Proposals for the classification of Chronic pain in ICD-11: Part 2

Post #326 Shortlink: http://wp.me/pKrrB-48Y

Click here for Part 1

Note: Since these proposed changes for Fibromyalgia were published on the ICD-11 Beta draft, in 2015, not a single comment has been posted via the ICD-11 Comment or Proposals mechanisms from stakeholder patient organizations, the clinicians who advise them, allied health professionals or disability lawyers.

Part 2: Fibromyalgia

On May 5, 2015, the ICD-11 Beta draft category, Fibromyalgia, was deleted from the Diseases of the musculoskeletal system and connective tissue chapter and relocated under Symptoms, signs, clinical forms, and abnormal clinical and laboratory findings, not elsewhere classified (currently numbered Chapter 21 in the Beta draft).*

*Source: Fibromyalgia Change History, 05 May 2015

For ICD-11, Fibromyalgia is proposed to be listed under the Symptoms, signs chapter, under a proposed new parent category called Multi-site primary chronic pains syndromes, under new parent class, Chronic primary pain, under new parent class, Chronic pain.

No rationale for a proposed change of chapter location and parent class was recorded in the Change History at the time of the edit.

See Part 1 and the June 2015 paper A classification of chronic pain for ICD-11. Rolf-Detlef Treede, Winfried Rief et al for the IASP working group’s proposals for locating irritable bowel syndrome; chronic nonspecific back pain; chronic pelvic pain; chronic widespread pain, fibromyalgia, and potentially some other conditions where chronic pain is a feature, under proposed new disorder category, Chronic primary pain.

Some of the categories listed under the new Chronic pain parent are proposed to be secondary parented (cross-referenced) to other chapters. But it is unclear from the proposals, whether Fibromyalgia is intended to be secondary parented to the Diseases of the musculoskeletal system and connective tissue chapter or to Diseases of the nervous system, or whether some disorders categorized under Chronic primary pain disorder would have no secondary parent chapter association beyond the Symptoms, signs chapter.

ICD-11 Beta Foundation Component

In the ICD-11 Foundation Component (where all ICD-11 entities are listed), Fibromyalgia is listed under Chronic pain > Primary chronic pain > Multi-site primary chronic pains syndromes, and assigned a Definition and other Content Model descriptors**.

View the Beta draft Foundation Component here: Fibromyalgia

**The current Beta draft Definitions for Fibromyalgia do not appear to have been revised from how the text had stood prior to its chapter relocation in May 2015.

(The likely source for the text entered into the Definition and Long Definition fields is this Orphanet page, apparently last updated in May 2007, but which appends links to more recent criteria and practice guidelines.)

 

From the ICD-11 Beta draft Foundation Component (accessed August 20, 2015):

Fibromyalgia

Fibro2208152


But in the Joint Linearization for Mortality and Morbidity Statistics (JLMMS), Fibromyalgia is not proposed to be listed with a discrete code assigned but rolled up as an Inclusion term under MAOE.112 Multi-site primary chronic pains syndromes.

View the Beta draft JLMMS linearization here: Fibromyalgia

FibroJMMLS1

This screenshot shows the hover text for Inclusion term, Fibromyalgia, in the JMMLS linearization:

Fibro as inlcusion term3

ICD-11 Beta drafting platform, public version: Joint Linearization for Mortality and Morbidity Statistics. Accessed August 20, 2015.

I am not a stakeholder or advocate for Fibromyalgia or for any of the several terms proposed to be categorized under the Primary chronic pain/Chronic primary pain parent term.

Consideration of the implications for aggregating Fibromyalgia, chronic widespread pain, irritable bowel syndrome, chronic nonspecific back pain, chronic pelvic pain and some other conditions where chronic pain is a predominate feature, under a new term in the Symptoms, signs chapter, on data collection, research, commissioning of services, access to treatments, reimbursement etc. is beyond the scope of this report.

But I urge stakeholder patient organizations, the clinicians who advise them, allied health professionals, occupational therapists and disability lawyers to scrutinize the IASP Task Force paper, the Beta draft rationale and proposals documents, proposed definitions and other descriptive content and to register with the Beta draft to submit comments and make formal suggestions for improvements via the Proposal Mechanism, (supported with references, where possible).

