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.

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.

+++
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.

References for intention not to retain Neurasthenia for ICD-11

Post #319 Shortlink: http://wp.me/pKrrB-439

When ICD-10 was completed in 1992, Chapter V Mental and behavioural disorders retained the disorder category term, Neurasthenia, coded at F48.0.

This is how Neurasthenia is listed within ICD-10:

F48.0 Neurasthenia (with Fatigue syndrome as inclusion term).

 

Neurasthenia and ICD-10-CM

The forthcoming U.S. specific ICD-10-CM inherits Neurasthenia in Chapter 5 Mental, Behavioral and Neurodevelopmental disorders (F01–F99). But here, it is coded under F48.8, owing to the different coding arrangement for the F48–F48.9 entities within ICD-10-CM.

This is how Neurasthenia is listed in the ICD-10-CM Tabular List release for FY 2015*

Neurasthenia ICD-10-CM

*Although the FY 2015 ICD-10-CM is now available for public download and viewing, the codes in ICD-10-CM are not currently valid for any purpose or use until implementation date is reached.

 

Neurasthenia and DSM

There was no discrete category for Neurasthenia within DSM-IV or DSM-IV-TR; nor within DSM-5, which published in May 2013.

 

Neurasthenia and ICD-11 and ICD-11-PHC

I reported in 2012 that for ICD-11 and ICD-11-PHC, the intention is not to retain Neurasthenia.

Here are the 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]

On Page 563 of this review paper, the authors state that a major highlight of the proposals of the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (the S3DWG sub working group) 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 the proposed name of “Bodily distress disorder” (BDD).

For ICD-11-PHC (the abridged version of ICD for use in primary care and low resource settings), it is also the intention not to retain the primary care disorder category F48 Neurasthenia.

Here are the references for the primary care version:

International Psychiatry, Issue 1 Feb 2011, Royal College of Psychiatrists
http://www.rcpsych.ac.uk/pdf/IPv8n1.pdf

Page1: Box 1 The 26 conditions included in ICD10-PHC

F45 Unexplained somatic complaints*
F48 Neurasthenia*

*Not to be included in ICD11-PHC

Neurasthenia Box 1

See also:

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.
Sample Chapter 2: http://samples.jbpub.com/9781449627874/Chapter2.pdf
Publication date: August, 2012: http://www.jblearning.com/catalog/9781449627874/

See Page 51: Table 2.5 The 28 Disorders Proposed for ICD11-PHC

Note: If you compare the list of proposed disorders for the ICD-11 primary care version, as listed in the February 2011 International Psychiatry article (on Page 2, Box 2 The 28 disorders to be field tested for ICD11-PHC), with Table 2.5, above, you will note that some proposed disorder names, disorder groupings and disorder group headings have been revised since the article in International Psychiatry. Prof Goldberg has clarified that the iteration published in the sample book chapter was the more recent of the two, cf:

February 2011 iteration:

Body distress disorders

16 Bodily distress syndrome (new – was unexplained somatic complaints)
17 Health preoccupation (new)
18 Conversion disorder (was dissociative disorder)

 

Sample chapter (2012) iteration:

Body distress disorders

15 Bodily stress syndrome
16 Acute stress reaction
17 Dissociative disorder
18 Self-harm

This list of disorder proposals and groupings may have undergone further revision since publication of 21st Century Global Mental Health. But no progress reports have emerged on behalf of the Primary Care Consultation Group (PCCG) setting out more recent proposals for their “Bodily stress syndrome” construct since the Lam et al (July 2012) paper [1].

The disorder term and construct that is entered into the ICD-11 Beta draft and defined with three severities, is the S3DWG group’s conceptually different, but similarly named construct, Bodily distress disorder (BDD).

The ICD-11 S3DWG group is advising ICD Revision in parallel with the PCCG on a potential replacement for the ICD-10 Somatoform disorders.

It is the case, however, that some professional and consumer stakeholders are unaware that are two groups advising on the revision of the Somatoform disorders, that there have been two sets of proposals presented, or how they differ in conceptualization.

