Proposals and evidence for the ICD-11 classification of Bodily Distress Disorders: WHO ICD-11 Symposium IV, WPA XVI World Congress, Madrid

Post #299 Shortlink: http://wp.me/pKrrB-3Oe

Update at March 16, 2014: I am advised that Justice For Karina Hansen on Facebook has added a note of correction to its Facebook post.

BDD 240214

Image source: Chapter 06: Bodily distress disorder > Somatization disorder, ICD-11 Beta drafting platform at March 17, 2014

I am still seeing considerable confusion, misunderstanding and misreporting around what can and what cannot be determined from the public version of the ICD-11 Beta drafting platform on emerging proposals for revision of ICD-10’s Somatoform disorders.

Two recent examples: a media report (since pulled) and an incorrect statement posted by an admin for the Justice For Karina Hansen Facebook page:

“We are sad to share that bodily distress syndrome has made it one step closer to being part of the ICD. It appeared january 29th on ICD-11 Beta Drafting Platform…”

No. It didn’t.

The term Bodily distress syndrome does not appear in the public version of the ICD-11 Beta drafting platform.

The term entered into the Beta draft is Bodily distress disorder.

Bodily distress disorder did not appear in the Beta draft on January 29. It was entered into the draft, two years ago, in February 2012.

January 29 is the date on which I reported that an ICD-11 “Short Definition” had recently been inserted for the (long-standing) entry for a proposed Bodily distress disorder category.

If you have already written about proposals for the revision of the Somatoform disorders in the context of the ICD-11 Beta drafting platform or if you are planning to write, please read this post.

If writing about complex classificatory revision processes, I suggest you first familiarize yourself with how the several ICD-11 Beta drafting platform linearizations function and interrelate; that you inform yourself about the proposals of both ICD-11 working groups charged with making recommendations for potential revision of the ICD-10 Somatoform disorders, including obtaining and scrutinizing key journal papers, reports or presentations on emerging proposals published by members of both working groups; and that for comparison, you have an understanding of the existing F45 Somatoform disorders framework and the disorder descriptions and criteria for categories located within this section of ICD-10, in order that you can provide evidenced based, accurate and up to date information and analysis, within the limitations of what information is public domain.

Reiteration of misinformation and inaccurate reporting on blogs, websites and social media platforms helps no-one. It delegitimizes patient and carer concerns; it undermines the work of advocates committed to providing accurate, referenced and timely information; it panics patients and provokes knee jerk “activism” and “slacktivism.”

And if you are shrugging and thinking Ho, hum, the (undefined) term, Bodily distress disorder and Fink et al’s (operationalized) Bodily Distress Syndrome are sometimes used interchangeably outside of ICD-11, so… ICD-11’s proposed flavour of BDD must mean that a similar disorder model to Fink’s BDS is intended in the Beta draft, read on…

Please note that it is not within the scope of this post to review or discuss the implications for retaining the ICD-10 status quo for ICD-11, or for adopting SSD-like or BDS-like constructs (or any variations on all three) – but to set out what can and what cannot safely be determined from the Beta draft and associated literature.

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Key points for this report:

• In September, 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 a series of ICD-11 Symposia at the World Psychiatric Association’s XVI World Congress, in Madrid.

• There are two working groups advising ICD-11 on the revision of ICD-10’s Somatoform disorders

The Primary Care Consultation Group (PCCG);

The ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG).

• In 2012, the PCCG published a paper proposing a new disorder construct to replace ICD-10-PHC’s F45 “Unexplained somatic symptoms/medically unexplained symptoms” which the group proposed to call Bodily stress syndrome (BSS) [1]. 

F48 Neurasthenia was also proposed to be eliminated for the ICD-11-PHC.

• In 2012, the PCCG’s Bodily stress syndrome category was proposed to sit under a new Mental and behavioural disorder grouping called Body distress disorders, under which were grouped three other, unrelated disorders, like so:

Extract: Goldberg DP. Comparison Between ICD and DSM Diagnostic Systems for Mental Disorders. In: Sorel E, (Ed.) 21st Century Global Mental Health. Jones & Bartlett Learning, 2012: 37-53 [Free PDF, Sample Chapter Two] [2]

Page 51, Table 2.5 The 28 Disorders Proposed for ICD11-PHC (the abridged Primary Care version of ICD-11)

Body distress disorders

15 Bodily stress syndrome [Replaces F45 Unexplained somatic symptoms/medically unexplained symptoms]
16 Acute stress reaction
17 Dissociative disorder
18 Self-harm

[F48 Neurasthenia proposed to be eliminated for ICD11-PHC]

So the PCCG group were proposing the use of a new term, Body [sic] distress disorders, as a disorder group name for a number of unrelated ICD-11-PHC primary care disorders, whilst proposing the term Bodily stress syndrome as a new ICD-11-PHC disorder category listed under that group.

[Leaving aside the issue of the current lack of evidence for the validity, reliability and utility of the BSS construct, this presents providers, payers, coders and patients with potentially confusing terminology. Given there is already an operationalized definition and criteria for Bodily Distress Syndrome, WHO classification experts should have qualms about the potential for confusion between disorder group names and disorder category names, and between proposed disorder names that sound similar to, but which may lack conceptual congruency with similarly named disorders for which definitions and criteria have already been published and which are already in limited use in research and clinical settings.]

• In 2012, the PCCG’s tentative new BSS disorder drew heavily on Fink et al’s Bodily Distress Syndrome’s (BDS) construct and criteria. Based on physical symptom clusters or patterns from various body systems and (theoretically) on the autonomic arousal or “over-arousal” illness model.

Though not explicit, BSS appeared to have the capacity for capturing the so-called functional somatic syndromes; and in common with BDS, if the symptoms “were better accounted for by a known physical disease this is not BSS.”

But the tentative BSS criteria also featured some DSM-5 SSD-like psychobehavioural characteristics, which do not form part of Fink et al’s BDS criteria. There were other, minor criteria discrepancies between BSS and BDS.

• In 2012, the second working group, the S3DWG, also published a paper presenting a new disorder construct which they proposed to call Bodily distress disorder (BDD) [3]. Again, a similar term to one already in use.

The S3DWG group proposed to subsume all of the ICD-10 Somatoform disorders categories of F45.0 – F45.9, plus F48.0 Neurasthenia, under a new, single BDD disorder category, with a number of severity specifiers (initially, Mild, Moderate and Severe).

