Comment submitted to ICD-11 Topic Advisory Group for Mental Health re: Bodily distress disorder

Post #323 Shortlink: http://wp.me/pKrrB-465

There are two ways in which stakeholders can submit comments on proposals in the ICD-11 Beta draft or make formal suggestions for changes or additions to the draft:

by selecting a disorder or disease term and submitting a comment on the proposed ICD-11 Title term, on the proposed Definition text (if a Definition has already been populated), or commenting on the lists of Synonyms, Inclusions, Exclusions or on any other Content Model descriptors. Users may also leave replies to comments submitted by other users or invite others to participate in threads;

by selecting a disorder or disease term and suggesting changes to the classification or enhancement of existing content by proposing Definition texts, additional Synonyms or Exclusions, additional child entities, changes to existing parent/child hierarchies or deletions of existing entities – ideally supported with rationales and references. Proposals for changes or suggestions for modifications are submitted via the Proposals Mechanism platform. This platform also supports user comments. Once submitted, the progress of a proposal can be tracked.

To register for interaction with the Beta draft see User Guide: Information on registering and signing in

To comment on existing proposals see User Guide: Commenting on the category

To suggest changes or submit new proposals see User Guide: Proposals

At the time of writing, the Beta draft is subject to a frozen release (frozen May 31, 2015) but this does not prevent registered users from continuing to commenting on the ICD-11 Beta draft or from submitting proposals via the Proposals Mechanism.

Comment submitted to TAG Mental Health in May re: Bodily distress disorder

On May 2, 2015, I posted a commentary via the ICD-11 Beta platform Comment facility. As one needs to be registered in order to read/make comments and submit proposals, I have pasted a copy, below.

Once uploaded, Comments and Proposals are screened and forwarded to the appropriate Topic Advisory Group (TAG) Managing Editors for their consideration. In this case, my comment will have been forwarded to the Topic Advisory Group for Mental Health.

Some of the points raised, below, had already been raised by me, either via the Beta platform or directly with ICD Revision personnel. But it may be advantageous to consolidate these points within the one comment for two reasons:

Firstly, the level of global concern around ICD-11 proposals by the WHO ICD-11 Working Group on Somatic Distress and Dissociative Disorders for a new disorder construct, currently proposed to be called “Bodily distress disorder (BDD),” and also for the alternative proposals of the ICD-11 Primary Care Consultation Group.

Secondly, the unsoundness of introducing into ICD a new disorder category that proposes to use terminology which is already closely associated with a conceptually divergent disorder construct isn’t being given due attention in journal papers or editorials and has yet to be acknowledged or addressed by the ICD-11 subworking group responsible for this recommendation.

 

Click link for PDF document   Chapman BDD Submission May 2015

Comment, Bodily distress disorder

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/767044268?showcomment=_4_id_3_who_3_int_1_icd_1_entity_1_767044268 [Log in required]

Suzy Chapman 2015-May-02 – 20:43 UTC

It should be noted that earlier this year, TAG Mental Health added the new DSM-5 disorder term “Somatic symptom disorder” under Synonyms to “Bodily distress disorder (BDD).”

I welcome affirmation that BDD, as defined by ICD-11 Beta, shares common conceptual features with DSM-5’s SSD.

However, as with “Somatic symptom disorder”, the proposed “Bodily distress disorder” diagnosis is unsupported by any substantial body of evidence for its likely validity, safety and acceptability. We [Allen Frances and Suzy Chapman, 2012-13] have called for a higher standard of evidence and risk-benefit analysis for ICD Revision [1][2][3].

BDD’s characterization, as entered into the Beta draft and as described by Gureje and Creed (2012), is far looser than the (rarely used) definitions of Somatization disorder in DSM-IV and in ICD-10 [4].

BDD broadens the diagnosis to include those where a diagnosed general medical condition is causing or contributing to the symptom(s) if the degree of attention is considered excessive in relation to the condition’s nature and progression. Like SSD, the diagnosis does not require symptoms to be “medically unexplained” but instead refers to any persistent and clinically significant somatic complaint(s) with associated psychobehavioural responses: excessive thoughts, feelings and behaviours. There were long-standing concerns for the over-inclusiveness of DSM-IV’s Undifferentiated somatoform disorder.

BDD’s three severity specifiers rely on highly subjective clinical decision making around loose and difficult to measure cognitions; as with SSD, there are considerable concerns that lack of specificity will expose patients to risk of misdiagnosis, missed or delayed diagnosis, misapplication of a mental disorder, iatrogenic disease and stigma.

