The WHO Somatisation Project [CISSD Project]: The Elephant in the Room Part Ten

elephant3

Image | belgianchocolate | Creative Commons

The Elephant in the Room Part Ten

The WHO Somatisation Project [CISSD Project]

[This report may be republished as long as it is republished in its entirety, unchanged and with the author and source acknowledged. Embedded links may drop out.]

http://tinyurl.com/elephantpart-ten

Update: 11 March 2009

 

Keywords

APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

 

1] Action for M.E. appears to be the only organisation that refers to the CISSD Project as the “WHO Somatisation Project” [1]. This is confusing and obscures the fact that although the Review paper authored by the CISSD Project leads was submitted to the WHO and that proposals have also been submitted to the WHO ICD Update and Revision Platform by Dr Richard Sykes [2], the 2006 CISSD Project Workshops “…brought together American and European experts to further consider the key questions and potential changes to be addressed in any revision of the Somatoform Disorders category, with the explicit aim of informing the development of DSM-V” and the Review paper, itself, is DSM-V-centric [3]. Future reports will use only the Project’s formal name.

2] There have now been ten reports in this series. New reports and updates will be published under the post heading: The Elephant in the Room: Series 2: xxxxx.

3] For ease of reference, previous reports and new material will be collated under a new DSM-V Directory Tab.  A Directory of key links and documents will provide a resource for information and commentary around the APA DSM-V Revision Process, the WHO Revision of ICD-10 Mental and Behavioural Disorders (as part of the overall revision of ICD-10) and the DSM/ICD “Harmonization Process” – the aim of which is to “facilitate uniformity and harmonization” between ICD-11 mental and behavioural disorders and DSM-V.

The URL for the DSM-V Directory will be:

https://meagenda.wordpress.com/dsm-v-directory/  or  http://tinyurl.com/dsm-vdirectory

4] Freedom of Information requests: An information request under FOI has been submitted to the University of Edinburgh to establish the total amount of funding provided by The Wellcome Trust for, or in the name of the CISSD Project and the purpose for which funding was provided; this request is expected to be fulfilled on or before 18 March.  Requests for information under FOI have been submitted to the Institute of Psychiatry for clarification of the relationship between Dr Richard Sykes and the WHO Collaboration Centre; between the CISSD Project and the WHO Collaboration Centre; the involvement of Prof Rachel Jenkins in the CISSD Project and for other information relating to the business of the Project; this request is expected to be fulfilled within 20 working days.  Copies of these FOI requests will be placed in the DSM-V Directory in due course.

5] Correspondence with Dr Richard Sykes: On 26 February, I wrote to Dr Sykes requesting clarification of statements he had made in relation to WHO classifications and raising questions around the business of the CISSD Project. Dr Sykes responded that he has suggested to Action for M.E. that an article is published in InterAction magazine about the CISSD Project, that he is waiting on a decision from Action for M.E. and that he feels an article could well clear up many of the queries which I had raised with him.

In response, I told Dr Sykes that I had already been advised by Action for M.E.’s Finance Manager that there is no longer anyone on the staff who had had any involvement with the Project…that if Action for M.E. were to agree to his suggestion, that many within the ME community, members and non members, would consider that an article from Action for M.E. setting out the nature and objectives of the CISSD Project, its sources of funding, the names of the members of the Project Work Group and the business of the Project was long overdue and that I would welcome this myself. However, I questioned whether a general article written up by AfME would adequately answer the type of queries I had raised with Dr Sykes and that, in any case, the next issue of InterAction magazine was not due for publication for several months. I advised Dr Sykes that I should be pleased if he would provide answers to these questions, himself.  I have heard nothing further from him. 

A copy of the questions put to Dr Sykes can be read in The Elephant in the Room Part Nine. As the Co-ordinator of a Project undertaken in the name of the ME and CFS community, there is an expectation that Dr Sykes will be prepared to be accountable and transparent to the Project’s stakeholders for the activities of the CISSD Project Work Group.

6] ICD Update and Revision Platform: The WHO has established an updating process as part of its planning for revision of ICD by 2015.

According to the WHO, “…a revision plan has been developed following discussions with a number of WHO Collaborating Centres and other interested parties and a coordinated series of methods will be utilized to revise the current ICD-10 to arrive at a new generation of classification.”