• But the S3DWG’s emerging BDD construct was quite different to the PCCG group’s BSS. It was characterized by a simplified criteria set based on excessive preoccupation and psychobehavioural responses to single or multiple, non specific bodily symptoms. The BDD construct shared characteristics with DSM-5’s Somatic symptom disorder (SSD) – not with Fink et al’s BDS.

• In common with DSM-5’s SSD, the BDD diagnosis eliminated the “unreliable assumption of causality” and did not exclude the presence of a co-occurring physical health condition. BDD, as described in the 2012 Gureje, Creed paper, and Fink et al’s BDS are divergent constructs.

• So by late 2012, there were two sets of recommendations – BSS, drawing heavily on Fink’s BDS model, but with a nod towards DSM-5’s SSD, and BDD – with notable similarity to DSM-5’s SSD.

• In early 2012, the disorder name entered into the ICD-11 Beta drafting platform was Bodily distress disorder, (not Bodily stress syndrome or Bodily Distress Syndrome). No Definition for BDD was added at the time.

• In early 2014, a Definition for Bodily distress disorder was inserted into the Beta drafting platform. The Definition wording was drawn from the Gureje, Creed (S3DWG) 2012 BDD paper, which had described an SSD-like disorder construct.

• There is currently insufficient evidence in the Beta drafting platform to assert that, in the context of ICD-11 Beta drafting platform, BDD is being defined as a BDS-like construct. The defining BDD characteristics: 

high levels of preoccupation regarding bodily symptoms;
unusually frequent or persistent medical help-seeking;
avoidance of normal activities for fear of damaging the body;

are psychological and behavioural responses. Psychological and behavioural responses are not required for Fink et al’s BDS and these characteristics have greater congruency with DSM-5 SSD’s “B type”criteria. There is no evident requirement for symptom patterns or clusters from one or more body systems, as required to meet BDS criteria; examples of BDD symptoms are non specific and patients may be “preoccupied with any bodily symptoms.”

From the limited content displaying in the Beta draft, it simply isn’t possible to determine that BDD, in the context of ICD-11 Beta draft usage, is being defined as a Fink et al BDS-like disorder construct.

An additional layer of complexity: recently, the BDD severity specifier “Severe bodily distress disorder” has been removed from the draft and ICD-10’s Somatization disorder reinserted. Neurasthenia, previously proposed by both groups to be eliminated or subsumed for ICD-11, has also been inserted back into the Mental and behavioural disorders chapter, which is (currently numbered Chapter 06).

Neurasthenia240214

Image source: Chapter 06: Neurasthenia, ICD-11 Beta drafting platform at March 17, 2014

The Definition assigned to Somatization disorder remains unrevised from legacy text recently imported, unedited, from ICD-10. It is currently unclear how Somatization disorder and Neurasthenia are now intended to integrate within the core ICD-11 and the ICD-11 Primary Care framework, given that a new, single disorder construct had earlier been proposed by both groups to subsume Somatization disorder and all of the ICD-10 Somatoform Disorders categories between F45.0 – F45.9, and to subsume F48.0 Neurasthenia.

No other F45.x categories have been restored to the Beta draft. (There is a reference in the legacy Definition for Somatization disorder to F45.1 Undifferentiated somatoform disorder but this text has yet to be edited from the text as it had stood under ICD-10’s Somatoform disorders framework.) 

• The development of a replacement for the ICD-10 Somatoform Disorders is a work in progress and proposals may go through several iterations over the next two or three years. The two groups may or may not be striving to reach consensus. The construct favoured by ICD-11 Revision Steering Group may or may not be the construct that is put out for initial field testing.

• Without full disorder descriptions, criteria, inclusions, exclusions, differential diagnoses etc, there is currently insufficient content in the Beta drafting platform to determine the precise nature of whatever construct and criteria is currently favoured by ICD-11 Revision Steering Group; or whether the two groups have reached consensus over a new disorder name and concept; or whether and to what extent the groups’ two (divergent) constructs have been revised since publication of their respective 2012 papers.

Possibly the ICD-11 Symposium IV presentation, later this year, in Madrid, may elucidate. If there is a transcript, summary report or presentation slides of Dr Oye Gureje’s presentation to the World Psychiatric Association XVI World Congress in September, I will post presentation materials, when available. There are some additional notes below the WPA XVI World Congress details.

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The World Psychiatric Association’s XVI World Congress of Psychiatry will be held in Madrid, on September 14–18, 2014.

XVI World Congress of Psychiatry website: http://www.wpamadrid2014.com/

There will be a number of Symposia dedicated to the development of ICD-11

Scientific Programme

Topic 10. Diagnostic Systems (Updated)

Proposals Diagnostic Systems

Extracts:

Page 2:

000464 WHO ICD-11 Symposium I: An overview of the World Health Organization’s development of the ICD-11 classification of mental and behavioural disorders

000466: WHO ICD-11 Symposium III: Proposals and Evidence for ICD-11 – Neurodevelopmental Disorders, Disruptive Behaviour

000468: WHO ICD-11 Symposium IV: Proposals and Evidence for ICD-11– Schizophrenia Spectrum and Other Primary Psychotic Disorders, Mood Disorders, Anxiety Disorders, and Common Mental Disorders in Primary Care

[…]

Speaker: Goldberg, David P., King’s College London – UK

Proposals and evidence for the ICD-11 classification of mental and behavioural disorders in primary care (ICD-11 PHC)

000469: WHO ICD-11 Symposium V: Proposals and Evidence for ICD-11 – Obsessive-Compulsive and Related Disorders, Disorders Specifically Associated with Stress, Bodily Distress Disorders, and Dissociative Disorders

[…]

Speaker: Gureje, Oye, University of Idaban – NG

Proposals and evidence for the ICD-11 classification of Bodily Distress Disorders

Notes:

The ICD-11 Primary Care Consultation Group:

The 12 member PCCG leads the development and field testing of the revision of all 28 mental and behavioural disorders proposed for inclusion in the next ICD primary care classification (ICD-11-PHC), an abridged version of the core ICD-11 classification. Per Fink’s colleague, Marianne Rosendal, is a member of the PCCG group.

