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

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

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

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

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

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

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

This report sets the editorial into context.

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ICD-11 PHC

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

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

A revised edition, ICD-11 PHC, is being developed for use by clinicians and (often non-specialist) health-care workers in a wide range of global primary care settings and low- and middle-income countries.

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

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

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

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

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

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Does this editorial advance our understanding of current proposals?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

With its

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

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

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The PCCG’s Bodily stress syndrome (BSS):

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

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

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

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

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

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

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

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

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How viable is BDS for incorporation into ICD-11?

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

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

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

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

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

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Proposed new classification

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

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

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

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

• unacceptability to patients and medical professionals

medico-political sensitivities

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

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

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

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

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Has Professor Fink achieved his goal?

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

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

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

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

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

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WHO on Twitter:

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

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So what has been entered into the Beta drafting platform?

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

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

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

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

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

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

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Forthcoming symposium presentation:

In September, Oye Gureje (chair ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders), will be presenting on Proposals and evidence for the ICD-11 classification of Bodily Distress Disorders, as part of series of symposia on the development of the ICD-11 chapter on mental and behavioural disorders, at the World Psychiatric Association XVI World Congress, in Madrid, Spain, 14–18 September 2014 [6].

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Field testing:

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

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Requests for clarification repeatedly stonewalled:

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

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

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

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

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

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Caveats:

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

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References:

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

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

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

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

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

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

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

 

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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

ICD-11 December Round up #1

Post #286 Shortlink: http://wp.me/pKrrB-3AJ

“The current ICD Revision Process timeline foresees that the ICD is submitted to the WHA in 2015 May and could then be implemented…experience obtained thus far, however, suggests that this timeframe will be extremely tight for paying due diligence to the work especially in terms of: appropriate consultations with expert groups; communication and dissemination with stakeholders; and sufficient time for field testing in multiple countries and settings, and carrying out the resulting edits.”   B Üstün, September 2013

In this September posting, I reported that a further extension to the ICD-11 timeline is under consideration.

This document and this slide presentation (Slides 29 thru 35) indicate that ICD-11 Revision is failing to meet development targets.

In a review of progress made, current status and timelines (document Pages 5 thru 10), Dr Bedirhan Üstün, Coordinator, Classification, Terminology and Standards, World Health Organization, sets out the options for postponement and discusses whether submission of ICD-11 for World Health Assembly approval should be delayed until 2016, or possibly 2017.

I will update as further information on any decision to extend the timeline emerges.

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Round up of ICD-11 related materials:

Slide presentation: PDF format, mostly in German

58. GMDS-Jahrestagung, Lübeck, 1.-5.9.2013: Symposium, Medizinische, Klassificationen und Termiologien Vortrag Üstün und Jakob, 5.9.2013

ICD-11 Übersicht Üstün und Jakob

Slide presentation: Slideshare format, in English

Regional Conference of the International Society for Adolescent Psychiatry and Psychology (ISAPP)

Diagnostic Classifications in the 21st Century: how can we capture developmental details Bedirhan Üstün, Coordinator, World Health Organization, November 24, 2013

Multisystem diseases and terms with multiple parents:

In 2010, ICD-11 Revision posted this Discussion Document: Multisystem Disorders, Aymé, Chalmers, Chute, Jakob.

The text sets out the feasibility, rationale for and possible scope of a new multisystem disorders chapter for ICD-11 for diseases that might belong to or affect multiple body systems.

A more recent working document (WHO ICD Revision Information Note, R Chalmers, MS docx editing format, dated 29 January 2013) updates the discussion and concludes that a majority of ICD Revision Topic Advisory Groups and experts did not agree with the recommendation to create a new Multisystem Disease Chapter for ICD-11 and that other options for accommodating diseases which straddle multiple chapters were being considered.

According to ICD-11 Beta drafting platform, the ICD-11 Foundation Component will allow for a single concept to be represented in a Multisystem Disease linearization and appear in more than one logically appropriate location. In the linearizations (e.g. Morbidity), a single concept has a single preferred location and references [to the term] from elsewhere [within the same chapter or within a different chapter] are greyed out but link to the preferred location.

For example, skin tumour is both a skin disease and a neoplasm and for ICD-11 is located under two chapters. Other diseases that are proposed to be assigned multiple parents include some eye diseases resulting from diabetes; tuberculosis meningitis (as both an infectious and a nervous system disease) and Premenstrual dysphoric disorder (PMDD), currently proposed to be dual coded under Chapter 15 Diseases of the genitourinary system under parent term, Premenstrual tension syndrome but also listed under Chapter 5 Mental and behavioural disorders under Depressive disorders.

While previous versions of ICD did not support multiple inheritance, there are already over 450 terms with multiple parents within ICD-11.