To facilitate this process, the WHO maintains an ICD Revision and Update Platform on an extranet.

A 22 page PDF document Production of ICD-11: The overall revision process can be downloaded.

There are three consecutive steps in the revision process:

1. ICD 10 Plus for entering and commenting ICD Revision proposals
2. Draft ICD -11 for comments and field trials
3. ICD -11 and terminology /ontology work

“This current platform is the first step to allow all users to enter and comment on proposals for ICD revision.”

More information on the system and how to use it is available in the USER Guide PDF. An html version is also available from the Revision Platform site.

Access to the Revision and Update Platform requires creation of an account (Name, Username, email address and password required which provided immediate access). Once logged in, proposals and other information can be searched for.

Proposals for revisions to the so-called “Somatoform Disorder” classifications can be found in the group TAGMH (Mental Health).

In March 2008, Dr Richard Sykes submitted eighteen Proposals for ICD-11 Revision in group TAGMH. In all cases, the reference cited was the Review Paper of the CISSD Project: Kroenke K, Sharpe M, Sykes R. Revising the Classification of Somatoform Disorders: Key Issues and Preliminary Recommendations. [3]

ICD Update and Revision Platform

Topical Advisory Group – Mental Health (TAGMH)

https://extranet.who.int/icdrevision/GroupPage.aspx?gcode=104

F45.4

R 1299 Deletion of Persistent Somatoform Pain Disorder Sykes Richard

The CISSD Project Working Group recommends that the category be deleted. The specific type of pain condition or conditions, e.g. low back pain, headache, fibromyalgia, noncardiac chest pain, should be classified outside Ch V. If psychological factors are also present, these should be given an additional coding from Ch V, either as a discrete disorder, e.g. Major Depression, Panic Disorder, or as F54 Psychological and behavioural factors associated with disorders or diseases classified elsewhere (Psychological Factors Affecting Medical Condition in DSM-IV).

Rationale

1. There is extensive literature showing comorbidity between chronic pain and depression, their bidirectional dependency and central nervous system linkages.

2. The category has been infrequently researched as a discrete diagnosis

3. Pain experts do not use the category

4. Assigning a Chapter V diagnosis to a small subset of chronic pain patients is highly arbitrary

5. Assigning a Chapter V diagnosis to a small subset of chronic pain patients presumes, or may be understood to presume, that there is a whole class of chronic pain patients for whom physiological factors are irrelevant.

————————-

F45.1

R 1300 Deletion of Category of Undifferentiated Somatoform Disorder Sykes Richard

The CISSD Project Working Group recommends that the category of Undifferentiated Somatoform Disorder be deleted. Some of the conditions now placed in this category should be classified outside Chapter V (i.e. not as one of the “Mental or Behavioural Disorders”). Others might be placed in the category of Somatization Disorder, if a more inclusive definition of Somatization Disorder is adopted. (The CISSD Project Working Group recommends that, if a category of Somatization Disorder is retained, a broader definition of it is adopted,)

Rationale

1. A psychiatric diagnosis should not be made solely on the basis that symptoms are medically unexplained. Positive “psychological” criteria are also needed.

2. The category is too broad and heterogeneous.

3. The category is not well validated.

4. The category is not widely used.

————————-

F45.2

R 1301 Updating of criteria for Hypochondriacal Disorder Sykes Richard

The CISSD Project Working Group recommends that the criteria be revised and updated.

Rationale

1. There have been several recent evidence-based reviews which should be taken into account.

2. The ineffectiveness of medical reassurance has been shown to be an unreliable criterion.

————————-

F45.2

R 1302 Hypochondriacal Disorder to be renamed Health Anxiety Sykes Richard

The CISSD Project Working Group recommends that Hypochondriacal Disorder be renamed “Health Anxiety”.

Rationale

“Health Anxiety” is less stigmatizing and more acceptable to patients. Unnecessary aggravation of patients is to be avoided

————————-

F45.0

R 1303 Broader Concept for Somatization Disorder Sykes Richard

The CISSD Project Working Group recommends that if a category of Somatization Disorder is retained, the criteria should include positive “psychological” criteria.

