoform disorders Exclusions.]

lisping
lalling
psychological or behavioural factors associated with disorders or diseases classified elsewhere
nail-biting
sexual dysfunction, not caused by organic disorder or disease
thumb-sucking
tic disorders (in childhood and adolescence)
Tourette syndrome
trichotillomania
dissociative disorders
hair-plucking
Hypochondriasis

+++
This is the recently added Definition for 6B40 Bodily distress disorder, mild:

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1472866636

http://apps.who.int/classifications/icd11/browse/l-m/en#/http://id.who.int/icd/entity/1472866636

6B40 Bodily distress disorder, mild [In Mortality and Morbidity Linearizations]

Foundation Id: http://id.who.int/icd/entity/1472866636

Parent(s)

Definition 

Bodily distress disorder, mild is a form of Bodily distress disorder in which there is excessive attention to bothersome symptoms and their consequences, which may result in frequent medical visits. The person is not preoccupied with the symptoms (e.g., spends less than an hour per day focusing on them). Although the individual expresses distress about the symptoms and they may have some impact on his or her life (e.g., strain in relationships, less effective academic or occupational functioning, abandonment of specific leisure activities) there is no substantial impairment in the person’s personal, family, social, educational, occupational, or other important areas of functioning.

All Index Terms

  • Bodily distress disorder, mild

+++
Here’s the Definition for 6B41 Bodily distress disorder, moderate:

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1967782703

http://apps.who.int/classifications/icd11/browse/l-m/en#/http://id.who.int/icd/entity/1967782703

6B41 Bodily distress disorder, moderate [In Mortality and Morbidity Linearizations]

Foundation Id : http://id.who.int/icd/entity/1967782703

Parent(s)

Definition 

Bodily distress disorder, moderate is a form of bodily distress disorder in which there is persistent preoccupation with bothersome symptoms and their consequences (e.g., spends more than an hour a day thinking about them), typically associated with frequent medical visits such that the person devotes much of his or her energy to focusing on the symptoms and their consequences, with consequent moderate impairment in personal, family, social, educational, occupational, or other important areas of functioning (e.g., relationship conflict, performance problems at work, abandonment of a range of social and leisure activities).

All Index Terms

  • Bodily distress disorder, moderate

+++
  And here’s the Definition for 6B42 Bodily distress disorder, severe:

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1121638993

http://apps.who.int/classifications/icd11/browse/l-m/en#/http://id.who.int/icd/entity/1121638993

6B42 Bodily distress disorder, severe [In Mortality and Morbidity Linearizations]

Foundation Id: http://id.who.int/icd/entity/1121638993

Parent(s)

Definition

Bodily distress disorder, severe is a form of bodily distress disorder in which there is pervasive and persistent preoccupation to the extent that the symptoms may become the focal point of the person’s life, typically requiring extensive interactions with the health care system. Preoccupation with the experienced symptoms and their consequences causes serious impairment in personal, family, social, educational, occupational, or other important areas of functioning (e.g., unable to work, alienation of friends and family, abandonment of nearly all social and leisure activities). The person’s interests may become so narrow so as to focus almost exclusively on his or her bodily symptoms and their negative consequences.

All Index Terms

  • Bodily distress disorder, severe

+++
What will ICD-11 be field testing?

Field testing of a potential replacement for the existing ICD-10 Somatoform disorders framework is expected to be conducted over the next year or two. Disorders that survive the ICD-11 PHC field tests will require an equivalent disorder in the main ICD-11 classification.

So whatever replaces the existing ICD-10 PHC categories, F45 Unexplained somatic symptoms/medically unexplained symptoms and F48 Neurasthenia, (which is also proposed to be eliminated for the ICD-11 primary care version), will need an equivalent disorder in the main classification.

International field tests across a range of primary care settings had been anticipated to start from June, last year, but there were reported delays. It isn’t known whether consensus has been reached yet over disorder construct and diagnostic criteria for use in the field tests, or whether field testing is now underway.

I cannot confirm whether ICD-11 intends to release a protocol into the public domain for whatever construct it plans to field test, or may already be field testing.

Currently, there is no publicly available protocol or other information on 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.

+++

So which construct does ICD-11 Revision Steering Group favour?

Although BDD (and now its three severities) have been defined within the Beta draft, much remains unclear for proposals for the revision of this section of ICD-11 Mental and behavioural disorders.

The ICD-11 Primary Care Consultation Group’s alternative 2012 Bodily stress syndrome (BSS) construct – a near clone of Fink et al’s BDS criteria but with some SSD-like psychobehavioural responses tacked on – isn’t the construct that is entered and defined within the Beta draft.

In June 2013, Prof Gabriel Ivbijaro (not, himself, a member of the PCCG) and Prof Sir David Goldberg (who chairs the PCCG) published a joint editorial in Mental Health in Family Medicine, the official journal of The World Organization of Family Doctors (Wonca) Working Party on Mental Health, for which Prof Ivbijaro is Editor in Chief.

The authors advance the position that the forthcoming revision of ICD “provides an opportunity to include BDS in a revised classification for primary care” and imply that BDS (at least at that point) was progressing, imminently, to ICD-11 field trials.