The members of the PCCG are: SWC Chan, AC Dowell, S Fortes, L Gask, D Goldberg (Chair), KS Jacob, M Klinkman (Vice Chair), TP Lam, JK Mbatia, FA Minhas, G Reed, and M Rosendal.

New disorders that survive the primary care field tests must have an equivalent disorder in the main ICD-11 classification.

The PCCG’s 2012 paper on emerging proposals for BSS and international focus group responses to these tentative proposals can be accessed for free here:

http://fampra.oxfordjournals.org/content/30/1/76.long

http://fampra.oxfordjournals.org/content/30/1/76.full.pdf+html

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The ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders:

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

The S3DWG is chaired by Prof Oye Gureje. DSM-5 Somatic Symptom Disorder (SSD) work group member, Prof Francis Creed, is a member of this group. Other than Athula Sumathipala, MD, PhD (UK) and Joan E. Broderick, PhD (Stony Brook University, NY) all other members of this sub working group have yet to be identified. Their names are not listed in the Gureje, Creed 2012 paper [3] and a list of members is not available from the ICD Revision website.

The term entered into the Beta draft is Bodily distress disorder not Bodily stress syndrome or Bodily Distress Syndrome.

Current Definition for Bodily distress disorder, as displaying in the Beta draft at March 16, 2014:

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).

This BDD Definition wording is based – in some places verbatim – on the construct descriptions presented in the Gureje, Creed (S3DWG) “Emerging themes…” paper, published in late 2012 [3]. Unfortunately this journal paper remains behind a paywall but I do have a copy.

Extract, Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012:

“…At the time of preparing this review, a major highlight of the proposals of the S3DWG for the revision of the ICD-10 somatoform disorders is that of subsuming all of the ICD-10 categories of F45.0 – F45.9 and F48.0 under a single category with a new name of ‘bodily distress disorder’ (BDD).

“In the proposal, BDD is defined as ‘A disorder characterized by high levels of preoccupation related to bodily symptoms or fear of having a physical illness with associated distress and impairment. The features include preoccupation with bothersome bodily symptoms and their significance, persistent fears of having or developing a serious illness or unreasonable conviction of having an undetected physical illness, 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 of functioning or frequent seeking of reassurance.'”

This 2012 paper goes on to say that the S3DWG’s emerging proposals specify a much simplified set of criteria for a diagnosis of Bodily distress disorder (BDD) that requires the presence of:

1. High levels of preoccupation with a persistent and bothersome bodily symptom or symptoms; or unreasonable fear, or conviction, of having an undetected physical illness; plus,

2. The bodily symptom(s) or fears about illness are distressing and are associated with impairment of functioning.

And that in doing away with the “unreliable assumption of its causality” the diagnosis of BDD “does not exclude the presence of depression or anxiety, or of a co-occurring physical health condition.”

This is not a BDS model – it’s a disorder framework into which DSM-5’s “Somatic Symptom Disorder” (SSD) could comfortably be integrated, thus smoothing harmonization between ICD-11 and DSM-5.

(If you want to compare the extent to which the BDS construct and criteria diverges from DSM-5’s SSD construct and criteria, see my graphic here.)

For the S3DWG’s emerging proposals for BDD, as presented in late 2012, there was no evident requirement for specific symptom counts, or for BDS-like symptom clusters from one or more body systems. Examples of symptoms are non specific and patients may be “preoccupied with any bodily symptoms.”

As with DSM-5’s SSD, the focus was not on the number of symptoms, or on symptom patterns or clusters from one or more body systems, or whether symptoms were determined as “medically explained” or “medically unexplained” or of undetermined aetiology, but on the perception of “disproportionate” and “maladaptive” responses to, or “excessive” preoccupation with any troublesome chronic bodily symptom(s).

So in 2012, the two groups lacked agreement not only over what to call any new, single disorder replacement for ICD-10’s Somatoform disorders, but also on what disorder construct and criteria should be recommended to ICD Revision.

Given that the wording of the Definition for Bodily distress disorder as entered into the draft, in January, is based on text from the Gureje, Creed 2012 paper, which had described an SSD-like construct, one might argue that the disorder name and Definition currently displaying in the draft potentially better describes an SSD-like construct – not Fink et al’s BDS.

And with the recent reintroduction into the Beta drafting platform of Somatization disorder and Neurasthenia, one might further argue that there is perhaps a recent consideration for a construct that doesn’t veer too far away from the status quo, which could be moulded to accommodate selected of the ICD-10 legacy Somatoform disorders categories, but which removes the requirement for symptoms to be “medically unexplained” in order that SSD might be shoehorned into an ICD-11 framework for “harmonization” with DSM-5.

But at the moment and in the absence of documentary evidence or clarification by WHO/ICD Revision, what cannot safely be said is that in the context of ICD-11 usage, Bodily distress disorder equates with Fink et al’s Bodily Distress Syndrome.

Caveats: The ICD-11 Beta drafting platform is not a static document: as a work in progress over the next two to three years, it is subject to daily edits and revisions, to field test evaluation and to approval by Topic Advisory Group (TAG) Managing Editors, ICD Revision Steering Group and WHO classification experts.

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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. Fam Pract Feb 2013 [Epub ahead of print July 2012].
Abstract: http://www.ncbi.nlm.nih.gov/pubmed/22843638
Full free text: http://fampra.oxfordjournals.org/content/30/1/76.long
PDF: http://fampra.oxfordjournals.org/content/30/1/76.full.pdf+html

2. Goldberg DP. Comparison Between ICD and DSM Diagnostic Systems for Mental Disorders. In: Sorel E, (Ed.) 21st Century Global Mental Health. Jones & Bartlett Learning, 2012: 37-53 [Free PDF, Sample Chapter Two] http://samples.jbpub.com/9781449627874/Chapter2.pdf

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

4. ICD-11 Beta drafting platform public version: Bodily distress disorder: http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f767044268

Update on ICD-11 Beta drafting platform listing for “Bodily distress disorder”

Post #296 Shortlink: http://wp.me/pKrrB-3M2

This post is an update to Post #291, January 29, 2014, titled:

Between a Rock and a Hard Place: ICD-11 Beta draft: Definition added for “Bodily distress disorder”

Caveat: 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 Topic Advisory Group Managing Editors, the ICD Revision Steering Group and WHO classification experts.

Since the release of the initial iCAT drafting platform, in 2010, the Somatoform disorders section of Chapter 05 has undergone numerous iterations.