Four revised definition texts were submitted to the Proposals List on behalf of Mental Health TAG for “Bodily distress disorder (BDD)” on January 9–11, which will be the subject of a future post.

 

Further evidence of intention for Neurasthenia and ICD-11

In mid 2012, Neurasthenia was removed from the ICD-11 Beta draft and subsumed (along with the F45.0–F45.9 category terms) by the S3DWG’s new single diagnostic category, “Bodily distress disorder.”

However, a couple of redundant listings for Neurasthenia as an exclusion term remained in the Beta draft as legacy text from ICD-10, under Exclusions to Fatigue (Symptoms and signs chapter) and Generalized anxiety disorder (Mental and behavioural disorders chapter).

The deletion of Neurasthenia as an exclusion term to Fatigue has now been attended to.

The following proposal has been submitted via the Proposals facility on behalf of Mental Health TAG to address the legacy listing that remains under Generalized anxiety disorder and this provides additional and contemporary evidence of intention not to retain Neurasthenia as a disorder term for ICD-11:

Proposals List

Content Enhancement Proposal

Exclusion to Generalized anxiety disorder

neurasthenia

Submitted

Neurasthenia is not recommended for retention as a disorder category in ICD-11. Therefore, this exclusion term is not longer necessary.

–On behalf of Mental Health TAG

Geoffrey Reed 2015-Jan-09 – 10:09 UTC

 

If the concept is not retained in ICD-11, then the concept would be marked as obsolete rather than deleted. Thank you!

M. Meri Robinson Nicol 2015-Jan-26 – 13:14 UTC

 

References

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

Briefing paper on ICD-11 and PVFS, ME and CFS: Part 2

Post #316 Shortlink: http://wp.me/pKrrB-41q

Update: With regard to a new parent class: Functional clinical forms of the nervous system proposed for inclusion within the ICD-11 Diseases of the nervous system (Neurology) chapter, see Stone et al paper:

Functional disorders in the Neurology section of ICD-11: A landmark opportunity

Jon Stone, FRCP, Mark Hallett, MD, Alan Carson, FRCPsych, Donna Bergen, MD and Raad Shakir, FRCP

Neurology December 9, 2014 vol. 83 no. 24 2299-2301

doi: 10.1212/WNL.0000000000001063

Full free text:

http://www.neurology.org/content/83/24/2299.long

Full free PDF:

http://www.neurology.org/content/83/24/2299.full.pdf+html

 

As previously posted:

Part two of a three part report on the status of ICD-11 proposals for the classification of the three ICD-10 entities:

G93.3 Postviral fatigue syndrome (coded under parent class G93 in Tabular List)

Benign myalgic encephalomyelitis (inclusion term to G93.3 in Tabular List)

Chronic fatigue syndrome (indexed to G93.3 in Volume 3: Alphabetical Index)

 

Part 1: Status of the ICD-11 development process published September 29, 2014

 

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

Seven years into the development process and it’s still not known how ICD-11 intends to classify the three G93.3 terms.

Sub working groups were formed under TAG Neurology with responsibility for the restructured disease and disorder blocks proposed for ICD-11’s Diseases of the nervous system chapter.

It hasn’t been established which of the various sub working groups has responsibility for making recommendations for the revision of the G93.3 terms or who the members of the subgroup(s) and its external advisers are.

Neurology Topic Advisory Group (TAG) sub working groups:

Neurology TAG sub working groups

Source: Slide #16: Summary of progress, Neurology Advisory Group, Raad Shakir (Chair): http://www.hc2013.bcs.org/presentations/s1d_thu_1530_Shakir_amended.ppt

 

No journal papers, editorials, presentations or public domain progress reports have been published, to date, on behalf of TAG Neurology that discuss emerging proposals or intentions for the classification of the three G93.3 terms for ICD-11.