This brief editorial was embargoed from June 2013 to June 2014 and I was unable to obtain a copy until last month, but you can read it now for free and in full here: Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (MUS).

Note, firstly, that the editorial does not declare Professor Goldberg’s interest as chair of the ICD-11 Primary Care Consultation Group.

It does not clarify whether the views and opinions expressed within the editorial represent the views of the authors or are 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 (RSG), or of any committees on which co-author, Prof Ivbijaro, sits or of any bodies to which Prof Ivbijaro is affiliated.

No publicly posted progress reports are being issued by ICD-11 or by either of the two groups making recommendations for the revision of this section of ICD and I do not have a second source that confirms the status of proposals as they stood in June 2013.

But taking the editorial at face value, it would appear that the PCCG had revised its earlier proposals for a BSS construct (that drew heavily on Fink et al’s BDS criteria but had included the requirement for some psychobehavioural responses) and were now recommending that the Fink et al BDS construct and criteria should progress for ICD-11 PHC field testing and evaluation, that is, using the same disorder name and (presumably) the same criteria set that is already operationalized in research and clinical settings, in Denmark.

(The rationale for the apparent revision of the earlier BSS disorder name is not discussed within the editorial; nor whether any modifications to, or deviance from a “pure” BDS construct and criteria were being recommended for the purposes of ICD-11 field testing.)

The editorial doesn’t clarify whether the PCCG, the S3DWG and the ICD-11 Revision Steering Group (RSG) had reached consensus – it does not mention the alternative proposals of the S3DWG, at all, or discuss what is entered into the Beta draft, or discuss the views and preferences of the Revision Steering Group for any of recommendations made by the two advisory groups, to date.

It is unclear whether a “pure” BDS construct (as opposed to the PCCG’s earlier BSS modification) had already gained Revision Steering Group approval for progressing to field testing, at the point the editorial was drafted, or whether Prof Goldberg was using this Wonca house journal as a platform on which to promote his own opinions and expectations, in a purely personal capacity.

Crucially, it doesn’t explain why, if a BDS-like construct were anticipated to be progressed to field trials in the second half of 2013, it is the S3DWG’s Bodily distress disorder diagnostic construct that has been listed and defined in the Beta draft for Foundation, Mortality and Morbidity, Primary Care High Resource, Primary Care Low Resource linearizations – not the PCCG’s 2012 BSS modification, or the “pure” BDS that Prof Goldberg evidently champions.

As a source of information on the current status of proposals for the revision of the Somatoform disorders this June 2013 editorial is problematic (and now also over a year out of date).

I suspect the politics between the 12 member PCCG (which includes Marianne Rosendal*), the 17 member S3DWG and the ICD-11 Revision Steering Group are intensely fraught given Professor Goldberg’s agenda for the revision of the Somatoform disorders, since fitting BDS into ICD-11 hasn’t proved to be the shoo in that Fink, Rosendal and colleagues had hoped for**, and given that BDS cannot be harmonized with DSM-5’s SSD, as they are conceptually divergent.

*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. 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.
**Presentation, Professor Per Fink, March 19, 2014 Danish parliamentary hearing on Functional Disorders. Prof Fink 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.

+++
Requests for clarification repeatedly stonewalled:

ICD Revision has been asked several times, via the Beta drafting platform, to clarify current proposals for the framework and disorder construct for a replacement for the ICD-10 Somatoform disorders and to clarify which construct it intends to take forward to field testing. 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 response has been forthcoming.

Lack of publicly posted progress reports by both working groups, confusion over the content of the Beta draft and ICD Revision’s failure to respond to queries from stakeholders is hampering stakeholder scrutiny, discourse and input. It is time clinicians, researchers, allied professionals and advocacy organizations demanded transparency from ICD Revision around current proposals and field trial intentions.

+++
September symposium presentation on BDD:

In September, Professor Oye Gureje (who chairs the 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 for mental and behavioural disorders, at the World Psychiatric Association XVI World Congress, in Madrid, Spain, 14–18 September 2014 [7].

Unfortunately, I cannot attend this symposium presentation but would be pleased to hear from anyone who may be planning to attend.

+++
References:

1. 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]

2. 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

3. Ivbijaro G, Goldberg D. Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (MUS). Ment Health Fam Med. 2013 Jun;10(2):63-4. Full free text available on 2014/6/1: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3822636/pdf/MHFM-10-063.pdf

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

5. 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.

6. Fink et al Proposed new BDS diagnostic classification

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

+++
Further reading:

Dx Revision Watch Post: Editorial: Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (Goldberg and ICD-11-PHC), June 3, 2014: http://wp.me/pKrrB-3Uh

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.

++
ICD-11 PHC

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

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

A revised edition, ICD-11 PHC, is 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 require a corresponding 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.

++
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.

++
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.

++
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.
+++

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.

++
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.

++
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.

++
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.

++
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].

++
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.

++
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.

++
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”

++
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].

++
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.

++
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.

++
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.

++
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.

 

%d bloggers like this: