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

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

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

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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.”

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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.].

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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].

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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.

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** 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

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*** 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.

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**** 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.

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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.

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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.

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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.

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