Whether the term “Bodily distress disorder” (or “Body distress disorder,” as Sudhir Hebbar [a psychiatrist who had left an earlier comment on the Beta draft in respect of the proposed BDD name and disorder construct] has suggested) is used for this proposed replacement for the Somatoform disorder categories, F45.0 – F45.9, plus F48.0 Neurasthenia, both the disorder conceptualization and the terminology remain problematic.

The terms “Bodily distress disorder” and “Bodily distress syndrome” (Fink et al, 2010) are already being used synonymously in the literature.

The terms are used interchangeably in papers by Fink and colleagues from around 2007 onwards [5] and by Creed, Guthrie et al, in 2010 [6]. They are used interchangeably by Professor Creed in symposia presentations.

In a September 2014 editorial by Rief and Isaac [7] the term “Bodily distress disorder” has been employed throughout, whereas the construct that Rief and Isaac are actually discussing is the Fink et al (2010) BDS disorder construct – not the “BDD” construct, as defined in the Beta draft – which the authors do not discuss, at all.

According to the Beta draft Definition and BDD’s three severity characterizations (Mild; Moderate; Severe), the WHO ICD-11 Working Group on Somatic Distress and Dissociative Disorders (the S3DWG) defines “Bodily distress disorder” as having strong construct congruency and characterization alignment with DSM-5’s “Somatic Symptom Disorder” and poor conceptual alignment with Fink et al’s, already operationalized, “Bodily distress syndrome” [8].

If, in the context of ICD-11 usage, the S3DWG’s proposal for a replacement for the Somatoform disorders remains for a disorder model with greater conceptual concordance with the DSM-5 SSD construct there can be no rationale for proposing to name this disorder “Bodily distress disorder.”

There is significant potential for confusion over disorder conceptualization and for disorder conflation if the S3DWG’s proposed replacement 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.

Additionally, the acronym “BDD” is already in use to indicate Body Dysmorphic Disorder.

If ICD-11 intends to proceed with the BDD construct following field test evaluation, and despite the lack of a body of evidence for validity, safety and acceptability, then an alternative disorder term needs to be assigned.

In a 2010 paper, Creed and co-authors advanced that “Somatic symptom disorder is not a term that is likely to be embraced enthusiastically by doctors or patients; it has an uncertain core concept, dubious wide acceptability across cultures and does not promote multidisciplinary treatment” and they expressed a preference for the term, “bodily distress syndrome/disorder” [6].

I have no evidence that Prof Creed has changed his opinions about SSD since the publication of DSM-5 and perhaps he remains wedded to the “Bodily distress disorder” term (and wedded to the BDS construct) and is reluctant to relinquish the term.

Creed, Henningsen and Fink acknowledge that Fink et al’s (2010) BDS construct is very different to DSM-5’s SSD; that BDS and SSD have very different criteria and that they capture, or potentially capture, different patient populations [9].

Budtz-Lilly, Fink et al (In Press) outline some of the conceptual differences between SSD and BDS:

“The newly introduced DSM-5 diagnosis, somatic symptom disorder (SSD), has replaced most of the DSM-IV somatoform disorder subcategories [10]. The diagnosis requires the presence of one or more bothering somatic symptoms of any aetiology and is not based on exclusion of any medical condition (…) BDS and SSD represent two very conceptually different diagnoses. BDS is based on symptom pattern recognition only, and symptoms are thought to be caused by hyperactivity in the central nervous system, whereas SSD criteria are based on prominent positive psycho-behavioural symptoms or characteristics, but no hypothesis of aetiology. BDS is assessed without asking patients about psychological symptoms.” [10]

In order to fulfill the clinical criteria of BDS, the symptom pattern may not be better explained by another disease. Whereas the SSD diagnosis may be applied to a heterogeneous group of patients: as a “bolt-on” mental health diagnosis for patients with, for example, cancer, cardiovascular disease, diabetes and chronic pain conditions, or to patients with so-called specialty-specific functional somatic syndromes, or to patients with “functional symptoms”, if the criteria are otherwise met.

SSD, then, clearly cannot be BDS. And if the S3DWG’s BDD is close in conceptualization and criteria to SSD, then the S3DWG’s BDD cannot be BDS, either. But the terms BDD and BDS are already used interchangeably outside ICD-11.