The public version of the Beta drafting platform displays no editing change histories or category notes. Until the three terms have been restored to the Beta draft the public is reliant on what information WHO/ICD Revision chooses to disclose, which thus far, has been minimal.

Currently, there is no information within the Beta draft for proposals for these three terms. The continued absence of these terms from the draft (now missing for over 18 months) is hampering professional and public stakeholder scrutiny, discourse and comment.

This is not acceptable for any disease category given that ICD Revision is being promoted by WHO’s, Bedirhan Üstün, as an open and transparent process and inclusive of stakeholders.

This next section summarizes the most significant changes since May 2010 for several iterations of the Neurology chapter, during the Alpha and Beta drafting phases, as displayed in the public version of the draft.

 

Tracking the progression of the G93.3 terms through the Alpha and Beta drafting stages

In May 2010: the ICD-10 G93 legacy parent class: Other disorders of brain was retired and a change in hierarchy for class Postviral fatigue syndrome recorded. See Notes Tree screenshot [12].

A Definition was inserted for Chronic fatigue syndrome. See Change history screenshot [13].

Chronic fatigue syndrome replaced Postviral fatigue syndrome as the new ICD Title term and now sat directly under parent class: Other disorders of the nervous system.

Benign myalgic encephalomyelitis was specified as an Inclusion term under Synonyms to new ICD Title term: Chronic fatigue syndrome. See Alpha draft screenshot [14].

Postviral fatigue syndrome was at that point unaccounted for in the Alpha draft.

By July 2012: 13 additional terms were now listed under Synonyms, including Postviral fatigue syndrome, and two terms imported from the yet to be implemented, ICD-10-CM (the ICD-10-CM Chapter 18 R53.82 codes: chronic fatigue syndrome nos and chronic fatigue, unspecified).

The Definition field was now blanked.

At this point, ICD Title term: Chronic fatigue syndrome was no longer displaying as a child category directly under parent class: Other disorders of the nervous system.

The listing for Chronic fatigue syndrome now appeared under a new “Selected Cause” subset, which displayed as a sub linearization within the Foundation Component. The purpose of this subset, which aggregated many terms from Neurology and other chapters, was not evident from the Beta draft.

By November 2012: ICD Revision had re-inserted a scrappy, revised Definition for Chronic fatigue syndrome. I have sourced this draft definition to an internal ICD Revision/Stanford Protege document (line 1983):

Chronic fatigue syndrome is characterized by extreme chronic fatigue of an indeterminate cause, which is disabling andt [sic] does not improve with rest and that is exacerbated by physical or mental activity.

 

Below is a screenshot from the Beta draft taken in July 2012, before a Definition for Title term, Chronic fatigue syndrome had been re-inserted.

(It isn’t evident in the screenshot, but the asterisk at the end of Benign myalgic encephalomyelitis displayed a hover text denoting its specification as the Inclusion term to ICD Title term, Chronic fatigue syndrome. Also not evident in this cropped screenshot is the listing of Postviral fatigue syndrome under Synonyms.)

July2512

Source: ICD-11 Beta drafting platform, July 25, 2012.

This “Selected Cause” sub linearization was later removed from the public Beta draft and some of the terms that had been listed under it were restored to the Neurology chapter and to other chapters. But ICD Title term, Chronic fatigue syndrome, its Inclusion term and list of Synonyms were not restored to any chapter.

Since February 2013: no listing can be found in any chapter of the public version of the Beta draft, under any linearization, for any of the terms, Postviral fatigue syndrome, Benign myalgic encephalomyelitis or Chronic fatigue syndrome, as uniquely coded ICD Title terms, or as Inclusion terms or Synonyms to Title terms, or in the ICD-11 Beta Index.

Since June 2013: My repeated requests for an explanation for the absence of these three terms from the Beta draft and for ICD Revision’s intentions for these terms were ignored by ICD Revision until July 2014, when a response was forthcoming from ICD Revision’s, Dr Geoffrey Reed.

