The Elephant in the Room Series Three: DSM, ICD: transparency and timelines

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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

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The Elephant in the Room Series Three: DSM, ICD: transparency and timelines

WordPress shortlink for this posting:  http://wp.me/p5foE-1Yh

(See also update: 18 September 2009:  Summary Report: 4th Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders )

Psychiatric Times online maintains a resource for the current edition of the APA’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) – the so-called “Psychiatrists’ Bible” – with articles, updates and commentary on the revision process towards the next edition of DSM (DSM-V) at DSM-V Topic Centre.

Over the past couple of months, the journal has published a series of commentaries around the revision process, including controversial critiques from some of those who had been involved in the development of previous editions of DSM, provoking caustic responses from the DSM-V Task Force.

These exchanges have previously been highlighted here and here on ME agenda and you can catch up on more recent commentaries and responses here:

http://www.psychiatrictimes.com/display/article/10168/1431322

31 July 2009, Psychiatric Times. Vol. 26 No. 8 EDITORIAL: The Great DSM Debate, Susan Kweskin, Group Editorial Director, Psychiatric Times

http://www.psychiatrictimes.com/display/article/10168/1431333

07 August 2009, Psychiatric Times. Vol. 26 No. 8 COMMENTARY: A Response to the Charge of Financial Motivation, Allen Frances, MD

http://www.psychiatrictimes.com/display/article/10168/1444633

26 August 2009, PsychiatricTimes.com. COMMENTARY: Advice To DSM V. . .Change Deadlines And Text, Keep Criteria Stable, Allen Frances, MD

http://www.psychiatrictimes.com/display/article/10168/1448330

01 September 2009, PsychiatricTimes.com. CLINICAL: Advice to DSM-V: Integrate with ICD-11, Allen Frances, MD

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Additional commentary from various authors on Psychiatric Times blog and on several other blogs, here:

http://www.mindhacks.com/blog/2009/07/of_manuals_and_madne.html

22 July 2009, Of manuals and madness, the fight rolls on

http://www.nature.com/news/2009/090722/full/460445a.html

22 July 2009 | Nature 460, 445 (2009) | doi:10.1038/460445a | published online

News: Psychiatry manual revisions spark row, US psychiatrists divided by claims of secrecy and scientific overreach, Heidi Ledford (To read this story in full you will need to login or make a payment)

http://carlatpsychiatry.blogspot.com/2009/08/dsm-v-transparency-case-study.html

04 August 2009, DSM-V Transparency: A Case Study

and here (commenting briefly on his contribution to the recent BBC R4 broadcast):

http://carlatpsychiatry.blogspot.com/2009/08/new-bbc-program-rewriting-psychiatrists.html

06 August 6 2009, New BBC Program: Rewriting the Psychiatrist’s Bible

(Broadcast no longer available on BBC iPlayer)

http://psychcentral.com/blog/archives/2009/06/25/transparency-kupfer-and-the-dsm-v/

25 June 2009, Transparency, Kupfer and the DSM-V, John M Grohol, PsyD

http://psychcentral.com/blog/archives/2009/08/07/dsm-v-update-and-transparency

07 August 2009, PsychCentral: DSM V Update and Transparency, John M Grohol, PsyD

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Previous DSM Task Force chairs, Robert L Spitzer and Allen Frances, have been two of the most vocal critics of the current Task Force’s oversight of the revision process. Read their joint letter to the APA Board of Trustees here:  Letter to APA Board of Trustees July 09

In “Advice To DSM V. . .Change Deadlines And Text, Keep Criteria Stable” (Psychiatric Times, 26 August) Allen Frances, who had chaired the DSM-IV Task Force, writes:

“The official publication date for DSM-V is May 2012. That date was picked to be consistent with an earlier, no longer correct, expectation that ICD-11 would be published in that same year. It now seems obvious that this looming deadline is neither necessary nor feasible, and that a later or a flexible deadline should instead be substituted. Why is 2012 no longer a necessary deadline? It recently became known that delays in the preparation of the ICD-11 will postpone its publication at least until 2014.”

