DSM-5 Somatic Symptoms Disorders work group publishes SSD field trial data

Post #272 Shortlink: http://wp.me/pKrrB-3ke

Update: Somatic Symptom Disorder: An important change in DSM. is now published in the September 2013 issue, J Psychosom Res. A subscription or payment is required to access this paper.

http://www.ncbi.nlm.nih.gov/pubmed/23972410

J Psychosom Res. 2013 Sep;75(3):223-8. Epub 2013 Jul 25.
Dimsdale JE, Creed F, Escobar J, Sharpe M, Wulsin L, Barsky A, Lee S, Irwin MR, Levenson J.

DSM-5 Somatic Symptoms Disorders work group publishes SSD field trial data…behind a paywall

Reports on the findings of the DSM-5 field trials have been slow to emerge.

Kappa results trickled out in dribs and drabs; work group chairs presented limited field trial data at the APA’s 2012 Annual Meeting. There remains a paucity of information on field trial study protocols, patient selection, field test results and analysis.

This is of particular concern where radical changes to DSM-IV definitions and criteria were introduced into DSM-5 and are now out there in the field.

A good example is the new DSM-5 “Somatic Symptom Disorder” category, where there is no substantial body of evidence for the reliability, validity, prevalence, safety, acceptability and clinical utility of the implementation of this new disorder construct – though that did not stop them barrelling it through to the final draft.

In its paper, the SSD Work Group acknowledges the “small amount of validity data concerning SSD”; that much “remains to be determined” about the utility and reliability of the specific SSD criteria and its thresholds when applied in busy, general clinical practice and that there are “vital questions that must be answered” as they go forward.

They don’t sound any too confident about what they’ve barrelled through; but neither do they seem overly concerned.

With remarkable insouciance, SSD Work Group Chair, Joel E Dimsdale, told ABC journalist, Susan Donaldson James, “…If it doesn’t work, we’ll fix it in the DSM-5.1 or DSM-6.” (ABC News, February 27, 2013).

Cavia15The implementation of SSD in the DSM-5 is a Beta trial; the public – adults and children – unwitting guinea pigs.

Members of the DSM-5 Somatic Symptoms Disorders Work Group have just published a report – Somatic Symptom Disorder: An important change in DSM.

APA owns the output of the DSM-5 work groups but this report isn’t posted on the APA’s DSM-5 Development site or on the Field Trials or DSM-5 Resources pages.

It’s being published (currently In Press) in the Journal of Psychosomatic Research, for which DSM-5 SSD Work Group member, James Levenson, is a Co-Editor and for which SSD Work Group member, Francis Creed, a past Editor.

Unless you are a subscriber to JPS or have institution access you will need to cough up $30 to access this paper.

DSM-5 Task Force’s Regier and Kupfer have been banging on for years about how transparent the development process for this most recent iteration of the DSM has been. Yet reports on field trial findings and analysis of studies cited in support of the introduction of radical new constructs for DSM are stuffed behind paywalls.

Why are DSM-5 work group reports not being published on the DSM-5 Development website or other APA platforms or published in journals under Creative Commons Licenses, for ease of public accessibility, professional and consumer stakeholder scrutiny and discussion, and for accountability?

The development of ICD-11 is also being promoted by WHO’s Bedirhan Üstün as an open and transparent process.

But emerging proposals from the two working groups charged with making recommendations for revision of ICD-10′s Somatoform Disorders (the Primary Care Consultation Group, chaired by Prof Sir David Goldberg and the WHO Expert Working Group on Somatic Distress and Dissociative Disorders, chaired by Prof Oje Gureje) were also published, last year, in subscription journals and subject to those journals’ respective copyright restrictions [1] [2].

1. Lam TP et al. Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Fam Pract. 2013 Feb;30(1):76-87. [Abstract: PMID:22843638]
2. Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry 2012;24:556-67. [Abstract: PMID: 23244611]

Why are ICD-11 working group progress reports on emerging proposals for potential new ICD disorders and focus group study reports not being published on platforms accessible, without payment, to all classes of ICD stakeholder?