Editorial commentary, ICD-11 Neurological disorders:

J Neurol Neurosurg Psychiatry doi:10.1136/jnnp-2013-307093

The classification of neurological disorders in the 11th revision of the International Classification of Diseases (ICD-11)

Sanjeev Rajakulendran¹, Tarun Dua², Melissa Harper², Raad Shakir¹

1 Imperial College NHS Healthcare Trust, Charing Cross Hospital, London, UK; 2 Department of Mental Health and Substance Abuse, World Health Organization, Geneva, Switzerland

Published Online First 18 November 2013 [Full text behind paywall]

Abstract: http://www.ncbi.nlm.nih.gov/pubmed/24249782

Single page extract as image: http://jnnp.bmj.com/content/early/2013/11/18/jnnp-2013-307093.extract

(If a single page text file fails to load at the above link, try pasting the editorial title into a search engine and access the page from the search engine link.)

Primary Care version of ICD-11 (ICD-11-PHC):

The ICD-10-PHC is an abridged version of the ICD-10 core classification for use in primary care and low resource settings. A new edition (ICD-11-PHC) is being developed simultaneously with the core ICD-11.

For all new and revised disorders included in the ICD-11 Primary Care version there will need to be an equivalent disorder in the ICD-11 core classification.

The Mental and behavioural disorders section of ICD-11-PHC is expected to list 28 mental and behavioural disorders most commonly managed within primary care settings, as opposed to over 400 disorders in Chapter 5 of the core version.

The following ICD-10-PHC disorders are proposed to be dropped for ICD-11-PHC:

F40 Phobic disorders; F42.2 Mixed anxiety and depression; F43 Adjustment disorder;
F45 Unexplained somatic symptoms; F48 Neurasthenia; Z63 Bereavement, Source [4].

A list of the 28 proposed disorders for ICD-11-PHC, as they stood in 2012*, can be found on Page 51 of Source [5].

*This list may have undergone revision since the source published.

A new disorder term “Anxious depression” is proposed to be field tested for inclusion in ICD-11-PHC and is discussed in this recent paper by Prof, Sir David Goldberg, who chairs the Primary Care Consultation Group (PCCG) charged with the development of the primary care classification of mental and behavioural disorders for ICD-11:

Abstract: http://onlinelibrary.wiley.com/doi/10.1002/da.22206/abstract

Depression and Anxiety

DOI: 10.1002/da.22206

Review ANXIOUS FORMS OF DEPRESSION

David P. Goldberg

Article first published online: 27 NOV 2013 [Full text behind paywall]

There are further commentaries on the proposed new diagnoses of “anxious depression” and “bodily stress syndrome” in this 2012 paper:

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]

According to this earlier paper, the Primary Care Consultation Group (PCCG) was still refining a construct and criteria for its proposed new disorder category, which the group had tentatively named as “Bodily stress syndrome” (BSS).

BSS would replace ICD-10-PHC’s Unexplained somatic symptoms and Neurasthenia categories and would be located under a new disorder group section heading called “Body distress disorders,” under which would sit three other discrete disorders. See Page 51 of Source [5].

The characteristics of new disorder 15: Bodily stress syndrome (as they appeared in the paper) might be described as a mash-up between selected of the psychobehavioural characteristics that define DSM-5’s new Somatic symptom disorder (SSD) and selected of the characteristics and criteria for Fink et al’s Bodily Distress Syndrome – rather than a mirror or near mirror of one or the other.

In order to facilitate harmonization between ICD-11 and DSM-5 mental and behavioural disorders, we might envisage pressure on the group to align with or accommodate DSM-5’s new Somatic symptom disorder within any framework proposed to replace the existing ICD Somatoform disorders.

But DSM-5’s SSD and Fink et al’s BDS are acknowledged by Creed, Henningsen and Fink as divergent constructs, so this presents the groups advising ICD Revision with a dilemma if they are also being influenced to recommend a BDS-like construct.

You can compare how these two constructs differ and appreciate why it may be proving difficult to convince ICD Revision of the utility of the PCCG’s BSS construct (and the potential for confusion where different constructs bear very similar names) in my table at the end of Page 1 of this Dx Revision Watch post:

BDS, BDDs, BSS, BDD and ICD-11, unscrambled

Marianne Rosendal (member of the ICD-11 Primary Care Consultation Group; member of WONCA International Classification Committee), Fink and colleagues are eager to see their Bodily distress syndrome construct adopted by primary care clinicians and incorporated into management guidelines and revisions of European classification systems 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). See graphics at end of post.

While Fink et al’s BDS construct seeks to capture somatoform disorders, pain disorder, neurasthenia and the so-called functional somatic syndromes under a single, unifying diagnosis, it is unclear from the 2012 Lam et al paper whether and how the so-called functional somatic syndromes are intended to fit into the Primary Care Consultation Group’s proposed ICD-11 framework.

While the paper does list some exclusions and differential diagnoses, it lists no specific exclusions or differential diagnoses for FM, IBS or CFS and it is silent on the matter of which of the so-called functional somatic syndromes the group’s proposed new BSS diagnosis might be intended to be inclusive of, or might intentionally or unintentionally capture.