There is a considerable amount of psychosomatics in the Detailed Proposals document for Primary chronic pain. There is disorder description and criteria overlap with ICD-11’s proposed Bodily distress disorder; with DSM-5 Somatic symptom disorder “Predominate pain” specifier; with Somatoform pain disorder and the German ICD-10-GM: F45.41: Chronic pain disorder with somatic and psychological factors – a classification which Prof Winfried Rief was instrumental in getting inserted into the German ICD-10-GM, in 2009.

Prof Winfried Rief slide presentation:

Back in 2012, Chronic pain Task Force co-chair, Prof Winfried Rief, had presented tentative ideas for potential frameworks for a new ICD-11 chapter or section for pain conditions:

2012 SIP Symposium Workshop presentation: IASP and the Classification of Pain in ICD-11

Note in Slides #12-15, a number of the so-called, functional somatic syndromes, and in Slide #15, “Chronic Fatigue Syndrome, Neurasthenia” [sic], had been floated by Prof Rief, in 2012, as potential partners in any proposed new chapter or section for chronic pain.

Key documents for scrutiny by patient organizations, clinicians and advocates

A classification of chronic pain for ICD-11 Treede R, Rief W, et al, June 2015

Detailed Rationale/proposals/criteria documents:

Chronic pain 2015-May-26 Antonia Barke

Chronic primary pain 2015-June-29 Antonia Barke

Chronic visceral pain 2015-May-26 Antonia Barke

Chronic musculoskeletal pain 2015-May-26 Antonia Barke

Current ICD-11 Beta draft location Foundation Component listing for Irritable bowel syndrome

ICD-11 Beta draft Foundation Component listing for Fibromyalgia

ICD-11 Beta draft JLMMS listing for Fibromyalgia [rolled up as Inclusion in Multi-site primary chronic pains syndromes]

Click here for Part 1

 

Further reading

Medscape article: Chronic Pain Syndrome, Manish K Singh, MD; Chief Editor: Stephen Kishner, MD, MHA, updated July 15 2015

The Changing Nature of Fibromyalgia. Frederick Wolfe and Brian Walitt


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 labels currently assigned to ICD categories may change as chapters and parent/child hierarchies continue to be reorganized. The public version of the Beta draft is incomplete: not all Content Model parameters display or have been populated; definitions may be absent, awaiting revision or subject to further revision. The draft may contain errors and category omissions.
For some categories, detailed proposals/rationales/criteria are being posted by Topic Advisory Groups (TAGs) and can be viewed via the Proposals Mechanism, for which registration is required. Additional proposals/suggestions for modifications submitted by work groups or stakeholders which are awaiting review and decisions may also be found via the Proposals Mechanism.

Proposals for the classification of Chronic pain in ICD-11: Part 1

Post #325 Shortlink: http://wp.me/pKrrB-488

Part 1

In 2013, the International Association for the Study of Pain (IASP) launched a working group tasked with developing proposals for the classification of chronic pain within ICD-11, for application in primary care, low-resource environments and clinical settings for specialized pain management.

The Classification of Chronic Pain Task Force is working under the auspices of WHO/ICD Revision. The group is co-chaired by IASP President, Prof. Dr. med. Rolf-Detlef Treede, and Winfried Rief PhD, Professor of Clinical Psychology and Psychotherapy, University of Marburg.

The working group held its first meeting in March 2013. At that point, the potential for creating a new Pain chapter  in ICD-11 was reportedly under consideration (Organizing Principles, Classifying pain for healthcare, Carol Cruzan Morton, April 2013).

But the concept of a dedicated pain chapter for ICD-11 appears to have been set aside in preference to expanding the existing Chronic pain classification within the Symptoms, signs, clinical forms, and abnormal clinical and laboratory findings, not elsewhere classified chapter (currently numbered Chapter 21 in the Beta draft).

Under this new Chronic pain disorder section, “…diagnoses in which pain is either the sole or a leading complaint of the patient will be listed.”

Additionally, chronic pain conditions considered neglected in previous ICD versions, for example, chronic cancer pain, chronic neuropathic pain and chronic visceral pain, will be represented under Chronic pain with their own codes.

A simplified version of the proposed framework for use by primary care practitioners was expected to undergo field testing in several countries. A more detailed specialty ICD-11 linearization for use by pain specialists is also envisaged.

 

What are the most recent proposals from the IASP Chronic Pain Task Force?

In March 2015, the IASP working group published a paper setting out proposals and rationales for the structure of a new Chronic pain section and the disorders classified within it.

