Submissions in response to DSM-5 draft criteria from Suzy Chapman

Submissions in response to DSM-5 draft criteria from Suzy Chapman

Post #38 Shortlink: http://wp.me/pKrrB-Gd

Submissions

Patient organisations, professionals and advocates submissions are being collated on this dedicated Dx Revision Watch page: http://wp.me/PKrrB-AQ 

If you would like your submission added please get in touch via the Contact form

In response to: Somatic Symptom Disorders > Complex Somatic Symptom Disorder

Although the Diagnostic and Statistical Manual of Mental Disorders does not have quite the relevance for UK and some European patient populations, since ICD Chapter V is used in some countries in preference to the DSM, diagnostic criteria in the forthcoming edition will shape the international research and literature landscape and influence not only how disorders are defined for international research purposes but how patients and their needs are perceived by those responsible for their medical treatment and social care. It is hoped then, that the views of those submitting responses to the preliminary draft proposals from outside the USA will be afforded due consideration.

I submit the following comments and concerns with regard to:

Somatic Symptom Disorders > Complex Somatic Symptom Disorder

I welcome the decision of the Task Force to extend review of the preliminary draft revisions to the lay public as well as to APA members, clinicians, health professionals, researchers, administrators and other end users and for the Task Force’s recognition that patients, their carers, families and advocates and the patient organisations that represent their interests are crucial stakeholders in any consultation process. Their input merits particular consideration given the absence of patient representation within the individual Work Groups.

Since 2007, when the initial Work Groups were first assembled, the infrequency of reports and their brevity and lack of detail has made it difficult for those outside the field and the lay public to monitor the progress of the various Work Groups. Some Work Groups, for example, this group for Somatic Symptom Disorders, have published reports and editorials in subscription journals which are not readily available to those outside the field and without access to journal papers.

It would have been helpful if the publication of the free access Editorial: Dimsdale J, Creed F: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report on behalf of the Somatic Symptom Disorders Work Group in the June ’09 edition of J Psychosom Res, 66 (2009) 473–476, which discussed and expanded on the proposals in your brief April ’09 progress update, could have been noted on the Somatic Symptom Disorders Work Group Progress Report page for wider dissemination.

It might be considered a purely tokenistic gesture by the Task Force to extend involvement in the DSM-5 development process to the lay public if they are unable to inform themselves around the deliberations of the groups charged with revision because they are largely excluded from the literature, symposia, conferences and workshops where discussions around proposals are taking place. They therefore rely on more detailed reports, and the paucity and sketchiness of Work Group reports to date has disappointed.

I acknowledge that the Task Force has had to balance opening up the draft proposals review exercise to a wide range of stakeholders against conducting a more restricted consultation process in which responses are collated, published and responded to. It is, however, disconcerting for both professionals and the lay public to tender responses into which considerable effort may have been invested if there is no feedback on how those comments, concerns and suggestions have been received by the respective Work Groups and in the knowledge that their submissions will not be visible for scrutiny by other stakeholders, since there appear to be no plans for aggregating and publishing summaries of the key areas of concern for each set of Work Group proposals.

Given that major changes in diagnostic nomenclature are being proposed for the revision of DSM-IV “Somatoform Disorders” categories, does the Work Group plan to publish an update on any reconsiderations and modifications the group intends to adopt before finalising proposals in readiness for field trials and in the interests of transparency, will it also note key areas of concern for which the Work Group does not intend to make accommodations?

Complex Somatic Symptom Disorder

There is considerable concern amongst international patient organisations and advocates for the implications of the “Somatic Symptom Disorders” Work Group proposal for combining Somatoform Disorders, Psychological Factors Affecting Medical Condition (PFAMC), and Factitious Disorders under a common rubric – “Somatic Symptom Disorders”, and for the creation of a new classification, “Complex Somatic Symptom Disorder” (CSSD).

Professionals in the field, interest groups and the media have been voicing concerns for the last couple of years that proposals for the broadening of criteria for some DSM categories would bring many more patients under a mental health diagnosis.

But if these major revisions to the “Somatoform Disorders” categories were to be approved there would be medical, social and economic implications to the detriment of all patient populations and especially those bundled by many of your colleagues within the field of liaison psychiatry and psychosomatics under the so-called “Functional Somatic Syndromes” (FSS) and “Medically Unexplained Syndromes” (MUS) umbrellas.

The Somatic Symptom Disorders Work Group’s proposal to redefine “Somatoform Disorders” would legitimise the potential for the application of an additional diagnosis of “Somatic Symptom Disorder” to all medical diseases and disorders, whether diagnosed general medical disorders, psychiatric disorders or so-called “unexplained medical symptoms and syndromes”; dual-diagnosing general medical conditions under the guise of “eliminating mind-body dualism.”

There are significant concerns for the implications for patients with Chronic fatigue syndrome, ME, Fibromyalgia, IBS, chemical injury, chemical sensitivity, chronic Lyme disease and GWS.