Nor is it discussed within the paper what the implications would be for the future classification and chapter location of several currently discretely coded ICD-10 entities, if Bodily stress syndrome (or whatever new term might eventually be agreed upon) were intended to capture all or selected of FM, IBS, CFS and (B)ME – the sensitivities associated with any such proposal would not be lost on Prof Goldberg which possibly accounts for the lacunae in this paper.

Lack of consensus between the two groups advising ICD-11:

The second working group advising ICD-11 on the revision of ICD-10’s Somatoform disorders is the WHO Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG).

In late 2012, their emerging construct (also published behind a paywall) had considerably more in common with DSM-5’s SSD construct than with Fink et al’s BDS (see: BDS, BDDs, BSS, BDD and ICD-11, unscrambled).

But the S3DWG’s construct Bodily distress disorder (BDD) and Severe bodily distress disorder are yet to be defined and characterised in the public version of the ICD-11 Beta draft.

It remains unknown whether the two groups making recommendations for the revision of ICD-10’s Somatoform disorders have reached consensus over what definition and criteria WHO intends to field trial over the next year or two and what this proposed new diagnosis should be called; whether their proposed BDD/BSS/WHATEVER construct will have greater congruency with DSM-5’s SSD or with Fink et al’s BDS, or what patient populations this new ICD construct is intended to include and exclude.

The absence of information on proposals within the Beta draft, itself, and the lack of working group progress reports placed in the public domain presents considerable barriers for stakeholder comment on the intentions of these two groups and renders threadbare ICD-11’s claims to be an “open” and “transparent” and “inclusive” collaborative process.

Two further papers relating to “Medically unexplained symptoms,” “Bodily distress syndrome” and “Somatoform disorders”:

http://www.sciencedirect.com/science/article/pii/S0163834313002533

General Hospital Psychiatry

Psychiatric–Medical Comorbidity

Is physical disease missed in patients with medically unexplained symptoms? A long-term follow-up of 120 patients diagnosed with bodily distress syndrome

Elisabeth Lundsgaard Skovenborg, B.Sc., Andreas Schröder, M.D., Ph.D.

The Research Clinic for Functional Disorders and Psychosomatics, Aarhus University Hospital, Denmark

Available online 22 October 2013 In Press, Corrected Proof [Full text behind paywall]

http://www.systematicreviewsjournal.com/content/2/1/99

Systematic Reviews 2013, 2:99 doi:10.1186/2046-4053-2-99

Barriers to the diagnosis of somatoform disorders in primary care: protocol for a systematic review of the current status

Alexandra M Murray¹²*, Anne Toussaint¹², Astrid Althaus¹² and Bernd Löwe¹²

1 Department of Psychosomatic Medicine and Psychotherapy, University Medical Center Hamburg-Eppendorf, Hamburg, Germany

2 University Hospital of Psychosomatic Medicine and Psychotherapy, Schön Clinic Hamburg-Eilbek, Hamburg, Germany

Published: 8 November 2013

[Open access article distributed under the terms of the Creative Commons Attribution License]

Finally, brief summaries of selected of the workshops held at the European Association for Consultation-Liaison Psychiatry and Psychosomatics (EACLPP) 2012 Conference, including workshops on “functional disorders and syndromes” and “Bodily distress,” one of which included:

http://www.eaclpp-ecpr2012.dk/Home/DownloadWorkshop

“…brief presentations which describe the present state of the proposed changes to Primary care classifications (ICPC and ICD for primary care) (MR) and DSM-V and ICD-11 (FC).”

where presenter “MR” is Marianne Rosendal; “FC” is Francis Creed, member of the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG).

Note: ICPC-2 used in primary care is also under revision.

Foreslået ny klassifikation (Suggested new classification, Fink et al): 

Source Figur 1: http://www.ugeskriftet.dk/LF/UFL/2010/24/pdf/VP02100057.pdf

Danish Journal paper Fink P

Fink: Proposed New Classification

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References

1. WHO considers further extension to ICD-11 development timeline

2. Committee for the Coordination of Statistical Activities, Twenty-second Session 4-6 September 2013, Items for discussion and decision: Item 8 of the provisional agenda, 3 September 2013 Full document in PDF format

3. Slide presentation: ICD Revision: Where are we? What remains to be done? Shall we have ICD WHA submission in 2015 or later? Bedirhan Ustun, World Health Organization Classifications, Terminologies, Standards, ICD Revision: Quality Safety Meeting 2013, September 9-10, 2013 http://www.slideshare.net/ustunb/icd-2013-qs-tag-26027668

4. Goldberg, D. Guest editorial. A revised mental health classification for use in general medical settings: the ICD11–PHC 1. International Psychiatry, Page 1, February 2011. http://www.rcpsych.ac.uk/pdf/IPv8n1.pdf

5. 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

Compiled by Suzy Chapman for Dx Revision Watch
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