Initially, the paper was behind a paywall, but was published under Open Access in June 2015. You can read the paper in html and PDF format here:

A classification of chronic pain for ICD-11. Rolf-Detlef Treede, Winfried Rief et al
Pain. 2015 Jun; 156(6): 1003-7. Published online 2015 Mar 14. PMCID: PMC4450869

Under the proposed framework, chronic pain will be defined as pain that persists or recurs for more than three months.

There are optional specifiers for each diagnosis for recording evidence of psychosocial factors and pain severity. Pain severity can be graded on the basis of pain intensity, pain-related distress, and functional impairment.

“Detailed Explanation of the Proposal” texts for Chronic pain and its 7 child categories have been uploaded to the ICD-11 Beta draft Proposals Mechanism on behalf of the working group.

These are important texts setting out detailed proposals, rationales and criteria and are open for review, comment and suggestions for changes, for which registration with the Beta draft is required. There are links for these texts below but for ease of reference, I am including selected of these texts in .doc format.

Proposed disorder categories

The new ICD section for Chronic pain is proposed to comprise the most common clinically relevant disorders, divided into 7 groups (Fig. 1, Treede et al, 2015).

 

Chapter 21: Symptoms, signs, clinical forms, and abnormal clinical and laboratory findings, not elsewhere classified 

General symptoms, findings and clinical forms

General symptoms

(…)

Pain

Chronic pain [Detailed Proposals] [.doc document]

Update: Proposals for Chronic pain replaced with [Detailed Proposals] Antonia Barke 17.09.15

2.1. Chronic primary pain [Detailed Proposals] [.doc document]

Subclass: Mono-site primary chronic pains syndromes [Detailed proposals not available]

Subclass: Multi-site primary chronic pains syndromes [Detailed proposals not available]

  Fibromyalgia [Detailed proposals not available]

2.2. Chronic cancer pain [Detailed Proposals]

2.3. Chronic postsurgical and posttraumatic pain [Detailed Proposals]

2.4. Chronic neuropathic pain [Detailed Proposals]

2.5. Chronic headache and orofacial pain [Detailed Proposals]

2.6. Chronic visceral pain [Detailed Proposals] [.doc document]

2.7. Chronic musculoskeletal pain [Detailed Proposals] [.doc document]

 

According to its Detailed Proposals text, Chronic primary pain is proposed to be primary parented under Chronic pain and secondary parented to Diseases of the nervous system.

Other chronic pain disorders are proposed to be primary parented under Chronic pain and secondary parented to Neoplasms, Diseases of the nervous system, Diseases of the respiratory system, Diseases of the digestive system, Diseases of the musculoskeletal system and connective tissue or Diseases of the genitourinary system, according to body system.

The “Appendix Structure of the chapter on chronic pain” (page 4 of the Treede et al paper) sets out a complex hierarchy of subclasses.

It’s not evident whether all or selected of these additional subclasses are intended to be added under the disorder categories that are currently displaying in the Beta draft, or whether additional subclasses would be reserved for use in a specialist linearization for chronic pain.

The Treede et al paper describes Chronic primary pain as:

2.1. Chronic primary pain
Chronic primary pain is pain in 1 or more anatomic regions that persists or recurs for longer than 3 months and is associated with significant emotional distress or significant functional disability (interference with activities of daily life and participation in social roles) and that cannot be better explained by another chronic pain condition. This is a new phenomenological definition, created because the etiology is unknown for many forms of chronic pain. Common conditions such as, eg, back pain that is neither identified as musculoskeletal or neuropathic pain, chronic widespread pain, fibromyalgia, and irritable bowel syndrome will be found in this section and biological findings contributing to the pain problem may or may not be present. The term “primary pain” was chosen in close liaison with the ICD-11 revision committee, who felt this was the most widely acceptable term, in particular, from a nonspecialist perspective.

and (under 2.7. Chronic musculoskeletal pain):

…Well-described apparent musculoskeletal conditions for which the causes are incompletely understood, such as nonspecific back pain or chronic widespread pain, will be included in the section on chronic primary pain.

 

Under two new terms: Mono-site primary chronic pains syndromes and Multi-site primary chronic pains syndromes the IASP working group proposes to locate irritable bowel syndrome; chronic nonspecific back pain; chronic pelvic pain; chronic widespread pain; fibromyalgia, and potentially some other conditions where chronic pain is a feature.

This “new phenomenological definition” appears to be an umbrella diagnosis for a number of the so-called, “functional somatic syndromes.”

There is a considerable amount of psychosomatics in the Detailed Proposals document for Primary chronic pain.