In Post #291, I reported on the status of the Beta drafting platform at January 29, when it had stood like this:

BDD at 02.02.14

Source: ICD-11 Beta drafting platform, Chapter 05, at January 29, 2014

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There has been a further recent change to this section of the drafting platform and the draft currently stands like this:

http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f767044268

BDD 240214

Source: ICD-11 Beta drafting platform, Chapter 05, at February 24, 2014

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In the Foundation Component, the severity specifier, Severe bodily distress disorder, has now been removed.

ICD-10’s Somatization disorder has been reinserted as a child category under Bodily distress disorder.

The term Bodily distress disorder is cross referenced to ICD-10 F45 Somatoform disorders.

Somatoform disorders is listed under Synonyms to Bodily distress disorder.

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

http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f767044268

“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).”

Note: these psychobehavioural responses that characterize the disorder are based on text in the 2012 Creed and Gureje paper on emerging proposals for Bodily distress disorder [1].

That paper also says that in doing away with the “unreliable assumption of its causality” the diagnosis of BDD does not exclude the presence of a co-occurring physical health condition – which describes a disorder framework into which DSM-5′s “Somatic Symptom Disorder” (SSD) would be capable of integration, allowing harmonization between ICD-11 and DSM-5.

The Exclusions listed under Bodily distress disorder are legacy terms imported from ICD-10’s Somatoform disorders section. Hypochondriasis has also been inserted as an Exclusion to Bodily distress disorder.

If you open the description display pane for child category, Somatization disorder:

http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f967191413

you’ll see that the Definition that has been reinserted is legacy text imported from ICD-10’s F45.0 Somatization disorder.

The Definition includes the text: “Short-lived (less than two years) and less striking symptom patterns should be classified under undifferentiated somatoform disorder (F45.1).”

Note: there is no Undifferentiated somatoform disorder listed in the ICD-11 Beta draft. I cannot confirm whether ICD-11 Revision also intends to reinsert Undifferentiated somatoform disorder to the ICD-11 Beta draft, or whether this represents an oversight on the part of the Beta draft Managing editors to edit the text that has been imported from ICD-10 to accord with ICD-11 proposals.

If you go to the Foundation Component view:

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

and hover over the blue, red, yellow, green button at the top right of the chapter listings, the hover reads

“show/hide availability in main linearizations”.

Click on the button and coloured tags will display at the beginning of each category term which indicate the availability of that term within the various linearizations.

For example, hovering over the colour tags for Bodily distress disorder  indicates that this Foundation Component term is available in “In Mortality and Morbidity, Primary Care High Resource, Primary Care Low Resource” linearizations.

Hovering over the recently re-inserted Somatization disorder indicates that this Foundation Component term is available “In Mortality and Morbidity, Primary Care High Resource, Primary Care Low Resource” linearizations. (On February 18, it was displaying as available only in Foundation, Primary Care High Resource and Primary Care Low Resource.)

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Neurasthenia

A further change – Neurasthenia has also been reinserted into the Beta draft!

Neurasthenia had previously been proposed to be eliminated for ICD-11 or subsumed under Bodily distress disorder along with seven Somatoform disorder categories:

Somatization disorder;
Undifferentiated somatoform disorder;
Somatoform autonomic dysfunction;
Persistent somatoform pain disorder;
Chronic pain disorder with somatic and psychological factors [not in ICD-10 but had been proposed for ICD-11];
Other somatoform disorders;

Somatoform disorder, unspecified

Neurasthenia has also been proposed to be eliminated from the Primary Care version (ICD-11-PHC), according to the 2012 proposals of the Primary Care Consultation Group, but now its back in the draft and listed for Foundation Component, Primary Care High Resource and Primary Care Low Resource linearizations (but not Mortality and Morbidity).

It is currently listed thus:

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1784516726

Neurasthenia240214

The Long Content Model Definition that displays in the disorder description pane is the legacy F48.0 text unmodified from ICD-10.

Fatigue syndrome* is specified as the Inclusion term, as per ICD-10. [If you hover over the asterisk in the draft it displays the hover: “This term is an inclusion term in the linearizations”.]

ICD-10 G93.3 category, postviral fatigue syndrome, remains listed as an Exclusion to Neurasthenia, as it does in ICD-10.

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So what are the implications?

Without clarifications from ICD Revision it cannot be determined from what displays in the public version of the Beta draft what the current intentions are, or how these revised proposals would accommodate the restoration of Somatization disorder and Neurasthenia within the BDD framework (at least as the BDD framework stood in the 2012 Creed and Gureje emerging proposals paper).

All that can safely be said in relation to this section of the draft is:

that the section parent category remains Bodily distress disorder;

that a child category, Somatization disorder, which was previously one of a handful of SDs proposed to be replaced by a single new BDD category, has now been reinserted for the Foundation Component, Mortality and Morbidity, Primary Care High Resource and Primary Care Low Resource linearizations, with its Definition text unmodified from ICD-10.

that currently, the Definition text for Somatization disorder is unmodified from ICD-10 and includes an unexplained reference to F45.1 Undifferentiated somatoform disorder*.

that Severe bodily distress disorder is no longer listed in any linearization, at least in the public version of the Beta drafting platform.

that Neurasthenia, which was previously proposed to be eliminated for both the core and primary care versions, is now back in the Beta draft for Foundation Component, Primary Care High Resource and Primary Care Low Resource linearizations, with its Definition text unmodified from ICD-10.

But I have no clarification of intention or any information on what definition, disorder descriptions and criteria set will be going forward to ICD-11 field tests, and it could all change again, next week…

*In DSM-5, Somatic symptom disorder is cross-walked to ICD-10-CM F45.1 Undifferentiated somatoform disorder.

NCHS/CMS has proposed to insert the term Somatic symptom disorder into ICD-10-CM as an Inclusion to F45.1 Undifferentiated somatoform disorder.

References:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Text version

PDF version

Abstract

Purpose

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

Methods

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

Results

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

Conclusions

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

 

Between a Rock and a Hard Place: ICD-11 Beta draft: Definition added for “Bodily distress disorder”

Post #291 Shortlink: http://wp.me/pKrrB-3Gl

Update on February 2, 2014:

Since publishing my report, below, the Chapter 5 parent class:

“Bodily distress disorders, and psychological and behavioural factors associated with disorders or diseases classified elsewhere”

has been reverted by ICD-11 Revision to read, “Bodily distress disorders”.