But it has been known for some time that the timeline for dissemination of ICD-11 has slipped by a couple of years.

Exhibit 3, Page 14 of this American Psychological Association document (note this is not the American Psychiatric Association, publishers of DSM, who also use the acronym “APA”) confirms that the WHO’s original goal had been to complete the revision and release of ICD-11 by 2012. (For those interested in the relationships between the WHO, the IUPsyS, the American Psychological Association and the American Psychiatric Association, this document is worth a skim):

http://www.apa.org/international/s08agenda25WHOIUPsyS.pdf

COMMITTEE ON INTERNATIONAL RELATIONS ACTION, March 28–30, 2008

Agenda Item No. 25 Revision of the International Classification of Diseases (ICD-10) and Involvement of Psychology

Issue

The World Health Organization (WHO) is undertaking a revision of the International Classification of Diseases and Related Health Problems (ICD) and psychology has been offered an unprecedented opportunity to provide significant leadership in this effort. The purpose of this item is to request guidance and support for an APA commitment to provide sustained resources during the ICD revision process.

Background

The World Health Organization (WHO) is undertaking a revision of the International Classification of Diseases and Related Health Problems (ICD) and psychology has been offered an opportunity to provide significant leadership in this effort. In gathering partners for the revision, WHO engages directly only with international non-governmental organizations (NGOs). For psychology, this partner is the International Union of Psychological Science (IUPsyS), an umbrella organization of 70 national psychology associations (or coalitions of organizations) that represents organized psychology. IUPsyS has been granted status as an accredited NGO with WHO and has been asked to support the core involvement of a psychologist in the revision process. IUPsyS, in turn, has asked APA to support this effort by funding the services of an APA member in this work. WHO has specifically requested that former APA Practice Directorate Assistant Executive Director Dr. Geoffrey Reed serve in the consultant role. APA has collaborated with IUPsyS on a range of projects in the past.

This is an important opportunity that has arisen in large part because psychology (through IUPsyS and prior work of APA and Dr. Reed on related WHO activities) has engaged in a focused, sustained effort of activities and contributions to ongoing work with WHO. Although historically, the ICD process was dominated by psychiatric and medical models (the only WHO partner for mental health has been the World Psychiatric Organization, with whom the American Psychiatric Association partners), the present invitation has, for the first time, included psychology to assume one of two senior roles as part of the core revision team…

The formal request from WHO to IUPsyS is attached. The request indicates WHO’s intention that Dr. Reed join the core revision team as the primary coordinating person for the work of the Advisory Group (a role he has already begun to take on, as noted above), and that he be integrally involved in the drafting and redrafting of categories and criteria and in the development and implementation of field trials. The importance of this opportunity cannot be understated. Until now, such a role would have been reserved for psychiatry, which will be the default position if psychology is not able to meet WHO’s request…

[…]

Full document here

Appended to this document (in a separate PDF) is a letter signed by WHO Secretariat, Dr Shekhar Saxena, dated 8 August 2007, listed as “Exhibit 1 Correspondence”, the purpose of which was to formally request that the IUPsyS (International Union of Psychological Science) broker the funding to enable the WHO to extend the role that Dr Geoffrey Reed was already undertaking and retain him as full-time, primary co-ordinator of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders (ICD-10 Chapter V).

PDF EXHIBIT 1:  http://www.apa.org/international/s08agenda25-Exhibit1.pdf

Page 1 states that “The revision of ICD […] is scheduled to be completed by 2012”. Page 4 includes a “Revision of ICD-10 Mental and Behavioural Disorders Provisional Activity Plan and Resource Needs” table which sets out the tasks for “Completion of the second draft; Harmonization with other classifications (e.g. ICF DSM); Final review; Translation; Dissemination” during year 2011.

The first meeting of the Advisory Group (which had taken place in January 2007, predating the letter requesting procurement of funding for the continued secondment of Dr Reed) had already noted a dissemination date of 2014, “consistent with the overall ICD-10 revision process”. It is unclear, then, why the WHO were including in their request for funding a timeline for the revision of Chapter V that, according to the summary report of the group’s first meeting, had already slipped by some two years.