It is unclear whether the intention is to add discrete categories for irritable bowel syndrome; chronic nonspecific back pain; chronic widespread pain, and other diagnoses proposed to be aggregated under the Chronic primary pain term. But at the time of compiling this report, Fibromyalgia is the only term to have been inserted.

In the ICD-11 Beta draft, Irritable bowel syndrome remains at its current location in Diseases of the digestive system chapter, under Irritable bowel syndrome and certain specified functional bowel disorders.

It is therefore unclear whether the ICD-11 Revision Steering Group and the IASP working group have reached consensus over the proposed relocation of Irritable bowel syndrome to the Symptoms, signs chapter, under a new Chronic primary pain parent.

I have requested clarification of current intentions for Irritable bowel syndrome via the Proposal Mechanism comments facility but have received no response.

 

Proposed new ICD-11 categories

These are the disorder categories as currently entered into the ICD-11 Beta drafting platform under parent class: Pain > Chronic pain for the Foundation Component:

Chapter: Symptoms, signs, clinical forms, and abnormal clinical and laboratory findings, not elsewhere classified

Chronic pain 2 20.08.15

ICD-11 Beta drafting platform, public version: Foundation Component. Accessed August 20, 2015.

A note about discrepancies in terminology between ICD-11 Beta draft and the Treede et al paper: The term, Primary chronic pain, as entered into the Beta draft, is proposed to be amended to Chronic primary pain, in line with the classification structure set out in Table: Appendix Structure of the chapter on chronic pain on page 4 of the Treede et al paper.

The Beta draft’s Mono-site primary chronic pains syndromes and Multi-site primary chronic pains syndromes are termed Localized chronic primary pain (including nonspecific back pain, chronic pelvic pain) and Widespread chronic primary pain (including fibromyalgia syndrome) in the Treede et al paper.

(I have also enquired whether the Mono- and Multi-site primary chronic pains syndromes terms are to be amended to Mono- and Multi-site chronic primary pain syndromes but have received no response.)

If you are a stakeholder in any of the terms proposed to be classified under this new Symptoms, signs chapter section, please scrutinize the IASP Task Force paper and the Detailed Proposals documents and bring these proposals to the attention of your patient organizations.

 

The G93.3 legacy terms: Postviral fatigue syndrome; Benign myalgic encephalomyelitis; Chronic fatigue syndrome

I have no documentary evidence of intention to locate any of the ICD-10 G93.3 legacy terms under this proposed Symptoms, signs chapter Chronic pain > Chronic primary pain section.

WHO’s, Dr Robert Jakob, told me in June 2015 that he expects TAG Neurology to release proposals and rationales for the classification of the G93.3 legacy terms in September or December, latest. See summary of discussions with WHO personnel, June 19, 2015 http://wp.me/pKrrB-46A

Update: Since no proposals and rationales for the ICD-10 G93.3 legacy terms were released in September or December 2015, I contacted ICD’s Dr Robert Jakob. I was told on February 2, 2016 that “[ICD-11 Revsion is] still working on the extensive review and the conclusions.”

Click here for Part 2 Fibromyalgia

 


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 labels currently assigned to ICD categories may change as chapters and parent/child hierarchies continue to be reorganized. The public version of the Beta draft is incomplete: not all Content Model parameters display or have been populated; definitions may be absent, awaiting revision or subject to further revision. The draft may contain errors and category omissions.
For some categories, detailed proposals/rationales/criteria are being posted by Topic Advisory Groups (TAGs) and can be viewed via the Proposals Mechanism, for which registration is required. Additional proposals/suggestions for modifications submitted by work groups or stakeholders which are awaiting review and decisions may also be found via the Proposals Mechanism.
 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Text version

PDF version

Abstract

Purpose

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

Methods

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

Results

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

Conclusions

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

 

Final post on Dx Revision Watch

Post #294 Shortlink: http://wp.me/pKrrB-3L2

This will be the final post on Dx Revision Watch.

As from today, I am stepping back from advocacy work and from monitoring and reporting via this site.

Dx Revision Watch will remain online for the foreseeable future as a resource. Other than updating some existing posts, no new postings or reports will be added.

Before using this site or republishing content please read the Disclaimer Notes

Suzy Chapman
Dx Revision Watch

“He that reads and grows no wiser seldom suspects his own deficiency, but complains of hard words and obscure sentences, and asks why books are written which cannot be understood.”  Samuel Johnson

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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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