(It is understood that Annette Brooke MP also received a response, in July, from WHO’s, Dr Robert Jakob, in respect of the joint organizations’ letter of March 18, for which Ms Brooke had been a co-signatory.)

 

What clarifications have been given?

Feb 12, 2014: An unidentified admin for the @WHO Twitter account replied to a member of the public: “Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11.” A similar affirmation was tweeted by Gregory Hartl, head of public relations/social media, WHO.

 

July 24, 2014: Geoffrey Reed PhD (Senior Project Manager for revision of Mental and behavioural disorders) replied to Suzy Chapman, by email:

Dr Reed stated inter alia that the placement of ME and related conditions within the broader classification is still unresolved.

That he had no influence or control over this process; his authority being limited to coordinating recommendations related to conditions that should or should not be placed in the chapter on Mental and behavioural disorders.

That there has been no proposal and no intention to include ME or other conditions such as fibromyalgia* or chronic fatigue syndrome in the classification of mental disorders.

That the easiest way to make this absolutely clear will be through the use of exclusion terms. However, he would be unable to ask that exclusion terms are added to relevant Mental and behavioural disorders categories (e.g. Bodily Distress Disorder) until the conditions that are being excluded exist in the classification. That at such time, he would be happy to do that.

That since his purview does not extend to the section on classification of Diseases of the nervous system or other areas outside the Mental and behavioural disorders chapter, he was unable to provide any information related to how these conditions will be classified in other chapters.

That he was unable to comment about the management of correspondence by other TAG groups and signposted me to Dr Robert Jakob [the senior classification expert who had been copied into the joint organizations’ letter to WHO/ICD Revision, in March] whose role relates to the overall coordination of the classification.

 

*Fibromyalgia remains classified under ICD-11 Beta draft public version chapter “Diseases of the musculoskeletal system and connective tissue” under parent: Certain specified soft tissue disorders, not elsewhere classified.

Irritable bowel syndrome remains classified under ICD-11 Beta draft public version chapter “Diseases of the digestive system” under: Functional gastrointestinal disorders > Irritable bowel syndrome and certain specified functional bowel disorders.

 

In August, I submitted two FOI requests, one to the Scottish Health Directorate, one to the English Department of Health. The latter was not deemed specific enough in terms of named health agencies for a response to be generated and will require resubmission.

September 24, 2014: FOI request fulfilled by (SCOTLAND) ACT 2002 (FOISA), received from David Cline, Unit Head, Strategic Planning and Clinical Priorities Team, by email: 

The Quality Unit: Health and Social Care Directorates
Planning & Quality Division

[Addresses redacted]

Your ref:  FoI/14/01460

24 September 2014

REQUEST UNDER THE FREEDOM OF INFORMATION (SCOTLAND) ACT 2002 (FOISA)

Thank you for your request dated 27 August 2014 under the Freedom of Information (Scotland) Act 2002 (FOISA)…

 

Your request

Under the Freedom of Information (Scotland) Act 2002, please provide the following.

Please send me copies of all correspondence, emails, letters, minutes relating to:

Enquiries made by Scottish Health Directorate to World Health Organization (WHO), 20 Av Appia, CH-1211, Geneva, in respect of:

Classification of the three ICD-10 (International Classification of Diseases 10th edition) G93.3 coded disease terms in the forthcoming revision of ICD-10, to be known as ICD-11:

Postviral fatigue syndrome (Post viral fatigue syndrome; PVFS)

Benign myalgic encephalomyelitis (myalgic encephalomyelitis; myalgic encephalitis; ME);

Chronic fatigue syndrome (CFS; CFS/ME, ME/CFS)

During the period:

1] January 1, 2013 – December 31, 2013

2] January 1, 2014 – July 31, 2014

I also request copies of responses received from WHO in reply to enquiries made by Scottish Health Directorate during these periods in respect of the above ICD disease categories.

 

Response to your  request

Information held covering the time period indicated relates to an email exchange on 11 and 12 March 2014 as part of a request for advice in answering Ministerial correspondence.