Summary Report: first Meeting of the Advisory Group January 2007  [pdf 62kb]

[…]

The Advisory Group agreed with the following tentative timelines that are consistent with the overall ICD-10 revision process:

• An alpha draft version of the ICD-11 mental and behavioural disorders chapter should be completed for review by the Advisory Group by the end of 2008.

• A broad and international review and comment process on the alpha draft should be conducted during 2009.

• Based on comments received, a beta draft should be prepared during 2010. Field testing of the beta draft should be conducted during 2011.

• Based on the results of field trials, a final proposed version should be prepared during 2012 and made available for public review.

It is hoped that the full ICD-11 will be ready for approval by the World Health Assembly in 2014.

These timelines will be reviewed and revised as the work progresses.

By March 2008 (at the time of writing, the last Advisory Group meeting for which a summary has been published) the timeline for completion of alpha and beta drafts had slipped even further:

Summary Report: third Meeting of the Advisory Group March 2008  [pdf 257kb]

[…]

The timeline for the revision process is as follows:

the Alpha draft version of ICD-11 should be completed in 2010, followed by 1 year for commentary and consultation.

The Beta draft version should be completed in 2011, followed by field trials, analysis of field trial data, and revision during the subsequent 2 years.

The final version for public viewing should be completed in 2013, with approval by the World Health Assembly in 2014.

So although Dr Frances writes “It recently became known that delays in the preparation of the ICD-11 will postpone its publication at least until 2014” it has been publicly reported since at least the publication of the summary of the January 2007 Advisory Group meeting that the anticipated dissemination of ICD-11 had slipped significantly, with the result that it was already lagging at least two years behind the planned publication date of DSM-V (currently May 2012).

A June 2009 PowerPoint presentation by Robert Jakob (Medical Officer, Classifications and Terminologies, WHO Geneva) sets out timelines for ICD-11 and can be download here: ICD Revision Process [PDF format 1.33 MB]

ICD Revision Process
ICD-11 June 2009

Presentation: Robert Jakob / Bedirhan Üstün

See Slide 9 for “Tentative Timeline” (for overall revision process)

Tentative Timeline

2010 : Alpha version ( ICD 10+ → ICD 11 draft)
– +1 YR : Commentaries and consultations
2011 : Beta version & Field Trials Version
– +2 YR : Field trials
2013 : Final version for public viewing
– 2014 : WHA Approval
2015+ : Implementation

See Slide 38 for “ICD-11 Alpha Drafting Timeline” (to May 2010)

See Slide 39 for “ICD-11 Alpha Draft Calendar” (to May 2010)

Alpha Draft Calendar

Preparations will finish before 31 August 2009
Overall Drafting Period: 14 September 2009 – 15 April 2010
Phase 1: 14 Sept – 11 Dec 2009 (10 WORKING WEEKS)
Provisional Interim Review: 15 Dec – 15 Jan
Phase 2: 18 Jan – 16 April 2010 (10 WORKING WEEKS)
Prefinal Review by WHOFIC: 15 April – Council
Submission for Systematic ALPHA TESTS: May 2010

According to “ICD Revision” on Facebook:

http://www.facebook.com/pages/ICD-Revision/117942832025

ICD-11 alpha draft will be ready by 10 May 2010
ICD-11 beta draft will be ready by 10 May 2011
ICD final draft will be submitted to WHA by 2014

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It is reported that the APA plans to launch some field trials for DSM-V in October, with all field trials scheduled for completion by the end of 2010 for an anticipated publication date of May 2012.