Rationale

1. The present criteria for Somatoform Disorder are very restrictive and pick out a strictly limited number of patients.

2. A broader category would be more useful in practice.

————————-

F45.0

R 1304 Positive Psychological Criteria for Somatization Disorder Sykes Richard

The CISSD Project Working Group recommends that if a category of Somatization Disorder is retained, the criteria should include positive “psychological” criteria.

Rationale

A psychiatric diagnosis should not be made solely on the basis that symptoms are medically unexplained. Positive “psychological” criteria are also needed.

————————-

 

Ch05

R 1305 ICD-11 and DSM-V to be made compatible Sykes Richard

The CISSD Project Working Group recommends that the APA and the WHO should work together to make ICD-11 and DSM-V compatible with respect to categories, disorders and criteria for mental disorders.

Rationale

A single universally agreed classification would have substantial benefits for international communication and research. Differences between the classifications introduce unnecessary difficulties.

————————-

F45

R 1306 Positive Psychological Criteria for Somatoform Disorder Sykes Richard

The CISSD Project Working Group recommends that if the category of Somatoform Disorder is retained, positive psychological criteria should be included in addition to the symptoms being unexplained.

Rationale

Being unexplained does not, on its own, justify a psychiatric diagnosis. Positive psychological criteria are also needed.

————————-

 

F45.3

R 1307 Deletion of Somatoform Autonomic Dysfunction Sykes Richard

The CISSD Project Working Group recommends that the category of Somatoform Autonomic Dysfunction be deleted.

Rationale

1. Its deletion would increase compatibility between ICD and DSM.

2. Some of the disorders listed here, e.g, irritable bowel syndrome, are listed elsewhere in ICD, outside Ch V. Is it confusing for a disorder to have alternative classifications?

————————-

F48.0

R 1308 Deletion of Neurasthenia Sykes Richard

The CISSD Project Working Group recommends that the category of Neurasthenia be deleted.

Rationale

1. The diagnosis is increasingly rarely used.

2. Its elimination would increase compatibility between ICD and DSM

————————-

 

F45

R 1309 Whether views of non-psychiatric clinicians and of patients be taken into account Sykes Richard

The CISSD Project Working Group recommends that if the category of Somatoform Disorder is retained, the following be considered as a key issue: To what extent should the views of non-psychiatric clinicians and of patients be taken into consideration in the process of revising the classifications?

Rationale

1. Patients with unexplained symptoms that meet criteria for a somatoform disorder are mostly seen in primary care as well as in medical and surgical subspecialty settings, where somatoform diagnoses are seldom used.

2. Patients often resist having somatic problems labelled as a psychiatric disorder, with the consequent stigma and negative financial implications.

————————-

 

F45

R 1310 Key Issue – Whether some terms and concepts in the Somatoform Category be abolished Sykes Richard

The CISSD Project Working Group recommends that if the category of Somatoform Disorder is retained, the following be considered as a key issue: Should some terms and concepts such as “somatization”, “somatoform”, “psychosomatic”, “functional”, “pseudo-neurological” be abolished?

Rationale

These terms can be unsatisfying or stigmatizing for some patients. Language which is more acceptable to patients is likely to lead to improved communication and treatment result

————————-

 

F45

R 1311 Key Issue – Whether functional syndromes should have a unique classification Sykes Richard

The CISSD Project Working Group recommends that if the category of Somatoform Disorder is retained, the following be considered as a key issue: Should “functional syndromes”, e.g. irritable bowel syndrome, have a unique classification?

Rationale

At present some “functional” syndromes have alternative classifications. They are included in Ch V, although they also have a place outside Ch V. Irritable Bowel Syndrome, for example, is given an alternative classification in Ch V as F45.32, a somatoform autonomic dysfunction disorder, one of the somatoform disorders, although it also has a place outside Ch V as K58, an intestinal disease.

It would appear inconsistent, however, if a patient with the same symptoms is classified differently in Psychiatry and in Primary Care – if, when seen by a psychiatrist, he is diagnosed with a somatoform disorder in chapter V, but when seen in primary care is placed outside chapter V.