What is the S3DWG rationale for proposing to use this disorder term when the group is aware that outside the context of ICD-11 Beta proposals, the term is synonymously used with an already operationalized, but divergent disorder construct?

Whatever the group’s justification, the term is clearly inappropriate; it needs urgent scrutiny beyond the S3DWG group and I call on TAG Mental Health and the Revision Steering Group to review the BDD disorder descriptions in the context of the group’s current choice of terminology.

But the waters get even muddier:

Possibly Sudhir Hebbar and other users of the Beta platform are unaware that in addition to the 17 member S3DWG subworking group’s proposals, the 12 member Primary Care Consultation Group (PCCG) is also charged with advising ICD-11 on the revision of the ICD-10 Somatoform disorders framework and disorder categories.

The 28 mental disorders approved for inclusion in the abridged ICD-11 primary care version will require an equivalent category within the core edition.

The Primary Care Consultation Group [chair, Prof, Sir David Goldberg] has proposed an alternative construct which it proposes to name, “Bodily stress syndrome (BSS)”. The PCCG’s “BSS” draws heavily on the Fink et al (2010) “Bodily distress syndrome” disorder construct and criteria [8][11].

(NB: Rief and Isaac [7] question the justification of the BDS construct for inclusion within a mental disorder classification due to the absence of requirement for positive psychobehavioural features. In 2012, the PCCG’s proposed “BSS” had included some psychobehavioural features to meet the criteria, tacked onto an essentially BDS-like model. Whether this modification was intended as a nod towards DSM-5’s SSD or to legitimise inclusion of a BDS-like model/criteria set within a mental disorder classification is not discussed within the group’s 2012 paper. With no recent update on proposals available, I cannot confirm whether the PCCG’s adapted BDS retains these additional psychobehavioural features.)

Budtz-Lilly, Fink et al (In Press) write:

“In the current draft, the ICD-11 primary care work group has included these [BDS] criteria in their suggestion for a definition of bodily (di)stress syndrome with minor adaptations.” [10] (The paper does not specify what these “minor adaptations” are.)

The authors go on to state:

“Furthermore the ICD-11 somatoform disorder psychiatry work group has announced that the term ‘bodily distress disorder’ will be used for the diagnosis.”

Here, one assumes the authors are referring to the S3DWG subworking group. It is disingenuous of the authors to imply that the S3DWG is onside with the PCCG’s proposals, whilst omitting any discussion of the core differences between the two groups’ proposed disorder constructs and criteria.

According to Ivbijaro and Goldberg (2013) the Primary Care Consultation Group’s (adapted “BDS”) construct has been progressed to field tests [12].

In his September 2014 presentation at the XVI World Congress of Psychiatry, in Madrid, Prof Oye Gureje confirmed that the S3DWG’s “Bodily Distress Disorder” is also currently a subject of tests of its utility and reliability in internet- and clinic-based studies.

So both sets of proposals are undergoing field testing. But since the proposed full disorder descriptions, criteria, differential diagnoses, exclusions etc have not been public domain published and because no progress reports have been issued by either work group since 2012, stakeholders are still unable to scrutinize and compare the two sets of current proposals, side by side.

Significant concerns remain around the deliberations of these two working groups:

a) their lack of transparency: there have been no papers or progress reports published on behalf of either group since 2012; the key Gureje and Creed 2012 paper remains behind a paywall;

b) no rationale has been published for the S3DWG’s proposal to call its proposed construct “BDD” when it evidently has greater conceptual concordance with SSD and poor concordance with Fink et al’s BDS, for which the “BDD” term is already in use, synonymously; there has been no discussion by either group for the implications for construct integrity;

c) it remains unclear whether the S3DWG’s “BDD” will incorporate Exclusions for CFS, ME, Fibromyalgia and IBS, which are currently discretely coded for within ICD-10, and which are considered may be especially vulnerable to misdiagnosis or misapplication of a diagnosis of “BDD”, under the construct as it is currently proposed;

[Dr Geoffrey Reed has said that he cannot request Exclusions until the missing G93.3 legacy terms have been added back into the Beta draft, but at such time, he would be happy to do so.]

d) the PCCG’s “BSS” proposed diagnosis appears to be inclusive of children [11] but there is currently no information from the S3DWG on whether their proposed “BDD” diagnosis is also intended to be applied in children and young people;

e) there is no body of independent evidence for the validity, reliability and safety of the application of “SSD”, “BDD”, “BSS” or Fink et al’s (2010) BDS in children and young people;

f) because of the lack of recent progress reports setting out current iterations for disorder descriptions and criteria, it cannot be determined what modifications and adaptations have been made by the PCCG to the Fink et al (2010) BDS disorder description/criteria for specific ICD-11 field test use. Likewise, the only information to which we have access for the criteria that are being field tested for BDD is what little information appears in the Beta draft.

