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
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