On 11 March the World Health Organisation WHO were asked “I would be very grateful for your help in confirming the status of an element within the WHO’s ICD 11 regarding ME/CFS. On 25th February in the UK parliament, the Under-Secretary of State for Health informed the UK parliament that the WHO had publicy stated that there was no proposal  to reclassify ME/CFS in ICD-11…I would be very grateful if you can confirm that this is the case and if possible, provide a web link to the original wording so I can include this within the correspondence I am preparing”.

The WHO responded on 12 March; “The question regarding MS/CFS [sic] and ICD-11 has been asked recently by several different parties. At this point in time, the ICD-11 is still under development, and to handle this classification issue we will need more time and input from the relevant working groups. It would be premature to make any statement on the subject below.

The general information on ICD Revision can be accessed here: http://www.who.int/classifications/icd/revision/. The current state of development of ICD-11 (draft) can be viewed here (and comments can be made, after self registration): http://www.who.int/classifications/icd11 ”.

A further email on 12 March to the WHO asked; “It would be fair to say then …that work will continue on the draft with an expected publication in 2015?”.

WHO responded on 12 March; “Work on the draft will continue until presentation at the World Health Assembly in 2017. Before, reviews and field testing will provide input to a version that is available for commenting, as much as possible and proposals can be submitted online* with the mechanisms provided already.”

*Since the three terms are currently not accounted for within the Beta draft this impedes the submission of comments.

 

This is the sum total of what has been disclosed by WHO/ICD Revision in respect of current proposals for the classification of the three ICD-10 G93.3 terms, despite the fact that ICD-11 has now been under development for 7 years, and prior to the timeline extension in January 2014, the new edition had been scheduled for WHA approval and dissemination in 2015.

 

What might the working group potentially be considering? 

  • The terms may have been removed from the draft in order to mitigate controversy over a proposed change of chapter location, change of parent class, reorganization of the hierarchy, or over the wording of Definition(s). (Whether a term is listed as a coded Title term, or is specified as an Inclusion term to a coded term or listed under Synonyms to a coded term, dictates which of the terms is assigned a Definition. If, for example, CFS and [B]ME were both coded as discrete ICD Title terms, both terms will require the assigning of Definitions and other Content Model descriptors.)
  • TAG Neurology may be proposing to retain all three terms under the Neurology chapter, under an existing parent class that is still under reorganization, and has taken the three terms out of the linearizations in the meantime, or is proposing to locate one or more of the terms under a new parent class for which a name and location has yet to be agreed.
  • TAG Neurology may be proposing to locate one or more of these terms under more than one chapter, for example, under the Neurology chapter but dual parented under the Symptoms and signs chapter. Or multi parented and viewable under a multisystem linearization, if the potential for a multisystem linearization remains under discussion.
  • TAG Neurology may be proposing to retire one or more of these three terms (despite earlier assurances by senior WHO classification experts) but I think this unlikely. ICD-11 will be integrable with SNOMED CT, which includes all three terms, albeit with ME and BME listed as synonyms to coded CFS, with PVFS assigned a discrete SNOMED CT code.
  • Given the extension to the timeline, TAG Neurology may be reluctant to make decisions at this point because it has been made aware of the HHS contract with U.S. Institute of Medicine (IOM) to develop “evidence-based clinical diagnostic criteria for ME/CFS” and to “recommend whether new terminology for ME/CFS should be adopted.” Any new resulting criteria or terminology might potentially be used to inform ICD-11 decisions.

Other possibilities might be listing one or more of these terms under parent class, Certain specified disorders of the nervous system or under Symptoms, signs and clinical findings involving the nervous system, which is dual parented under both the Neurology chapter and the Symptoms and signs chapter.

All currently listed parent and child categories within the Neurology chapter can be viewed here:

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

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

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1296093776

 

There is a new parent class proposed for the ICD-11 Neurology chapter called, Functional clinical forms of the nervous system, which Dr Jon Stone has been working on [15] [17].