The category, 5C70 Psychological and behavioural factors associated with disorders or diseases classified elsewhere [F54 in ICD-10], which had been, and remains listed as an Exclusion to class “Bodily distress disorders”, is now coded towards the end of the list of Chapter 5 Mental and behavioural disorders categories, rather than listed as a hierarchical child category under:

“Bodily distress disorders, and psychological and behavioural factors associated with disorders or diseases classified elsewhere”.

Note that the Definition and Inclusions for “5C70 Psychological and behavioural factors associated with disorders or diseases classified elsewhere” are legacy text carried over from ICD-10. The Fxx codes listed under “Exclusions” for this category have not yet been updated to reflect the new ICD-11 coding structure.

This section of Chapter 5 now displays as in this screenshot, immediately below, when viewed in the ICD-11 Beta drafting platform Foundation View, at February, 2, 2014:

http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f1472866636

BDD at 02.02.14

A change also for Hypochondriasis – which has also been removed from under parent class, Bodily distress disorders, and is currently assigned dual parentage under: Obsessive-compulsive and related disorders; and Anxiety and fear-related disorders.

This means that the only categories currently coded under parent term “Bodily distress disorders” (previously, “Bodily distress disorders, and psychological and behavioural factors associated with disorders or diseases classified elsewhere”) are “Bodily distress disorder” and “Severe bodily distress disorder

Update on February 1, 2014:

In June 2013, Prof David Goldberg co-authored a paper: Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (MUS) in Mental Health in Family Medicine. Co-author, Gabriel Ivbijaro, is Editor in Chief, Mental Health in Family Medicine and a past Chair of the Wonca Working Party on Mental Health. Mental Health in Family Medicine is the official journal of The World Organization of Family Doctors (Wonca) Working Party on Mental Health. I don’t have access to this paper, which is currently embargoed, but it should be free in PMC on June 1, 2014 [5].

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BDDJan_28_14

Screenshot: Chapter 5, ICD-11 Beta drafting platform, public version: January 29, 2014

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Between a Rock and a Hard Place

A definition for “Bodily distress disorder” has very recently been entered into the public version of the ICD-11 Beta drafting platform by ICD-11 Revision.

You can view the definition text, as it stands at January 29, in the public version of the Beta drafting platform, here:

Joint Linearization for Mortality and Morbidity Statistics view

Bodily distress disorder

Parent(s)

Bodily distress disorders, and psychological and behavioural factors associated with disorders or diseases classified elsewhere

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).

All Index Terms

  • Bodily distress disorder

Or here, in the Beta Foundation view

—————-

Only the ICD-11 Short (100 word) Definition for this proposed new ICD category has been inserted. At this point, no Inclusion Terms, Exclusions, Synonyms, Narrower Terms, Diagnostic Criteria or other potential Content Model descriptors have been populated.

No Definition or severity characteristics have yet been assigned to Severe bodily distress disorder to differentiate between the two coded severities: “Bodily distress disorder” and “Severe bodily distress disorder.” (Unique codes for a “Mild bodily distress disorder” and a “Moderate bodily distress disorder” were dropped in mid 2013.)

In order to place this development into context here are some notes:

It’s important to understand that there are two working groups reporting to the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders that are charged with making recommendations on the revision of the Somatoform Disorders for the primary care version and core version of ICD-11:

The 12 member Primary Care Consultation Group (PCCG) leads the development and field testing of the revision of all 28 mental and behavioural disorders for inclusion in the next ICD primary care classification (ICD-11-PHC), an abridged version of the core ICD classification. The PCCG is chaired by Prof Sir David Goldberg. Per Fink’s colleague, Marianne Rosendal, is a member of this group.

The 17 member Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG) is advising on the revision of ICD-10’s Somatoform Disorders. The S3DWG is chaired by Prof Oye Gureje. DSM-5 Somatic Symptom Disorder work group member, Prof Francis Creed, is a member of this group.

In 2011, the Primary Care Consultation Group’s proposals for a replacement for the “Unexplained somatic symptoms/medically unexplained symptoms” category were put out for review and evaluation in primary care settings to nine  international focus groups* in seven countries [1].

*Austria, Brazil, Hong Kong, New Zealand, Pakistan, Tanzania and United Kingdom.

The PCCG anticipated refining their recommendations in the light of focus group responses before progressing to field testing the new disorder.

New disorders that survive the primary care field tests must have an equivalent disorder in the main ICD-11 classification.

Since any new primary care disorder concept will need to integrate into the ICD-11 core version, one might expect some cross-group collaboration between these two advisory committees.

But in their respective 2012 journal papers, the groups presented divergent constructs and neither group refers to the work being undertaken by the other group, or sets out how the two groups relate to each other, or how the primary care group relates to the overall revision process for the Somatoform Disorders.

The specific tasks of the S3DWG include, among others:

“3. 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.

“4. 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.”

It is unclear how ICD-11 Revision is co-ordinating the input from the two groups, that is, will it be the PCCG’s revised recommendations that progress to field testing, this year, and if so, how would a divergent set of proposals, developed in parallel by the S3DWG group, relate to the field testing and to the overall revision of the SDs?

Or, will ICD-11 Revision require the PCCG group and the S3DWG group to agree on what to call any proposed, single disorder replacement for six or seven SD categories and to reach consensus over what construct, definition, characteristics and criteria will go forward to ICD-11 field testing, and if so, has consensus now been reached?

Field tests are expected to start this year. Currently, there is no publicly available 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 this Beta draft definition.

It has been crafted with sufficient elasticity to allow either group’s construct to be shoehorned into it.

ICD-11 Revision is possibly hedging its bets depending on the outcome of its field tests. But the devil’s in the detail and without the detail, it isn’t clear whether this definition describes the construct favoured by the S3DWG in late 2012, or by the PCCG in mid 2012, or a more recent revision by one of the groups, or a compromise between the two.

The definition wording is based – in some places verbatim – on the construct descriptions presented in the Gureje, Creed (S3DWG) “Emerging themes…” paper, published in late 2012 [2].

Extract, Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012:

“…At the time of preparing this review, a major highlight of the proposals of the S3DWG for the revision of the ICD-10 somatoform disorders is that of subsuming all of the ICD-10 categories of F45.0 – F45.9 and F48.0 under a single category with a new name of ‘bodily distress disorder’ (BDD).