The SSD Work Group paper is authored by Joel E Dimsdale (Chair), Francis Creed, Javier Escobar, Michael Sharpe, Lawson Wulsin, Arthur Barsky, Sing Lee, Michael R. Irwin and James Levenson.

[Although not a member of the SSD Work Group, Javier Escobar is Task Force liaison to the SSD work group and works closely with the group. Francis J Keefe (not included in the paper’s authors) is a member of the SSD Work Group. Nancy Frasure-Smith (not included in the paper’s authors) served as a member of the Work Group from 2007-2011 and was not replaced following withdrawal.]

The paper describes the DSM-5 Work Group’s rationale for the new SSD diagnosis (which replaces four DSM-IV categories); defines the construct, discusses field trial kappa data (inter-rater reliability), presents limited data for validity of SSD, clinical utility and potential prevalence rates, and briefly discusses tasks for future research, education and clinical practice.

http://www.jpsychores.com/

July 2013, Vol. 75, No. 1

In Press

Somatic Symptom Disorder: An important change in DSM

29 July 2013

Joel E. Dimsdale, Francis Creed, Javier Escobar, Michael Sharpe, Lawson Wulsin, Arthur Barsky, Sing Lee, Michael R. Irwin, James Levenson

Received 4 April 2013; received in revised form 27 June 2013; accepted 29 June 2013. published online 29 July 2013.

Corrected Proof

doi:10.1016/j.jpsychores.2013.06.033

Abstract: http://www.jpsychores.com/article/S0022-3999(13)00265-1/abstract [Free]

Full text: http://www.jpsychores.com/article/S0022-3999(13)00265-1/fulltext  [Paywall]

References: http://www.jpsychores.com/article/PIIS0022399913002651/references  [Paywall]


Commentaries on Somatic Symptom Disorder in recent journal papers

In the June 2013 edition of Journal of Nervous and Mental Disorders, Allen Frances, MD, who chaired the Task Force for DSM-IV, discusses his concerns for the loosely defined DSM-5 category, Somatic Symptom Disorder, sets out his suggestions for revising the criteria prior to finalization, as presented to the SSD Work Group chair, in December 2012, and advises clinicians against using the new SSD diagnosis.

http://www.ncbi.nlm.nih.gov/pubmed/23719325

DSM-5 Somatic Symptom Disorder.

Frances A.

Department of Psychiatry, Duke University, Durham, NC.

J Nerv Ment Dis. 2013 Jun;201(6):530-1. doi: 10.1097/NMD.0b013e318294827c. No abstract available.

PMID: 23719325

+++

Commentary by Allen Frances, MD, and Suzy Chapman in the May 2012 issue of Australian and New Zealand Journal of Psychiatry. The paper discusses the over-inclusive DSM-5 Somatic Symptom Disorder criteria and the potential implications for diverse patient groups. The paper concludes by advising clinicians not to use the new SSD diagnosis.

http://www.ncbi.nlm.nih.gov/pubmed/23653063

DSM-5 somatic symptom disorder mislabels medical illness as mental disorder.

Allen Frances¹, Suzy Chapman²

1 Department of Psychiatry, Duke University 2 DxRevisionWatch.com

Aust N Z J Psychiatry. 2013 May;47(5):483-4. doi: 10.1177/0004867413484525. No abstract available.

PMID: 23653063

+++

The April 22, 2013 edition of Current Biology published a feature article on DSM-5 by science writer, Michael Gross, Ph.D. The article includes quotes from Allen Frances, MD, and Suzy Chapman on potential implications for patients for the application of the new DSM-5 Somatic Symptom Disorder. The article includes concerns for the influence of Somatic Symptom Disorder on proposals for a new ICD category – Bodily Distress Disorder – being field tested for ICD-11.

Current Biology 22 April, 2013 Volume 23, Issue 8

Copyright 2013 All rights reserved. Current Biology, Volume  23, Issue  8, R295-R298, 22 April 2013

doi:10.1016/j.cub.2013.04.009

Feature

Has the manual gone mental?