Fink et al’s BDS construct is considered by its authors to have the ability to capture the somatoform disorders, neurasthenia, noncardiac chest pain and other pain syndromes, “functional symptoms”, and the so-called “FSSs”, including CFS, ME, Fibromyalgia and IBS [8][13].

[Under the Fink et al disorder construct, the various so-called specialty “functional somatic syndromes” are considered to be manifestations of a similar, underlying disorder.]

In Lam et al (2012) the PCCG list a number of diseases and conditions for consideration under Differential diagnosis, vis: “Consider physical disease with multiple symptoms, e.g. multiple sclerosis, hyperparathyroidism, acute intermittent porphyria, myasthenia gravis, AIDS, systemic lupus erythematosus, Lyme disease, connective tissues disease.”

Notably, Chronic fatigue syndrome, ME, IBS and Fibromyalgia are omitted from the Differential diagnosis list. The authors are silent about whether their adapted BDS is intended to capture these discretely coded for ICD-10 diagnoses and if not, how these disorder groups could be reliably excluded [11].

ICD Revision has said that it does not intend to classify CFS, ME and Fibromyalgia under Mental and behavioural disorders. However, it has not clarified what measures would be taken to safeguard these patient groups if BSS were to be approved by the RSG for use in the ICD-11-PHC version.

There have been considerable concerns, globally, amongst patients, patient advocacy groups and the clinicians who advise them for the introduction in Denmark of the BDS disorder construct: these concerns apply equally to “BSS”.

It should also be noted that since early 2013, the ICD-10 G93.3 legacy entities, Postviral fatigue syndrome; Benign myalgic encephalomyelitis; Chronic fatigue syndrome, have been absent from the public version of the Beta draft. For over two years, now, and despite numerous requests (including requests by UK health directorates, parliamentarians and registered advocacy organizations) proposals for the chapter location and parent classes for these three terms (and their proposed Definitions and other Content Model parameters) have not been released.

Again, I request that these terms are restored to the Beta draft, with a “Change History”, in order that professional and lay stakeholders are able to monitor and participate fully in the revision process, a process from which they are currently disenfranchised.

If any clinicians attempting to follow the revision of the Somatoform disorders share concerns for any of the issues raised in these comments and wish to discuss further, they are most welcome to contact me via “Dx Revision Watch.”


References

1 Frances A. The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill. BMJ. 2013 Mar 18;346:f1580.

2 Allen Frances, Suzy Chapman. DSM-5 somatic symptom disorder mislabels medical illness as mental disorder. Aust N Z J Psychiatry. 2013 May;47(5):483-4.

3 Frances A. DSM-5 Somatic Symptom Disorder. J Nerv Ment Dis. 2013 Jun;201(6):530-1.

4 Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry 2012;24:556-67.

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 Creed F, Guthrie E, Fink P et al, Is there a better term than ‘medically unexplained symptoms’?. J Psychosom Res. 2010;68:5-8

7 Rief W, Isaac M. The future of somatoform disorders: somatic symptom disorder, bodily distress disorder or functional syndromes? Curr Opin Psychiatry 2014 Sep;27(5):315-9.

8 Fink P, Schroder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res. 2010 May;68(5):415-26.

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

10 In Press: Anna Budtz-Lilly, Per Fink, Eva Ornbol, Mogens Vestergaard, Grete Moth, Kaj Sparle Christensen, Marianne Rosendal. A new questionnaire to identify bodily distress in primary care: The ‘BDS checklist’. J Psychosom Res. [Published J Psychosom Res. June 2015 Volume 78, Issue 6, Pages 536–545]

11 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.

12 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.

13 Fink et al: Proposed new classification: https://dxrevisionwatch.files.wordpress.com/2013/01/finkproposednewclass1.png


 

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

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

Edited version of the text published on 13.01.15.