“In the proposal, BDD is defined as ‘A disorder characterized by high levels of preoccupation related to bodily symptoms or fear of having a physical illness with associated distress and impairment. The features include preoccupation with bothersome bodily symptoms and their significance, persistent fears of having or developing a serious illness or unreasonable conviction of having an undetected physical illness, 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 of functioning or frequent seeking of reassurance.'”

This 2012 paper goes on to say that the S3DWG’s emerging proposals specify a much simplified set of criteria for a diagnosis of Bodily distress disorder (BDD) that requires the presence of: 1. High levels of preoccupation with a persistent and bothersome bodily symptom or symptoms; or unreasonable fear, or conviction, of having an undetected physical illness; plus 2. The bodily symptom(s) or fears about illness are distressing and are associated with impairment of functioning.

And that in doing away with the “unreliable assumption of its causality” the diagnosis of BDD does not exclude the presence of depression or anxiety, or of a co-occurring physical health condition.

Which is a disorder construct into which DSM-5’s “Somatic Symptom Disorder” (SSD) could be integrated, thus facilitating harmonization between ICD-11 and DSM-5.

But without clarification from ICD-11 Revision (or further published papers, reports or sight of the field test protocol) I do not think one can safely extrapolate that it is the current proposals of the S3DWG group that are going forward to field testing, this year, in preference to a construct and criteria favoured by the PCCG group.

With the caveat that proposals by both groups are likely to have been modified since publication of their respective 2012 papers, or may have since converged into a consensus concept, to recap briefly:

In mid 2012, the Goldberg led PCCG primary care group was proposing a new term called “Bodily stress syndrome (BSS),” to replace ICD’s primary care category, “F45 Unexplained somatic symptoms.” This single BSS category would also absorb F48 Neurasthenia, which is proposed to be eliminated for ICD-11-PHC.

In late 2012, the S3DWG group was proposing to subsume the six ICD-10 categories F45.0 – F45.9, plus F48.0 Neurasthenia, under a single disorder category, but under the disorder name, “Bodily distress disorder” (BDD).

So at that point, the two groups differed on what term should be used for this new disorder.

The two group’s proposed constructs, criteria and exclusions also diverged, with the PCCG group incorporating characteristics of Fink et al’s “Bodily Distress Syndrome” [3] construct, and based on the “autonomic arousal” (or “over-arousal”) illness model, with symptom clusters or symptom patterns from one or more body systems, but also requiring some SSD-like psychobehavioural responses to meet the diagnosis. But, “If the symptoms are accounted for by a known physical disease this is not BSS.”

While the emerging proposals of the S3DWG group leaned more towards a “pure” DSM-5 SSD-like construct that could be diagnosed in patients with persistent “excessive” psychobehavioural responses to bodily symptoms in the presence of any diagnosed disease, patients with so-called “functional somatic syndromes” and patients with somatic symptoms of unclear etiology, but with no evident requirement for specific symptom counts, or for symptom clusters from one or more body systems or for the symptoms to be “medically unexplained.” [4]

What wasn’t explicitly set out in the PCCG’s 2012 paper was whether the group intended to mirror the Fink et al BDS construct to the extent of extending the diagnosis to be inclusive of the so-called “functional somatic syndromes,” FM, CFS and IBS (which are currently discretely coded or indexed within ICD-10 in chapters outside the mental and behavioural disorders chapter).

This 2013 paper, below, interprets that it is the intention of the Primary Care Consultation Group to capture FM, CFS and IBS:

http://www.ncbi.nlm.nih.gov/pubmed/24295235

Free PDF: http://www.uam.es/becarios/jbarrada/papers/hads.pdf

Psychol Assess. 2013 Dec 2. [Epub ahead of print] Bifactor Analysis and Construct Validity of the HADS: A Cross-Sectional and Longitudinal Study in Fibromyalgia Patients. Luciano JV, Barrada JR, Aguado J, Osma J, García-Campayo J.

“[…] In the upcoming primary healthcare version of the ICD-11 (ICD-11-PHC), FM will be classified as part of bodily stress syndrome (BSS; Lam et al., 2013). This new diagnosis will group patients who might have previously been considered different (e.g., those with FM, chronic fatigue syndrome, irritable bowel syndrome, and so on). Frontline clinicians (e.g., GPs) will need reliable tools to identify possible/probable clinical cases of anxiety (i.e., cognitive over-arousal) among patients with BSS who are characterised by elevated somatic over-arousal…”

Prof Tony Dowell, New Zealand, is a member of the PPCG. In this slide presentation Prof Dowell lists IBS, Fibromylagia and CFS under “Bodily Stress Syndromes.” Prof Dowell is already promoting the use of the BSS construct, in New Zealand, despite its current lack of validation:

Slide presentation

Slide 29

Bodily Stress Syndromes

• Gastroenterology – IBS, Non ulcer dyspepsia
• Rheumatology – Fibromyalgia
• Cardiology – Non cardiac chest pain
• Respiratory – hyperventilation
• Dental – TMJ syndrome
• Neurology – ‘headache’
• Gynaecology – chronic pelvic pain
• Psychiatry – somatiform [sic] disorders
• Chronic fatigue Syndrome

Reading the responses of the focus groups, as reported in the Lam et al paper [1], it is evident that some focus group participants understood the proposed BSS construct as a diagnosis under which IBS, Fibromylagia and CFS patients could potentially be assigned; though one of the New Zealand focus groups noted there was quite a strong feeling that CFS did not fit the paradigm as well as other [FSS] disorders, particularly when there was a good history of preceding viral infection.

Whilst a number of diseases are listed in the PCCG criteria, as proposed in 2012, under “Differential diagnoses,” including multiple sclerosis, hyperparathyroidism, systemic lupus erythematosus and Lyme disease – IBS, Fibromylagia, CFS and ME are omitted from the list of “Differential diagnoses” examples.

In June 2013, Prof David Goldberg co-authored a paper: Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (MUS) in Mental Health in Family Medicine. Co-author, Gabriel Ivbijaro, is Editor in Chief, Mental Health in Family Medicine and a past Chair of the Wonca Working Party on Mental Health. Mental Health in Family Medicine is the official journal of The World Organization of Family Doctors (Wonca) Working Party on Mental Health.