Michael Gross

Full text: http://www.cell.com/current-biology/fulltext/S0960-9822(13)00417-X

PDF: http://download.cell.com/current-biology/pdf/PIIS096098221300417X.pdf

+++

In a BMJ opinion piece, published March 2013, Allen Frances, MD, opposes the new Somatic Symptom Disorder, discusses lack of specificity, data from the field trials, and advises clinicians to ignore this new category.

http://www.ncbi.nlm.nih.gov/pubmed/23511949

The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill.

Frances A.

Allen Frances, chair of the DSM-IV task force

BMJ. 2013 Mar 18;346:f1580. doi: 10.1136/bmj.f1580. No abstract available.

PMID: 23511949

[PubMed – indexed for MEDLINE]

+++
Somatic Symptom Disorder is also included in Saving Normal: An Insider’s Revolt Against Out-Of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life (pp. 193-6): Allen Frances, William Morrow & Company (May 2013).

Also Essentials of Psychiatric Diagnosis: Responding to the Challenge of DSM-5 (Chapter 16): Allen Frances, Guilford Press (June 2013).

+++

Further reading

APA Somatic Symptom Disorder Fact Sheet APA DSM-5 Resources

Somatic Chapter Drops Centrality Of Unexplained Medical Symptoms Psychiatric News, Mark Moran, March 1, 2013

Somatic Symptoms Criteria in DSM-5 Improve Diagnosis, Care David J Kupfer, MD, Chair, DSM-5 Task Force, defends the SSD construct, Huffington Post, February 8, 2013

The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill Allen Frances, MD, BMJ 2013;346:f1580 BMJ Press Release

Somatic Symptom Disorder could capture millions more under mental health diagnosis Suzy Chapman, May 26, 2012

Mislabeling Medical Illness As Mental Disorder Allen Frances, MD, Psychology Today, DSM 5 in Distress, December 8, 2012

Why Did DSM 5 Botch Somatic Symptom Disorder? Allen Frances, MD, Psychology Today, Saving Normal, February 6, 2013

New Psych Disorder Could Mislabel Sick as Mentally Ill Susan Donaldson James, ABC News, February 27, 2013

Dimsdale JE. Medically unexplained symptoms: a treacherous foundation for somatoform disorders? Psychiatr Clin North Am 2011;34:511-3. [PMID: 21889675]

Final day: Submissions to third DSM-5 stakeholder review

Final day: Submissions to third DSM-5 stakeholder review

Post #183 Shortlink: http://wp.me/pKrrB-2fn

The third and final stakeholder review is scheduled to close today, Friday, June 15.

I am collating copies of submissions on these pages.

A copy of my own comment is published below in text and PDF format. If you are unable to submit your own letter or short of time, please consider endorsing Mary Dimmock’s submission or one of the other submissions or one from last year with a note to say that although the criteria have been revised since last year, the underlying concerns remain.

 

Submission from UK advocate Suzy Chapman

Full text in PDF:     Chapman DSM-5 submission 2012

For the attention of the Somatic Symptom Disorders Work Group: Chair Joel E. Dimsdale, M.D.

Submitted by Suzy Chapman, advocate and parent/carer of young adult with chronic illness.
Website owner of https://dxrevisionwatch.wordpress.com formerly http://dsm5watch.wordpress.com

Submission in response to J 00 Somatic Symptom Disorder

I note that at June 14, APA has published no report on the results of the DSM-5 field trials. The majority of stakeholders wishing to provide feedback on this third release of draft proposals have no information on the make-up of the SSD study groups, the numbers studied within each of the three arms or the resulting data.

  • Stakeholders have been obliged to submit comment without the benefit of scrutiny of field trial results to inform their submissions. This is not acceptable.

For the first and second release of draft proposals, a 7 page “Disorders Description” document and a 14 page “Rationale/Validity Propositions/Justification of Criteria” document accompanied proposals and expanded on the website Proposals, Criteria, Rationale and Severity content for this category section. In the case of the latter, this included five pages of references to published and unpublished papers, including a number of papers authored or co-authored by members of the SSD Work Group. With the release of this third and final draft, no updated versions of these two documents were published that reflect significant revisions to SSD criteria between the second and third draft. The unrevised versions have been removed from the website.