————————-

 

F45

R 1312 Key Issue – Whether conditions defined by somatic symptoms alone should be classified outside Ch V Sykes Richard

The CISSD Project Working Group recommends that if the category of Somatoform Disorder is retained, the following be considered as a key issue: Should conditions defined by somatic symptoms be considered “medical” rather than “psychiatric” and be placed outside Chapter V?

Rationale

At present, some conditions defined by somatic symptoms alone, e.g. Undifferentiated Somatoform Disorders, are classified in Ch V. However

1. Medical practitioners outside Mental Health regard such conditions as “medical”.

2. Patients do not want to be stigmatised by the diagnosis of a Mental Disorder

————————-

 

F45

R 1313 Key Issue – whether being not fully explained should remain a criterion for Somatoform Disorders Sykes Richard

The CISSD Project Working Group recommends that if the category of Somatoform Disorder is retained, the following be considered as a key issue: Should “explanation” remain a core construct in defining Somatoform Disorders?

Rationale

At present a key feature of the definition of Somatoform Disorders is that they are not medically explained or not fully medically explained. However

1 Determining what is “not fully explained” can be difficult, particularly when there are comorbid medical conditions.

2. All psychiatric conditions are considered to have a biopsychosocial development.

3. Total symptom count (including explained as well as unexplained symptoms) may be as good a marker for outcomes.

————————-

 

Ch05

R 1316 Key Issue – Whether substitutes be found for terms and concepts that may give offence to patients Sykes Richard

The CISSD Project Working Group recommends that the following be considered as a key issue: Should substitutes be found for terms and concepts which may give offence to patients? Such terms and concepts may include several in the Somatoform Disorder category, e.g. “somatization”, “somatoform”, “psychosomatic”, “functional”, “pseudo-neurological”.

Rationale

1. Some terms can be unsatisfying or stigmatizing for some patients.

2. Language which is more acceptable to patients is likely to lead to improved communication and improved treatment results.

————————-

Ch05

R 1317 Key Issue – whether all disorders should have a unique classification Sykes Richard

The CISSD Project Working Group recommends that the following be considered as a key issue: Should all disorders have a unique classification?

Rationale

At present some “functional” syndromes have alternative classifications. They are included in Ch V, although they also have a place outside Ch V. Irritable Bowel Syndrome, for example, is given an alternative classification in Ch V as F45.32, a somatoform autonomic dysfunction disorder, one of the somatoform disorders, although it also has a place outside Ch V as K58, an intestinal disease.

It would appear inconsistent, however, if a patient with the same symptoms is classified differently in Psychiatry and in Primary Care – if, when seen by a psychiatrist, he is diagnosed with a somatoform disorder in chapter V, but when seen in primary care is placed outside chapter V.

————————-

F45.0

R 1319 Key Issue – whether symptom checklists be used in defining Somatization Disorder Sykes Richard

The CISSD Project Working Group recommends that if a category of Somatization Disorder is retained, the following be considered as a key issue: Should symptom checklists be used in the criteria for Somatization Disorder?

Rationale

1. They may have operational value

2. Although symptom checklist results may be more difficult to interpret in multi-system diseases, such diseases are not commonly misdiagnosed as somatoform disorders.

Chapter V

http://www.who.int/classifications/apps/icd/icd10online/index.htm?gF40.htm+F454

Mental and behavioural disorders (F00-F99)
Neurotic, stress-related and somatoform disorders (F40-F48)

————————-

[1]  Action for M.E. Report and Accounts, Year Ending 31 March 2007
[2] WHO ICD Update and Revision Platform
[3] Kroenke K, Sharpe M, Sykes R: Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations. Psychosomatics 2007 Jul-Aug;48(4):277-85

 

Compiled by Suzy Chapman

The URL for The Elephant in the Room Part Ten is:

https://meagenda.wordpress.com/2009/03/11/the-who-somatisation-project-cissd-project-the-elephant-in-the-room-part-ten/

or

http://tinyurl.com/elephantpart-ten

Previous reports:

The Elephant in the Room Part One

The Elephant in the Room Part Two

The Elephant in the Room Part Three

The Elephant in the Room Part Four

The Elephant in the Room Part Five

The Elephant in the Room Part Six

The Elephant in the Room Part Seven

The Elephant in the Room Part Eight

The Elephant in the Room Part Nine

Published: 11.03.09
Updated:

Advertisements