I don’t have access to this paper, which is currently embargoed, but it should be free in PMC on June 1, 2014 [5].

—————-

When viewing the Beta drafting platform, note that the descriptive text for the ICD-11 Beta draft parent term, “Bodily distress disorders, and psychological and behavioural factors associated with disorders or diseases classified elsewhere,” which can be viewed here: ICD-11 Beta drafting platform Foundation view is the legacy text from the beginning of the ICD-10 Somatoform Disorders section (compare in ICD-10 here):

This F45 section introduction text has not yet been revised to reflect the proposed dismantling and reorganization of the ICD-10 Somatoform Disorders section for ICD-11.

Caveat: The ICD-11 Beta draft is not a static document – it is a work in progress, subject to daily revisions and refinements and to approval by the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders, the ICD-11 Revision Steering Group, and WHO classification experts. Proposals for some new or revised disorders may be subject to re-evaluation and revision following ICD-11 field testing.

References:

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

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 et al’s Bodily Distress Syndrome

Per Fink and colleagues are lobbying for their “Bodily Distress Syndrome” (BDS) construct to be integrated into forthcoming classification systems and adopted as a diagnosis by primary care practitioners. They propose the reclassification of the somatoform disorders, pain disorder, neurasthenia and the so-called functional somatic syndromes, including fibromyalgia (FM), irritable bowel syndrome (IBS) and chronic fatigue syndrome (CFS), under a single, unifying diagnosis, “Bodily Distress Syndrome,” already in use in clinical and research settings in Denmark.

4. BDS, BDDs, BSS, BDD unscrambled

5. 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. No abstract available. [PMID: 24427171] Currently embargoed: Free in PMC on June 1, 2014. PMC Archives

G Ivbijaro is Editor in Chief, Mental Health in Family Medicine and a past Chair of the Wonca Working Party on Mental Health. D Goldberg chairs the Primary Care Consultation Group (PCCG) leading the development and field testing of the next ICD primary care classification (ICD-11-PHC).

6. General information on ICD-11 Field Tests:

2012 Annual Report of the International Union of Psychological Science to the American Psychological Association Revision of World Health Organization’s ICD-10 Mental and Behavioural Disorders, Pierre L.-J. Ritchie, Ph.D, January, 2013, Pages 8-11

http://www.apa.org/international/outreach/icd-report-2012.pdf

WHO ICD Revision Information Note: Field Trials, 23 January 2013

http://informatics.mayo.edu/WHO/ICD11/collaboratory/attachments/255/15.Field_Trials.pdf

Clarification: Coalition for Diagnostic Rights website

Post #288 Shortlink: http://wp.me/pKrrB-3Dn

Clarification: Coalition for Diagnostic Rights

A website called Coalition for Diagnostic Rights has recently been launched.

The site includes references to Suzy Chapman and to Dx Revision Watch.

Suzy Chapman/Dx Revision Watch is not associated with or affiliated to the Coalition for Diagnostic Rights website or with any registered or unregistered organization associated with that site, and has no responsibility for content published on that site, or published in the name of that site on other platforms.

Suzy Chapman
Dx Revision Watch

Omissions in commentary: “Diagnostic Ethics: Harms vs Benefits of Somatic Symptom Disorder”

Post #287 Shortlink: http://wp.me/pKrrB-3Ch

On December 16, Allen Frances, MD, who led the task force responsible for the development of DSM-IV, published a new commentary at Huffington Post titled: Diagnostic Ethics: Harms vs Benefits of Somatic Symptom Disorder.

This commentary is also published at Saving Normal (hosted by Psychology Today) under the title: Diagnostic Ethics: Harms/Benefits- Somatic Symptom Disorder: Advice to ICD 11-don’t repeat DSM 5 mistakes.

There are a two important oversights in this commentary around ICD and DSM-5’s controversial new diagnostic category, Somatic Symptom Disorder (SSD).

Dr Frances writes:

“…The DSM-5 damage is done and will not be quickly undone. The arena now shifts to the International Classification of Diseases 11 which is currently being prepared by the World Health Organization and is due to be published in 2016. The open question is whether ICD 11 will mindlessly repeat the mistakes of DSM-5 or will it correct them?”

But Dr Frances omits to inform his readers that in September, a proposal was snuck into the Diagnosis Agenda for the fall meeting of the NCHS/CMS ICD-9-CM Coordination and Management Committee to insert Somatic Symptom Disorder as an inclusion term into the U.S.’s forthcoming ICD-10-CM*.

*ICD-10-CM has been adapted by NCHS from the WHO’s ICD-10 and will replace ICD-9-CM as the U.S.’s official mandated code set, following implementation on October 1, 2014.

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A foot in the door of ICD

APA has been lobbying CDC, NCHS and CMS to include new DSM-5 terms in the ICD-10-CM.

If NCHS rubber stamps the addition of Somatic Symptom Disorder as an official codable diagnostic term within ICD-10-CM, it could leverage the future replacement of several existing ICD-10-CM Somatoform disorders categories with this new, poorly validated, single diagnostic construct, bringing ICD-10-CM in line with DSM-5.

There are implications for ICD-11, too.

Once SSD is inserted into ICD-10-CM, the presence of this term within the U.S. adaptation of ICD-10 may make it easier for ICD-11 Revision Steering Group to justify the replacement of several existing ICD-10 Somatoform disorders categories with a single, new ICD construct contrived to incorporate SSD-like characteristics and facilitate harmonization between ICD-11 and DSM-5 disorder terms and diagnostic criteria.

Yet Dr Frances, so vocal since December 2012 on the perils of the new Somatic Symptom Disorder construct, has written nothing publicly about this move to insinuate the SSD term into ICD-10-CM and curiously, makes no mention of this important U.S. development in his latest commentary.

Emerging proposals for the Beta draft of ICD-11 do indeed demand close scrutiny. But U.S. professionals and patient groups need to be warned that insertion of Somatic Symptom Disorder into the forthcoming ICD-10-CM is currently under consideration by NCHS and to consider whether they are content to let this barrel through right under their noses and if not, and crucially, what courses of political action might be pursued to oppose this development.

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Only half the story

A second omission: Dr Frances’ commentary references the deliberations of the WHO Expert Working Group on Somatic Distress and Dissociative Disorders (a 17 member group chaired by O Gureje) which published a paper, in late 2012, reviewing the classification of the somatoform disorders, as currently defined, and discussing the group’s emerging proposals for ICD-11 [1].