  • Stakeholders have been denied access to the more expansive rationales and validity propositions set out within these two documents, the research papers that have been relied on and more detailed explanations for the revisions made to criteria between the second and third iterations in response to field trial results and internal/external input. If the Work Group considered these documents essential background information for the first and second drafts it is unreasonable not to have provided stakeholders with updated versions for this third draft.

The “Rationale/Validity Propositions/Justification of Criteria” document (as published May 4, 2011, for the second public review) states:

“…It is unclear how these changes would affect the base rate of disorders now recognized as somatoform disorders. One might conclude that the rate of diagnosis of CSSD would fall, particularly if some disorders previously diagnosed as somatoform were now diagnosed elsewhere (such as adjustment disorder). On the other hand, there are also considerable data to suggest that physicians actively avoid using the older 6 diagnoses because they find them confusing or pejorative. So, with the CSSD classification, there may be an increase in diagnosis.”

Continued on Page 2

Patient submissions to third and final DSM-5 stakeholder review

Patient submissions to third and final DSM-5 stakeholder review

Post #182 Shortlink: http://wp.me/pKrrB-2f5

This third and final stakeholder review is scheduled to close on Friday. If an extension is announced I will update.

As with the two previous draft reviews, in 2010 and 2011, I am collating copies of submissions on these pages.

If you have submitted to the Somatic Symptom Disorder proposals or are a professional, professional body or advocacy organization that has submitted a general response which includes reference to the  Somatic Symptom Disorder proposals I would be pleased to receive a copy for publication on this site. Submissions will be published subject to review and posted in PDF format if more than a few pages long.

The most recent submission received is from “US patient 1”. This is a detailed response which I am publishing in both text and PDF format. (Note that as far as I can see submissions can only be uploaded to the DSM-5 Development site using the RT or html text editor and not as file attachments.)

Submission from US patient 1 to J 00 SSD and J 02 Conversion Disorder (FNSD)

Full text in PDF:    DSM-5 submission

To: DSM-5 Task Force, Somatic Symptom Disorders Work Group
From: _______
Re: Response on the Proposals for Somatic Symptom Disorder and Conversion Disorder
Date: June 12, 2012

The DSM-5 Task Force has thus far failed to address the conceptual and practical problems inherent in DSM-IV somatoform disease constructs. Specifically, its proposals for Somatic Symptom Disorder and Conversion Disorder are actually more flawed than their equivalents in DSM-IV. The criteria for these two diagnoses rely excessively upon purely subjective judgments by clinicians and on the extent of a clinician’s awareness of known diseases, and lack the specificity required of valid diagnostic constructs.

To understand just how strongly subjectivity of clinical interpretation can impact diagnostic outcome when using somatoform disorder criteria on a disease with unknown etiology, it is instructive to consider in some detail Johnson et al’s “Assessing Somatization Disorder in Chronic Fatigue Syndrome”1, a study on the reliability of DSM-III-R somatization disorder (SD) criteria and related instruments when applied to patients with chronic fatigue syndrome (CFS). As the DSM-III-R SD diagnostic construct was less subjective and had greater specificity in terms of symptom presentation than the proposed SSD criteria, a careful examination of its flaws, as demonstrated by this study, offers a sobering perspective on real world application of SSD criteria.

CFS is a somatic disease of unestablished etiology; the United States Centers for Disease Control has stated that “Research shows that CFS is not a form of psychiatric illness” and that an essential criterion for its diagnosis is “severe chronic fatigue of 6 months or longer that is not explained by any medical or psychiatric diagnosis”. Nevertheless, in spite of such evidence, an opinion persists in the medical community that CFS is in some way a psychosomatic illness, an opinion which can easily influence clinicians in their diagnoses of patients who satisfy CFS criteria. Thus, as Johnson et al noted: “Whether or not symptoms of CFS are considered medically caused will strongly affect the incidence of SD within the CFS population…If the examiner recognizes that the patient’s CFS symptoms indicate a physical illness, the diagnosis of SD may not be made. Conversely, if the examiner does not consider CFS a medical illness, the patient’s symptom endorsement may lead to the diagnosis of SD.”

