12 Point Skinny on ICD-11

Post #305 Shortlink: http://wp.me/pKrrB-3Rm

Update at May 15, 2014: Somatization disorder, listed as a uniquely coded child category under parent, Bodily distress disorder, has been removed from the Beta draft Linearizations since publishing the update on May 9. Instead, the ICD-10 legacy terms, somatoform disorders and Somatization disorder are both now listed under Synonyms to Bodily distress disorder and also listed as Index Terms. The three severity specifiers for BDD, (Mild, Moderate, Severe) remain.

Neurasthenia, listed as a child category under parent, Mental and behavioural disorders, has been removed from the Linearizations and is not listed in the PDF for the print version of the Alphabetical Index.

Update at May 9, 2014: Three uniquely coded severity specifiers (Mild, Moderate, Severe) have now been added back as child categories to Bodily distress disorder but Somatization disorder remains as a uniquely coded child category to BDD.

As no new posts will be added to the site from April, I leave you with my 12 Point Skinny on ICD-11 first published in February.

The version below has been updated to reflect changes since February.

A brief summary of how things stand in the Beta drafting platform at March 31, 2014.

If reposting, please repost unedited, with the publication date and source URL:

12 Point Skinny on ICD-11

Dx Revision Watch’s 12 Point Skinny on ICD-11:

1. The ICD-10 terms, PVFS, BME, and CFS, are not currently displaying in the public version of the Beta drafting platform under any chapters, either as ICD Title terms, or as Inclusion terms to ICD Title terms, or under Synonyms to ICD Title terms.

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

3. Other than this position, WHO/ICD Revision has yet to clarify how it does propose to classify PVFS, BME, and CFS within ICD-11, in terms of intentions for specific chapter locations, parent classes (including any proposals to assign any of these terms to multiple parentage), hierarchies, Definitions text and other “Content Model” descriptive parameters.

4. Since June 2013, multiple requests have been made to WHO/ICD Revision to account for the current absence of these terms from the public version of the Beta draft and to issue a statement clarifying intent. On March 18, 2014, a joint letter was sent to key WHO/ICD Revision personnel [1].

5. Two separate working groups have been appointed by WHO/ICD Revision that are advising on the revision of the Somatoform disorders categories.

6. In 2012, two sets of emerging proposals were published – one for a tentative construct called Bodily distress disorder (BDD), and one for a divergent construct, tentatively called Bodily stress syndrome (BSS).

7. In 2012, the emerging proposals by the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (the Gureje led S3DWG sub working group) for its Bodily distress disorder (BDD) concept had described an SSD-like construct with criteria based on psychobehavioural responses [2].

8. In 2012, the emerging proposals by the PCCG (the Goldberg led ICD-11 Primary Care Consultation Group) presented an alternative Bodily stress syndrome (BSS) construct [3].

This proposal drew heavily on Fink et al’s Bodily Distress Syndrome (BDS) disorder model, requiring symptom patterns from body systems to meet the criteria. But the PCCG proposed to incorporate some SSD-like psychobehavioural responses, which do not form part of Fink’s BDS criteria – attempting a mash-up between two divergent constructs or disorder models [4].

9. The Definition for Bodily distress disorder (BDD) that is inserted into the Beta drafting platform [5] is based on the disorder description wording in the 2012 Gureje, Creed BDD paper, which had described an SSD-like construct [3].

10. BDD had a child category, Severe bodily distress disorder. This is now removed from the public Beta draft. Instead, ICD-10’s Somatization disorder has been restored to the draft linearizations as the child category to parent, Bodily distress disorder. Additionally, ICD-10’s F48.0 Neurasthenia has been restored to the draft, under parent, Mental and behavioural disorders.

Update at May 9, 2014: Three uniquely coded severity specifiers (Mild, Moderate, Severe) have now been added back as child categories to Bodily distress disorder but Somatization disorder remains as a uniquely coded child category to BDD.

In the ICD-11 Beta, it had previously been proposed that seven ICD-10 Somatoform disorders categories (F45.0 – F45.9) plus F48.0 Neurasthenia would be replaced by this single new disorder construct, Bodily distress disorder (BDD) [2].