See:  DSM-V Field Trials Set to Begin, Elsevier Global Medical News, 27 August, 2009

In Advice To DSM V. . .Change Deadlines And Text, Keep Criteria Stable , (Psychiatric Times, 26 August), Frances goes on to raise the issue of non parallel timelines and the forthcoming shift from ICD-9-CM to ICD-10-CM in the US – a transition now scheduled for October 2013:

Frances writes:

“Under normal circumstances, it would make sense to continue the tradition of publishing DSM-V and ICD-11 simultaneously, whenever ICD-11 is ready—probably in 2014. But there is also a problem with a 2014 deadline caused by a coding change that will go into effect before then. ICD-9-CM is now the official method of diagnostic coding used to specify all medical encounters in the United States. It will be replaced in October 2013 by a completely revamped ICD-10-CM. Publishing DSM-V much before October 2013 would result in great confusion and force a choice between 2 equally undesirable options: publish DSM-V in 2012 with the current ICD-9-CM codes, which would be usable only for 18 months; or else, publish DSM-V with the new ICD-10-CM codes even though DSM users would still have to use the ICD-9-CM codes for the next 18 months. Only by delaying publication of DSM-V until just before October 2013 would this problem be solved.”

I have been unable to find any public statements from the DSM Task Force addressing this issue.

For commentary around ICD timelines and the implications for the shift from ICD-9-CM to ICD-10-CM from Dr Christopher Chute, MD, Mayo Clinic bioinformatics specialist and Chair of the ICD Revision Steering Group, see video of PowerPoint presentation, 29 April 08 at http://www.bioontology.org/ICD11-2  (31.55 mins in from start, slides 54, 55, 56).

The APA participates with the WHO in an ICD-DSM Harmonization Coordination Group. The task of this group is “to facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria” with the objective that “the WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are identical for ICD and DSM.”

The DSM-V Somatic Symptom Disorders Work Group published its latest proposals for the redefining of the classification of “Somatoform Disorders” in a brief April 09 update on the APA’s website, and also as a preliminary report in the June 09 issue of the Journal of Psychosomatic Research, in an Editorial by DSM Work Group members, Francis Creed and Joel Dimsdale (Chair). These latest proposals have not been presented in any great detail and may be subject to further revision prior to forthcoming field trials and issue of alpha drafts. No further DSM-V Work Group updates have been published since April and it’s not known whether the APA intends to publish interim updates before commencing its field trials. 

On 09 July, in Dr Frances Responds to Dr Carpenter: A Sharp Difference of Opinion, Frances called for the posting of all the suggested wordings for DSM-V criteria sets well before considering field trials:

“Will [Dr William Carpenter, MD] seems to think that his presentations at professional meetings in front of relatively small audiences provide a sufficiently open DSM-V process…We, the field, still know almost nothing about the content of what is being considered for DSM-V or how the options still in play are justified by the literature reviews and data reanalyses…We should have every wording of every proposed criteria set or dimension. Why not post these now to allow for the widest review well before field trials are started? I cannot imagine going to the trouble and expense of field testing before there is confidence that the diagnostic concepts make sense and that they are appropriately worded. Equally puzzling is the lack of posting of the literature reviews and of the methods of the proposed field trials. The DSM-V leadership has made the truly bizarre claim that they have provided the “most open process” of all the previous DSM revisions, but they have not posted any explicit or detailed indication of what they are doing and why…If the real reason for not posting is that the material is not yet in a presentable form, admit this and postpone the field trials until everything can be posted and fully vetted.”

Currently we have no information about what changes the WHO might be proposing for its corresponding Chapter V: F45 – F48 codes, how closely the WHO and DSM have been collaborating on the revision of their respective “Somatoform Disorders” sections or to what extent the WHO intends that any changes to this specific section of Chapter V will mirror Task Force proposals for DSM-V, whatever these might be.

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In “Advice to DSM-V: Integrate with ICD-11” (Psychiatric Times, 01 September), Allen Frances suggests a radical and provocative “solution” to the various obstacles he perceives – the postponement of the publication date for DSM-V and the integration of DSM-V and ICD-11 into one system.

Frances writes:

“…We would be better off having had only 1 system, either DSM-IV or ICD-10, than we are having both.