To begin with, Johnson et al discussed the problems with the DSM-III-R criteria for somatization disorder:

“According to DSM-III-R .. the diagnosis of somatization disorder (SD) requires a person to present with at least 13 symptoms for which no significant organic pathology can be found. The symptoms must have caused the person to take medication, to see a physician, or to have altered her/his lifestyle. The disorder begins before the age of 30 and has a chronic but fluctuating course. However, the diagnosis of SD is extremely problematic in terms of its validity because it involves a series of judgments that can be arbitrary and subjective […] Specifically, the interviewer must decide if the symptom reported is attributable to an identifiable medical illness. Although such judgments are extremely difficult to make uniformly, the influence of bias introduced by the interviewer’s orientation on the prevalence of SD has not been adequately addressed.”

They noted the high variation between the estimates of SD prevalence in CFS patient cohorts reported by previous studies and concluded that it was “in itself indicative of the problem in defining SD”. They further pointed out that “The difficulty in distinguishing among somatic symptoms that are psychiatric vs. organic in origin can result in overdiagnosis of SD in medical illness, particularly chronic illness”, as they had observed in several studies by other authors on somatization in CFS.

Final 2 days: Submissions to third DSM-5 stakeholder review

 

Final 2 days for Submissions to third DSM-5 stakeholder review

Post #181 Shortlink: http://wp.me/pKrrB-2eX

There are only Thursday and Friday left before this third and final stakeholder review of proposals for DSM-5 categories and diagnostic criteria closes.

APA has failed to publish “full results” of its field trials – obliging professional, patient and public stakeholders to submit comment without the benefit of scrutinizing field trial data. That’s another APA schedule missed.

If any extension to the comment period is announced I will update.

The DSM-5 Development site has been slow to load, today, probably due to volume of traffic for both US and UK visitors and in some cases, not loading at all. If you are having problems try pulling up a page other than the Home Page and allow several minutes to load.

As with the two previous reviews, I am collating copies of submissions on these pages.

If you have submitted to the Somatic Symptom Disorder proposals or are a professional, professional body or advocacy organization that has submitted a general response which includes reference to the  Somatic Symptom Disorder proposals I would be pleased to receive a copy for publication on this site, subject to review, and posted in PDF format if more than a few pages long.

The most recent published submission is from “Joss”:

Submission from UK patient, Joss

I am writing to voice my concerns concerning the proposed category of Somatic Symptom Disorder.

Theoreticians of illness classification such as yourselves should be aware of the actual harm that could be caused to real people should this category be included in the DSM.

I would like to focus your minds with a real world example of how such a label might cause actual harm:

In 1998 I hurt my back. A scan showed a herniated disc but no further action was considered necessary. For the next three years my life was devastated by pain, I had bedsores and was pissing myself in bed from being unable to move. I believe that this was not taken seriously because I already had a pre-existing diagnosis of ME/CFS. The disbelief around my ME/CFS had already caused me problems obtaining the necessary help from medical services.

I believe that doctors thought I was ‘catastrophising’ and that had the SSD label been available to them they would have been able to categorise me as having:

‘Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns’

and, further, apply the three following highly subjective statements to me:

(1) Disproportionate and persistent thoughts about the seriousness of one’s symptoms.

(2) Persistently high level of anxiety about health or symptoms

(3) Excessive time and energy devoted to these symptoms or health concerns

I had CBT via a pain clinic but things got progressively worse. The CBT was of no help because it can not mend discs. I was, I admit, by this time feeling a tad suicidal because nobody would listen to me or believe that things were as bad as they were.

In 2001 I called an ambulance and went to the emergency department. The doctor was fine until he consulted my notes and saw I had an ME/CFS diagnosis. I was given morphine and they wanted to send me home.

It was only by refusing to leave that I gained admission to the hospital where a further scan was undertaken and it was found that a piece of disc had got in to my spinal canal and was pressing on my spinal cord. The next day I was in surgery and told that I would have been paralysed for life without it.

I would like you to reflect on how much worse the situation might have been if I had also been labelled as having SSD and on what happens when the SSD label is wrongly applied.

If someone is very ill and in pain is it not normal to feel distressed? How much distress is too much? Who decides what the right amount of distress for any given situation is?