But how these two (now apparently proposed to be restored) ICD-10 legacy categories, Somatization disorder and Neurasthenia, are currently envisaged to function within a new disorder framework to replace the Somatoform disorders categories remains unclarified.

Update at May 15, 2014: Somatization disorder, listed as a uniquely coded child category under parent, Bodily distress disorder, has been removed from the Beta draft Linearizations since publishing the update on May 9. Instead, the ICD-10 legacy terms, somatoform disorders and Somatization disorder are both now listed under Synonyms to Bodily distress disorder and also listed as Index Terms. The three severity specifiers for BDD, (Mild, Moderate, Severe) remain.

Neurasthenia, listed as a child category under parent, Mental and behavioural disorders, has now been removed from the Linearizations and is not listed in the PDF for the print version of the Alphabetical Index.

11. Without full disorder descriptions, criteria, inclusions, exclusions, differential diagnoses etc. or field test protocol, there is insufficient information in the public version of the Beta draft to determine the characteristics and criteria for whatever construct is being progressed to field tests; or to determine whether the initial field testing protocol represents the construct favoured by the Revision Steering Group (RSG); or to determine whether the two advisory groups and the RSG have reached consensus over the revision of the Somatoform disorders categories.

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

+++
References for 12 Point Skinny on ICD-11:

1. Joint letter signed by Annette Brooke MP, Chair, All Party Parliamentary Group on M.E., Countess of Mar, Chair, House of Lords-led group Forward ME, Dr Charles Shepherd, Medical Adviser of the ME Association, Sonya Chawdhury, Chief Executive, Action for M.E.
http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/get-informed/who-icd-11-letter-17-3-14-sc.pdf

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. 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

4. Graphic comparing Fink et al’s BDS criteria with DSM-5’s SSD

5. ICD-11 Beta drafting platform public version: Bodily distress disorder: http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f767044268

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 Topic Advisory Group Managing Editors, the ICD Revision Steering Group and WHO classification experts.

Joint Open letter to WHO/ICD Revision over classification of absent G93.3 terms for ICD-11 Beta draft

Post #301 Shortlink: http://wp.me/pKrrB-3Pp

Today, Sonya Chowdhury, CEO, Action for M.E., has released an Open Letter to Dr Ra’ad Shakir, Chair, ICD-11 Revision Topic Advisory Group for Neurology.

The Open Letter has been copied to Tarun Dua, Managing Editor, Neurology Topic Advisory Group, WHO; Christopher Chute, Chair, ICD Revision Steering Group, WHO; Dr Geoffrey Reed, Senior Project Officer, International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders, ICD-11, WHO; Dr Margaret Chan, Director General, WHO; Dr Robert Jakob, MD, Medical Adviser, WHO.

In the interests of transparency, I have acted in an advisory capacity in the preparation of this joint letter in respect of existing ICD-10 coding, proposals for the G93.3 terms for ICD-11, as they had stood in January 2013, and around Beta drafting platform technicalities.

http://www.actionforme.org.uk/get-informed/news/policy-and-campaigns/open-letter-to-who-over-classification

Open letter to WHO over classification

18 March, 2014

Action for M.E.

Chief Executive Sonya Chowdhury has written an open letter to Dr Ra’ad Shakir, Chair of the World Health Organisation neurology topic advisory group, regarding concerns over the classification of M.E./CFS in the WHO ICD-11.

There has been concern within the M.E. community that the three ICD-10 G93.3 terms, PVFS (Postviral Fatigue Syndrome), BME (Benign Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) have been missing from the public version of ICD-11 Beta draft since early 2013.

The letter which has been produced collectively, is also signed by Annette Brooke MP, Chair of the All Party Parliamentary Group on M.E., the Countess of Mar, Chair of the House of Lords-led group Forward ME, and Dr Charles Shepherd, Medical Adviser of the ME Association who, like Sonya, is a member of the APPG secretariat.

The PDF of the joint letter can be read here:

Click to access who-icd-11-letter-17-3-14-sc.pdf

Open PDF here:     Joint Open Letter to WHO/ICD 03.18.14

Text

OPEN LETTER

Dr Ra’’ad Shakir
Chair, WHO Neurology Topic Advisory Group
Chief of Neurology
Imperial College NHS Trust
Charing Cross Hospital
London

17th March 2014

Dear Dr Shakir

Re: WHO ICD-11 Beta draft classification

We are writing, collectively, on behalf of the estimated 250,000 people with M.E./CFS. in the UK.