But as Dr Frances is aware, this is not the only working group that is making recommendations for the revision of ICD-10’s Somatoform disorders.

The WHO Department of Mental Health and Substance Abuse has appointed a Primary Care Consultation group (PCCG) to lead the development of the revision of the mental and behavioural disorders for the ICD-11 primary care classification (known as the ICD-11-PHC), which is an abridged version of the core ICD classification.

The PCCG reports to the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders and comprises a 12 member group of primary care professionals and mental health specialists representing both developed and low and middle-income countries.

The group is chaired by Prof, Sir David Goldberg, professor emeritus at the Institute of Psychiatry, London (a WHO Collaborating Centre), who has a long association with WHO, Geneva, and with the development of primary care editions of ICD.

The PCCG members are: SWC Chan, AC Dowell, S Fortes, L Gask, D Goldberg (Chair), KS Jacob, M Klinkman (Vice Chair), TP Lam, JK Mbatia, FA Minhas, G Reed, and M Rosendal.

(Dr Reed is Senior Project Officer for the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders; Dr Klinkman is Chair, WONCA International Classification Committee; Dr Rosendal is a member of WONCA International Classification Committee.)

The PCCG has been charged with developing and field testing the full set of disorders for inclusion in ICD-11-PHC, in preparation for worldwide adoption. It is anticipated that for the next edition, 28 mental disorder categories commonly managed within primary care will be included.

For all new and revised disorders included in the next ICD Primary Care version there will need to be an equivalent disorder in the ICD-11 core classification and the two versions are being developed simultaneously.

The group will be field testing the replacement for ICD-10-PHC’s F45 Unexplained somatic symptoms over the next couple of years and multi-centre focus groups have already reviewed the PCCG‘s proposals [2].

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The PCCG’s alternative construct – a BDS/SSD mash-up

As set out in several previous Dx Revision Watch posts, according to its own 2012 paper, the Primary Care Consultation Group has proposed a new disorder category, tentatively named, in 2012, as “Bodily stress syndrome” (BSS) which differed in both name and construct to the emerging proposals of the WHO Expert Working Group on Somatic Distress and Dissociative Disorders.

So we have two working groups advising ICD-11 and two sets of proposals.

The defining characteristics of the PCCG’s proposed new disorder, Bodily stress syndrome (as set out in its 2012 paper), draw heavily on the characteristics, criteria and illness model for Per Fink et al’s Bodily Distress Syndrome – a divergent construct to SSD – onto which the PCCG has tacked a tokenistic nod towards selected of the psychobehavioural features that define DSM-5’s Somatic symptom disorder.

Whereas in late 2012, the emerging construct of the other working group advising on the revision of ICD-10’s Somatoform disorders, the WHO Expert Working Group on Somatic Distress and Dissociative Disorders, was much closer to a “pure” SSD construct.

Neither proposed construct may survive the ICD-11 field trials or ICD-11 Revision Steering Group approval.

Fink and colleagues (one of whom, M Rosendal, sits on the Primary Care Consultation Group) are determined to see their Bodily Distress Syndrome construct adopted by primary care clinicians, incorporated into new management guidelines and integrated into the revisions of several European classification systems.

Their aim is to replace ICD-10’s F45 somatoform disorders, pain disorder, neurasthenia (ICD-10 F48), and the so-called “functional somatic syndromes”: Fibromyalgia (ICD-10 M79.7), IBS (ICD-10 K58) and CFS (indexed to ICD-10 G93.3), with their own single, unifying “Bodily Distress Syndrome” diagnosis, a disorder construct that is already in use in research and clinical settings in Denmark.

It remains unknown whether the two groups making recommendations for the revision of ICD-10’s Somatoform disorders have since reached consensus over what disorder name, definition and criteria WHO intends to submit to international field testing over the next year or two.

It’s not yet clear whether this proposed new BDD/BSS/WHATEVER diagnosis for the ICD-11 primary care and core version construct will have greater congruency with DSM-5’s SSD, or with Fink et al’s already operationalized BDS, or would combine elements from both; nor is it known which patient populations the new ICD construct is intended to include and exclude.

(In its 2012 proposed criteria, the PCCG does not specify FM, IBS, CFS or ME as Exclusion terms or Differential diagnoses to its BSS diagnosis.)

If WHO Revision favours the field testing and progression of an SSD-like construct for ICD-11 there will be considerable implications for all patient populations with persistent diagnosed bodily symptoms or with persistent bodily symptoms for which a cause has yet to be established.

If WHO Revision favours the progression of a Fink et al BDS-like construct and illness model, such a construct would shaft patients with FM, IBS and CFS and some other so-called “functional somatic syndromes.”

But Dr Frances says nothing at all in his commentary about the deliberations of the Primary Care Consultation Group despite the potential impact the adoption of a Fink et al BDS-like disorder construct would have on the specific FM, IBS, CFS and ME classifications that are currently assigned discrete codes outside the mental disorder chapter of ICD-10.

In sum:

The proposal to insert SSD into the U.S.’s forthcoming ICD-10-CM needs sunlight, continued monitoring and opposition at the political level by professionals and advocacy groups. Exclusive focus on emerging proposals for ICD-11 obscures the September 2013 NCHS/CMS proposals for ICD-10-CM.

The deliberations of both working groups that are making recommendations for the revision of the Somatoform Disorders for the ICD-11 core and primary care versions demand equal scrutiny, monitoring and input by professional and advocacy organization stakeholders.

It is disconcerting that whilst several paragraphs in Dr Frances’ commentary are squandered on apologia for those who sit on expert working groups, these two crucial issues have been sidelined.

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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 2012 Jul 28. http://www.ncbi.nlm.nih.gov/pubmed/22843638 [Full text behind paywall]

3. Further reading: BDS, BDDs, BSS, BDD and ICD-11, unscrambled

4. ICD-9-CM/PCS Coordination and Maintenance Committee Meeting September 18-19, 2013:
http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

September meeting Diagnostic Agenda/Proposals document [PDF – 342 KB]:
http://www.cdc.gov/nchs/data/icd/icd_topic_packet_sept_181913.pdf

Compiled by Suzy Chapman for Dx Revision Watch
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