What does ‘disproportionate’ mean in such a situation?

Is feeling anxious about such things not simply a normal and sane reaction to such circumstances?

And as for ‘excessive time and energy’ – well being bedridden and unable to move for whatever reason makes it a little hard to think of much else for much of the time.

To take such a lack of understanding of subjective experience of severe physical symptoms and construct a spurious and vague illness category from them is not only philosophically flawed it is dangerous to those who may be labelled in such a way.

This definition is far too vague and leaves far too much room for definitional ‘creep’, misinterpretation, misuse and even abuse.

It could certainly lead to possible missed diagnosis should a patient be placed in the SSD group and then continually disbelieved because of the label and left with no hope of getting to the bottom of the problem. To leave people without hope can only be called cruel

I am concerned that many illnesses such as ME/CFS, fibromyalgia and pain syndromes, and back problems which are often hard to diagnose and treat and can be a considerable burden to those who have to live with them will get drawn into the SSD basket and that, once there, patients will lose all hope of receiving any appropriate bio-medical treatment.

I am sure you are aware that medicine does move forward and that many illnesses once defined as psychiatric or psychological or simply beyond the reach of scientific clarity are now no longer considered ‘medically unexplained’. Just because there is currently no ‘medical’ explanation for a specific symptom and no understanding of how somebody might experience that symptom does not automatically render it a problem for psychology or psychiatry.

DSM-5 in New Scientist: Psychiatry’s new diagnostic bible is creating headaches for doctors and patients alike

DSM-5 in New Scientist: “Psychiatry’s new diagnostic bible is creating headaches for doctors and patients alike”

Post #171 Shortlink: http://wp.me/pKrrB-293

A reminder that this third and final stakeholder review and comment period is scheduled to close on June 15.

On May 17, APA added the following statement to the home page of the DSM-5 Development site.

APA Position Statement on DSM-5 Draft Diagnostic Criteria

The official position of the APA on draft DSM-5 diagnostic criteria is that they are not to be used for clinical or billing purposes under any circumstances. They are published on the http://www.dsm5.org Web site to obtain feedback on these preliminary DSM-5 Task Force proposals from mental health professionals, patients, and the general public. They have not received official reviews or approval by the APA Board of Trustees and will not be available for clinical use or billing purposes until May 2013.

Two articles in this week’s online and print editions of New Scientist.

The first report, by Peter Aldhous, quotes Allen Frances, MD, who had chaired the development of the DSM-IV; APA research director and DSM-5 Task Force Vice Chair, Darrel Regier, and Dr Dayle Jones who is tracking DSM-5 for the American Counseling Association, on DSM-5 field trial kappa results and the relegation of Attenuated psychosis syndrome and Mixed anxiety/depression to the DSM-5 appendix.

This article is behind a paywall or a subscription to the print edition.

New Scientist 19 May 2012

Page 6 print edition

THIS WEEK/MENTAL HEALTH

Psychiatry’s new diagnostic bible is creating headaches for doctors and patients alike

Online title Trials highlight worrying flaws in psychiatry ‘bible’

Peter Aldhous

Diagnosis: uncertain

HOW reliable is reliable enough?

The second article, “OPINION ‘Label jars, not people”, by James Davies, is accessible on the New Scientist website without payment or print edition subscription.

New Scientist 19 May 2012

Page 7 print edition

OPINION | James Davies

James Davies is a senior lecturer in social anthropology and psychotherapy at the University of Roehampton, London

‘Label jars, not people’

“LABEL jars, not people” and “stop medicalising the normal symptoms of life” read placards, as hundreds of protesters – including former patients, academics and doctors – gathered to lobby the American Psychiatric Association’s (APA) annual meeting.

The demonstration aimed to highlight the harm the protesters believe psychiatry is perpetrating in the name of healing. One concern is that while psychiatric medications are more widely prescribed than almost any drugs in history, they often don’t work well and have debilitating side effects. Psychiatry also professes to respect human rights, while regularly treating people against their will. Finally, psychiatry keeps expanding its list of disorders without solid scientific justification…

Read full article

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