Under this new Neurology chapter parent class, it is proposed to relocate or dual locate a list of “functional disorders” (Functional paralysis or weakness; Functional sensory disorder; Functional movement disorder; Functional gait disorder; Functional cognitive disorder etc.) which in ICD-10 are classified under the Chapter V Dissociative [conversion] disorders section.

The rationale for this proposed chapter shift for Conversion disorders/functional disorders is beyond the scope of this briefing paper.

In a 2013 editorial, Prof Raad Shakir (Chair, TAG Neurology) briefly discusses the proposed reorganization of what he calls the “rag bag of diverse and disparate diseases” that is parent class, Other disorders of the nervous system [16].

He writes, “In addition, there will also be a section on Functional disorders of the nervous system, reflecting the growing diagnostic importance of such syndromes.” 

It’s not clear whether this reference, in 2013, to the inclusion of a new section for “Functional disorders of the nervous system” within the Neurology chapter relates to the relocation or dual location of those “functional disorders” currently classified under Dissociative [conversion] disorders within ICD-10 Chapter V, or whether Prof Shakir was referring to potential inclusion within the Neurology chapter of a section for “Functional somatic syndromes.” But I consider the former more likely.

There is currently no inclusion within any chapter for a specific parent class for “Functional somatic syndromes,” or “Functional somatic disorders” or “interface disorders” under which, conceivably, those who consider CFS, ME, IBS and FM to be “speciality driven” manifestations of a similar underlying functional disorder might be keen to see these terms aggregated.

I shall return to the subject of “interface disorders” in Part 3.

 

There remain 6 important questions to be answered:

• under which chapter(s) are PVFS, BME and CFS proposed to be located?
• under which parent classes?
• what hierarchies are proposed, in terms of coded Title terms, Inclusions, Synonyms?
• which of the terms are to be assigned definitions?
• where will definitions be sourced from?
• when will the terms be restored to the draft to enable scrutiny and comment?

 

Extract, ICD-11 document Known Concerns and Criticisms:

“It may be true that some advocacy groups may give inputs in line with their vested interests or object to the listings in ICD-11 Beta. When such public controversy occurs, it is better to have it in an open and transparent discussion…”

Having obscured these terms from the Beta drafting platform eighteen months ago, with no explanation, ICD Revision Steering Group and TAG Neurology, which are both accountable to WHO, have disenfranchised professional and advocacy stakeholders from scrutiny of, and participation in what is being touted as an open and transparent process.

For Part 1 of this briefing document: Part 1: Status of the ICD-11 development process

In Part 3, I shall be setting out what is currently known about the status of proposals for the revision of ICD-10’s Somatoform disorders for the core and primary care versions of ICD-11.

 

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

 

References for Part 2

12 https://dxrevisionwatch.files.wordpress.com/2010/05/2icatnotegj92cfs.png

13 https://dxrevisionwatch.files.wordpress.com/2011/02/change-history-gj92-cfs.png

14 https://dxrevisionwatch.files.wordpress.com/2011/05/icd11-alpha1-17-05-11.png

15 http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f1614846095

16 Shakir R, Rajakulendran, S. The 11th Revision of the International Classification of Diseases (ICD) The Neurological Perspective JAMA Neurol. 2013;70(11):1353-1354. http://archneur.jamanetwork.com/article.aspx?articleid=1733323

17 Functional neurological disorders: The neurological assessment as treatment. Stone J. Neurophysiol Clin. 2014 Oct;44(4):363-73 http://www.ncbi.nlm.nih.gov/pubmed/25306077

Briefing paper on ICD-11 and PVFS, ME and CFS: Part 1

Post #315 Shortlink: http://wp.me/pKrrB-40E

 

Part one of a three part report on the status of ICD-11 proposals for the classification of the three ICD-10 entities:

G93.3 Postviral fatigue syndrome (coded under parent class G93 in Tabular List)

Benign myalgic encephalomyelitis (inclusion term to G93.3 in Tabular List)

Chronic fatigue syndrome (indexed to G93.3 in Volume 3: Alphabetical Index)

 

Part 1: Status of the ICD-11 development process

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

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

 

Part 1: Status of the ICD-11 development process

The revision of ICD-10 and development of the structure for ICD-11 began in April 2007.