What, if anything, can be done to bring DSM-V and ICD-11 into a more harmonious relationship? The best solution would be a clear division of labor. The DSM criteria sets have become the de facto international standard for research use. ICD-10, on the other hand, is often used outside the United States by mental health professionals and primary care clinicians. DSM-V could continue to provide its detailed criteria sets for clinical and research use. ICD-11 would provide brief prototypal narratives adapted from these criteria sets that would be much easier to use in those clinical settings where simplicity is a priority. DSM-V would give up on having its own primary care version, which is no great loss since the one developed for DSM-IV is not much used. ICD-11 would give up its research version, which is also not widely used. Neither system would lose anything essential and the world would be spared the current confusion. The DSM-V criteria sets and the ICD-11 prototypic descriptions would be at different levels of detail-nested and without conflict.

Is this possible? The signs to date do not encourage optimism that integration of the 2 systems will occur. Thus far, this has not been a priority for the DSM-V leadership, and there has been no concerted effort at harmonization. The original publication date for both DSM-V and ICD-11 in 2012 would have meant that the clock had probably run out.

It is possible, however, that a new opportunity for integration may now open up. ICD-11 has been postponed until at least 2014. Although the DSM-V Task Force may not fully realize it yet, its planned publication deadline in May, 2012 appears impossible to meet and is also remarkably inconvenient given a coding change required in October 2013.2 If, as seems necessary, the DSM-V publication date is postponed for a year or more, there will be sufficient time to join the systems in a nested alignment. This would be the most welcome and enduring legacy of both DSM-V and ICD-11…”

These suggestions are likely to provoke further responses on Psychiatric Times online in the coming weeks.

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In September 2008, Robert Spitzer, MD, (who had chaired the DSM-III Task Force and has also contributed to these exchanges) compared the transparency of the WHO with that of the current DSM revision Task Force. In Psychiatrists Revise Diagnostic Manual – In Secret Spitzer wrote:

“It should be noted that in contrast to this new APA confidentiality policy, which discourages DSM-V members from providing information about the ongoing revision process, the World Health Organization has adopted the opposite policy with regard to its development of ICD-11. Minutes of all ICD-11 meetings are posted on the WHO website without any restrictions on who can have access…”

But contrary to Spitzer’s vision of an open and transparent ICD revision process, the WHO does not appear to be publishing minutes of all ICD-11 meetings on its website other than having posted summary reports of the first three meetings of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders. A fourth meeting took place 1-2 December 2008 (with a fifth meeting scheduled for late September) but the WHO has yet to publish a summary report of the Advisory Group’s last meeting, held in Geneva, over nine months ago.

With the exception of Rare Diseases, which has its own internet platform and does publish minutes, progress being made by other Topic Advisory Groups (TAGs), to date, remains obscure, so I cannot agree with Dr Spitzer’s perceptions.

ICD Revision Steering Group chair, Dr Christopher Chute, has been asked to clarify when a summary of the proceedings of this December 2008 meeting will be published and to provide a list of members of the ICD-DSM Harmonization Group, since this information has not been made available on the WHO website nor via the website of the APA.

Dr Chute has also been asked whether a Topic Advisory Group for Neurology is operative and to provide a list of the names of its chair and members; to identify chairs and members of any work group(s) that have already been set up under the Neurology TAG and to clarify what is (or will be) the channel of communication for interest groups wishing to communicate with, or submit proposals to the TAG for Neurology – again, this information is not available from the WHO website, nor is any information on the more recently formed TAGs to be found on the WHO website or on the WHO ICD Update and Revision Platform intranet.

I hope to be in a position to provide an update, shortly.

(See update: 18 September 2009:  Summary Report: 4th Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders )

Latest proposals from the Somatic Symptom Disorders Work Group:

The April 2009 report of the APA DSM-V Somatic Distress Disorders Work Group (also known as the Somatic Symptom Disorders Work Group) can be read here: http://tinyurl.com/DSMSDDWGApril09

The Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary reportby DSM-V Work Group members, Joel Dimsdale and Francis Creed, published in the June issue of the Journal of Psychosomatic Research expands on the proposals in the April 2009 update.

Free access to both text and PDF versions of the Editorial here:

http://download.journals.elsevierhealth.com/pdfs/journals/0022-3999/PIIS0022399909000889.pdf

http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

ME agenda DSM-V and ICD-11 Directory page:  https://meagenda.wordpress.com/dsm-v-directory/

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