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

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BDD130115

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

Two working groups, two sets of recommendations

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

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

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

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

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

So four very similar terms in play:

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

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

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

Bodily Distress Syndrome (Fink et al, 2010)

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

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

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

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

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

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

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

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

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

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

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

[…]

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

Session: Regular Symposium SPEAKER 3 Code SY469

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

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

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

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

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

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

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

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

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

Further reading:

1 Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS: Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Family Practice (2013) 30 (1): 76-87. Full free text: http://fampra.oxfordjournals.org/content/30/1/76.long

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

3 Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res. 2010 May; 68(5):415-26.  [Abstract: PMID: 20403500].

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

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.

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

Post #307 Shortlink: http://wp.me/pKrrB-3Ts

This post updates on further changes in the public version of the ICD-11 Beta drafting platform to the listing of proposed new ICD category, Bodily distress disorder.

Caveat: The ICD-11 Beta draft 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 International Advisory Group, the ICD Revision Steering Group and WHO classification experts. “Sorting codes” assigned to categories are subject to frequent change as chapters and categories are reorganized.

The revision of the Somatoform disorders categories has undergone a number of iterations since the release of the initial iCAT drafting platform, in May 2010.

Two working groups

The ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG) is one of two WHO convened groups charged with making recommendations for the revision of the ICD-10 Somatoform disorders categories.

The second group, the Primary Care Consultation Group (PCCG), leads the development of the revision of the mental and behavioural disorders for the primary care version of ICD-11, which will be known as the ICD-11-PHC.

The PCCG is making recommendations for the revision of ICD-10-PHC’s primary care diagnostic category, F45 Unexplained somatic symptoms/medically unexplained symptoms. Disorders included in the abridged primary care version will require an equivalent category within the core ICD-11 classification.

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What has the S3DWG work group been proposing?

The S3DWG has proposed Bodily distress disorder as a single diagnostic category to replace all of the ICD-10 Somatoform disorders between F45.0 – F45.9 and F48.0 Neurasthenia [1].

So initially, in the drafting platform, these ICD-10 legacy categories were removed.

As the Beta draft stood in mid 2013, Bodily distress disorder had been assigned three, uniquely coded severity specifiers: Mild BDD, Moderate BDD and Severe BDD. These were then reduced to just two: Bodily distress disorder and Severe bodily distress disorder.

So in January 2014, the Beta drafting platform had stood like this:

BDD at 02.02.14

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

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On February 18, I reported that Severe bodily distress disorder was no longer listed in the Beta drafting platform and had been replaced with the ICD-10 legacy category Somatization disorder.

I also reported that the ICD-10 category, Neurasthenia, previously proposed to be eliminated for both the ICD-11 core and Primary Care versions, had been inserted back into the Beta draft.

It was unclear how these two ICD-10 legacy categories were intended to relate to a single new diagnostic category whose conceptual framework had originally been proposed to replace both of them. The Definition texts displaying for both legacy categories had been imported unedited from ICD-10 and provided no clues to the (evidently revised) proposed framework.

So by February 2014, the draft stood like this:

BDD 240214

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

with Neurasthenia back in the draft under parent Mental and behavioural disorders:

Neurasthenia240214

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

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Since these changes, there have been several further modifications to the Beta draft:

Circa May 9, 2014:

Somatization disorder remained listed as a uniquely coded child category under Bodily distress disorder, with a definition comprising unedited text imported from the ICD-10 F45.0 classification.

But three uniquely coded severity specifiers had been added back in:

Bodily distress disorder, mild
Bodily distress disorder, moderate
Bodily distress disorder, severe

So by May 9, the Beta draft Joint Linearization for Mortality and Morbidity Statistics looked like this:

May_9_14_BDD

*Note that the “Sorting codes” assigned to categories change daily as chapters and category hierarchies are reorganized.

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Circa May 15, 2014:

Somatization disorder has now been removed from the Beta draft Linearizations as a uniquely coded child category under Bodily distress disorder.

Somatization disorder is now listed with the ICD-10 term somatoform disorders under Synonyms to Bodily distress disorder and both ICD-10 legacy terms are listed as Index Terms.

Update at June 6, 2014: The ICD-10 legacy terms, Somatoform disorders and somatization disorder are no longer listed under Index Terms to Bodily distress disorder in the Beta drafting platform or print version of the draft Alphabetical Index but remain listed under Synonyms. Both terms have been relocated under Index Terms to 6B4Z Bodily distress disorder, unspecified.

The three severity specifiers for BDD, (Mild, Moderate, Severe) remain.