As you may be aware, there has been considerable discussion and concern expressed within the M.E./CFS community regarding the WHO ICD-11 classification.

As both individuals and organisations, we have received a number of questions and concerns from people affected by M.E./CFS and are therefore writing to seek clarification to enable us to respond accordingly.

We are keen to work collaboratively with others to help empower and support people affected by M.E. and as such, would be very happy to discuss this further with you directly or welcome you to a meeting of either the All Party Parliamentary Group on M.E. or Forward M.E. (a House of Lords-led collaboration).

A summary of our current understanding

The three ICD-10 G93.3 terms, PVFS (Postviral fatigue syndrome), BME (Benign myalgic encephalomyelitis) and CFS (Chronic fatigue syndrome) have been missing from the public version of ICD-11 Beta draft since early 2013.

Prior to early 2013, in the public version of the ICD-11 Beta drafting platform, Chronic Fatigue Syndrome had been listed in the Foundation Component as an ICD Title entity under Diseases of the nervous system, with Benign Myalgic encephalomyelitis specified as an Inclusion term and Postviral fatigue syndrome listed under Synonyms to the Chronic Fatigue Syndrome Title entity. Therefore, all three terms were accounted for within the Beta draft; the terms were then removed from the public version of the Beta draft.

Currently, no entry for any of the terms, CFS, BME or PVFS, under any hierarchy, can be found within any chapter of ICD-11 Beta in the Foundation or the Morbidity and Mortality linearization, the top level category list, the PDF print version or the PDF Alphabetical Index.

The replies that WHO Twitter admin gave to members of the public who enquired about this, stated that there was no proposal to include ME, CFS or Fybromyalgia as Mental and behavioural disorders in ICD-11. They did not say (as Parliamentary Under-Secretary of State for Health, Jane Ellison MP stated in response to a question from Annette Brooke MP) “no proposal to reclassify ME/CFS in ICD-11 ”(¹ Hansard, House of Commons, Oral Answers to Questions, Tuesday, February 25, 2014).

A member of the public also asked on Twitter if there is a proposal to reclassify ME, CFS and Fybromyalgia as “Bodily Distress Disorders” in ICD-11, but no reply was forthcoming from WHO Twitter Admin. Also, they did not confirm a proposal to ‘retain’ in Chapter 07, only not to include in Chapter 05.

Points of clarification requested

1. Under which chapters and parent categories are the following three ICD-10 G93.3 entities currently proposed to be classified within ICD-11:

Chronic Fatigue Syndrome;
Benign Myalgic encephalomyelitis;
Postviral fatigue syndrome?

2. What is the current proposed hierarchy or relationship within ICD-11 between these three entities, in terms of Title term, Inclusion term, Synonym, and which of these three terms are proposed to be assigned a Definition and other “Content Model” parameters?

3. What is the reason for these three terms not currently displaying in the public version of the Beta drafting platform?

4. When does ICD-11 Revision intend to restore these three terms to the public version of the Beta drafting platform?

We very much appreciate you taking the time to respond to our request and look forward to hearing from you.

Yours sincerely

Sonya Chowdhury, CEO, Action for M.E.; Secretariat, All Party Parliamentary Group on M.E.
Annette Brook MP; Chair, All Party Parliamentary Group on M.E.
Countess of Mar; Forward M.E., House of Lords
Dr Charles Shepherd, Medical Adviser, ME Association; Secretariat, All Party Parliamentary Group on M.E.

c.c.Tarun Dua, Managing Editor, Neurology Topic Advisory Group, WHO
Christopher Chute, Chair, ICD Revision Steering Group, WHO
Dr Geoffrey Rees [sic], Project Manager, Mental & Behavioural Chapter, ICD-11, WHO
Dr Margaret Chan, Director General, WHO
Dr Robert Jakob, MD, Medical Adviser, WHO

Action for M.E.
PO Box 2778
Bristol BS1 9DJ