ICD-11 was originally planned for completion by 2012, but the timeline was extended to 2015 early in the development process.

In January 2014, WHO/ICD Revision extended the timeline by a further two years to allow more time for generation of content, peer review, field testing and evaluation, translations and transition preparations [1].

The current projected date for approval by the World Health Assembly (WHA) is May 2017 with implementation timelined for 2018+.

In July 2014, WHO issued a call for expressions of interest in a contract for an external interim assessment of the revision process. Due date for the assessment report is December 15, 2014. It is not known whether WHO intends to publish a summary of the external assessment report.

Once ICD-11 is ready for dissemination, WHO Member States will transition to the new edition at their own pace. There is no WHO mandated date by which ICD-11 must be implemented, but WHO has said that it won’t support the annual updating of ICD-10 indefinitely. Developing and low resource countries may take many years before migrating to ICD-11.

 

Print and electronic versions

The scope of the revision project is ambitious and technically very complex. The project is under-resourced and underfunded and there is no overall project manager. Work groups have complained about the burden of work and poor internal communications.

There will be an ICD-11 print edition and a more expansive computerized version planned to be integrable with the international SNOMED CT terminology system.

The electronic version has a Foundation Component which includes all the ICD-11 diagnostic categories arranged in hierarchical “trees.”

From the Foundation Component, subsets (known as “linearizations”) are derived that contain mutually exclusive lists of terms for different purposes, e.g. for mortality, morbidity or primary care.

There are anticipated to be linearizations for mental and behavioural disorders, low resource and high resource primary care settings, rare diseases and occupational health and speciality classifications, including neurology, paediatrics, ophthalmology and dermatology.

The public version of the Beta drafting platform currently displays only the Foundation Component and a Joint Linearization for Mortality and Morbidity Statistics.

The country specific “Clinical Modifications” of ICD-10, including the U.S.’s forthcoming ICD-10-CM, are expected to be incorporated into ICD-11, as linearizations, as is ICPC-2.

The development process is overseen by a Revision Steering Group (RSG) chaired by biomedical informatics expert, Christopher Chute, MD, Mayo Clinic, Rochester, MN [2].

 

Primary Care version

An abridged version of the core ICD-11 for use in primary care and low resource settings, known as ICD-11-PHC, is being developed simultaneously with the core version.

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

 

Work Groups

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

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

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

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

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

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

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

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

 

Differences between ICD-10 and ICD-11

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

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

 

Multiple parents and multisystem diseases

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

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

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

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

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

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

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

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

 

The Content Model

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

 

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

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

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

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

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

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

 

How can stakeholders participate?

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

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

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

Registered stakeholders are permitted to:

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

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

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

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

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

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

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

 

Where to view the Beta drafting platform

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

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

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

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

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

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

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

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

 

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

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

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

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

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

iCAT editing platform 3

 

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

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

 

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

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

 

References for Part 1

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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BDD310714

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

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Summary of responses from Dr Geoffrey Reed, WHO

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

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

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

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

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

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

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

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Dr Reed provided the following information on July 24:

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

There has been no proposal and no intention to include ME or other conditions such as fibromyalgia or chronic fatigue syndrome in the classification of mental disorders.

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

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

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

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

That he considers my analysis is accurate.

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

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

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

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

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

Dr Reed’s purview does not extend to the section on classification of Diseases of the nervous system or other areas outside the Mental and behavioural disorders chapter, and is therefore unable to provide any information related to how these conditions will be classified in other chapters***.

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

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Footnotes:

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

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

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

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

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

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

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

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

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

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

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

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

The joint letter can be read here:

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

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

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

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

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Forthcoming Symposium:

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

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References:

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

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

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

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

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