So at May 27, the Beta draft Joint Linearization for Mortality and Morbidity Statistics looks like this:

May_15_14_BDD

Neurasthenia has also been removed from the Beta draft Linearizations. Nor is it listed in the PDF of the print version of the draft Alphabetical Index.

This might suggest that the most recent proposal has reverted back to eliminating Neurasthenia from ICD-11, but to retain both Somatization disorder and the term somatoform disorders under Synonyms to BDD, and as Index Terms (as opposed to retaining and coding specifically for Somatization disorder under new ICD parent term, Bodily distress disorder).

[Neurasthenia remains specified as an Exclusion to Generalized anxiety disorder (currently Chapter 06) and to Fatigue (currently Chapter 20) but this may be an oversight.]

You can view the entry for Bodily distress disorder here, in the Foundation Linearization, which also displays a Definition, Synonyms and Exclusions:

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

(Click on the small grey arrow to the left of the BDD category term to display the three severity specifiers.)

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Current ICD-11 Definition:

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

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).”

The psychological and behavioural features that characterize the disorder, as per this definition, are drawn from disorder conceptualizations in the 2012 Creed, Gureje paper on emerging proposals for Bodily distress disorder.

The paper 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 [1,2].

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In sum:

At the point of publishing this post, we can say that the public version of the Beta draft displays:

 a single Bodily distress disorder category with three uniquely coded (but as yet uncharacterized) severities replacing all the ICD-10 Somatoform disorders between F45.0 – F45.9 and ICD-10’s Neurasthenia (F48.0);

that the ICD-10 legacy terms, somatoform disorders (F45) and Somatization disorder (F45.0), are listed under Synonyms and under Index Terms to Bodily distress disorder.

Update at June 6, 2014: The ICD-10 legacy terms, Somatoform disorders and somatization disorder are no longer listed under Index Terms to Bodily distress disorder in the Beta drafting platform and print version of the Alphabetical Index but remain listed under Synonyms. Both terms have been relocated under Index Terms to 6B4Z Bodily distress disorder, unspecified.

that ICD-10’s Neurasthenia is no longer displaying in any Linearization and may remain proposed to be eliminated for ICD-11 (but remains anomalously specified in two chapters as an Exclusion term);

that an ICD-11 Definition for Bodily distress disorder has been entered into the draft, the wording for which is based on disorder conceptualizations in the 2012 paper: Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67.

Apart from scrutinizing the Definition, that is all we can safely determine about the current, proposed construct of Bodily distress disorder, in the context of ICD-11’s deployment of the term, solely from the content of the public version of the Beta drafting platform.

I’ll be writing more about this Definition and the 2012 proposals by both ICD-11 working groups in the next post (Post #308).

These recent changes are a good example of why the public version of the Beta drafting platform needs to be viewed with the WHO’s caveats in mind – the draft is in a state of flux, it is incomplete, it contains errors, omissions and anomalies and is subject to frequent rejiggery.

The entry for BDD may undergo further changes over the coming year or so and following field trials evaluation.

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iCAT ICD Collaborative authoring platform:

Note that ICD Revision staff and external editors are developing the draft on a separate, multi-authoring electronic platform called “iCAT ICD Collaborative authoring tool” — a platform considerably more technically sophisticated than the version of the draft that the public sees. In the editors’ version, more Content Model parameters display and there are tabs for change histories, category notes and discussions, and for reviews of proposals. 

So revisions to category chapter locations, hierarchies, internal and external peer review of proposals, drafting and revisions of textual content and rationales for these revisions can be tracked by users of the platform with editing rights or viewing access. The absence of this level of detail in the public version of the draft makes it very difficult for stakeholders to monitor changes and rationales for changes, or to account for missing or no longer displaying category terms.

iCAT ICD Collaborative authoring platform screencast:

This link ICD-11 iCAT screencast will open a 1:55 minute animated screencast intended as a demo for iCAT users but in the public domain. It shows the iCAT platform that the Managing Editors for the various chapters of ICD-11 are developing the draft on. Note the larger number of function tabs along the top of the screen and at 17 secs in, note the larger number of Content Model tabs load under “Details for Test 1” in the category description pane, on the right.

What you see in the Beta draft is a cut down version for public viewing and public interaction that omits many of the functions and much of the detail of the ICD Revision iCAT platform.

To be continued in Post #308.

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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. [Abstract: PMID: 23244611]

2. Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res. 2010 May;68(5):415-26. [Abstract: PMID: 20403500].

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]

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