In the June ’09 Journal of Psychosomatic Research Editorial “The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report”, which expanded on the group’s brief April report, Chair, Joel Dimsdale, MD, and fellow Work Group member, Francis Creed, MD, reported that by doing away with the “controversial concept of medically unexplained”, the proposed classification might diminish “the dichotomy, inherent in the ‘Somatoform’ section of DSM-IV, between disorders based on medically unexplained symptoms and patients with organic disease.”

The conceptual framework the group were proposing, at that point:

“…will allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome.”

Javier Escobar, MD, Director of the University of Medicine and Dentistry of New Jersey (UMDNJ) – Robert Wood Johnson Medical School (RWJMS) Medically Unexplained Physical Symptoms (MUPS) Research Center, which has been supported with over $4M in funding by the National Institute of Mental Health (NIMH) is a DSM-5 Task Force member. It is understood that Dr Escobar serves as a Task Force liaison to the Somatic Symptom Disorders Work Group and is said to work closely with your group [1].

In the August ’08, Psychiatric Times Special Report “Unexplained Physical Symptoms: What’s a Psychiatrist to Do?” [2] co-authors, Escobar and Marin, wrote:

“…Perhaps as a corollary of turf issues, general medicine and medical specialties started carving these syndromes with their own tools. The resulting list of ‘medicalized’, specialty-driven labels that continues to expand includes fibromyalgia, chronic fatigue syndrome, multiple chemical sensitivity, and many others.”

“…These labels fall under the general category of functional somatic syndromes and seem more acceptable to patients because they may be perceived as less stigmatizing than psychiatric ones. However, using DSM criteria, virtually all these functional syndromes would fall into the somatoform disorders category given their phenomenology, unknown physical causes, absence of reliable markers, and the frequent coexistence of somatic and psychiatric symptoms.”

In Table 1, under the heading “Functional Somatic Syndromes (FSS)” Escobar and Marin list:

“Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple chemical sensitivity, Nonspecific chest pain, Premenstrual disorder, Non-ulcer dyspepsia, Repetitive strain injury, Tension headache, Temporomandibular joint disorder, Atypical facial pain, Hyperventilation syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain, Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome, Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness, Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast infection, Total allergy syndrome”

This radical proposal for a “Complex Somatic Symptom Disorder” category will provide a convenient dustbin into which these diverse disorders might be shovelled.

It will expand the markets for antidepressant and antipsychotic drugs and therapies such as CBT to address perceptions of

           …poor adjustment…disproportionate distress and disability…dysfunctional and maladaptive response…unhelpful illness beliefs…activity avoidance…psychological distress in the wake of a general medical condition…personality traits…poor coping strategies contributing to worsening of a medical condition…sick role behaviour…secondary gains…

and other perceived barriers to “adjustment” or “rehabilitation”.

It will provide an attractive means of reducing the financial burden to governments and health insurers of providing appropriate medical investigations, medical treatments, financial and social support.

Whilst the proposals suggest that:

“a diagnosis of CSSD is inappropriate in the presence of only unexplained medical symptoms. Similarly, in conditions such as irritable bowel syndrome, CSSD should not be coded unless the other criterion (criterion B—attributions, etc) is present”

the application of an additional diagnosis of “Complex Somatic Symptom Disorder” will be based on subjective measures of whether the patient is perceived as having “dysfunctional and maladaptive beliefs” or “cognitive distortions” about their symptoms or disease resulting in “Misattributions [and] excessive concern or preoccupation with symptoms and illness”, whether the patient is “catastrophising” or has adopted “the sick role”.

Misidentification will increase the application of inappropriate treatment regimes – antidepressants and antipsychotic drugs, and therapies such as CBT to modify “dysfunctional and maladaptive beliefs” about the patient’s symptoms and disease, and behavioral techniques and “to alter illness and sick role behaviors and promote more effective coping”.

Get it wrong and patients are exposed to the risk of iatrogenic disease.

Get it wrong and there will be implications for the securing of health insurance, welfare, social care packages, disability and workplace adaptations and provision of education tailored to the needs of children too sick to access mainstream school.

Get it wrong and families will be put at increased risk of wrongful accusation of “factitious disorder by proxy/factitious disorder on other”.

Get it wrong and practitioners are at risk of litigation.

The CFIDS Association of America [3] has submitted:

“As drafted, the criteria for CSSD establish a “Catch-22” paradox in which six months or more of a single or multiple somatic symptoms – surely a distressing situation for a previously active individual – is classified as a mental disorder if the individual becomes “excessively” concerned about his or her health. Without establishing what “normal” behavior in response to the sustained loss of physical health and function would be and in the absence of an objective measure of what would constitute excessiveness, the creation of this category poses almost certain risk to patients without providing any offsetting improvement in diagnostic clarity or targeted treatment.”

and

“This is especially true with regard to patients coping with conditions characterized by unexplained medical symptoms, or individuals with medical conditions that presently lack a mature clinical testing regimen that provides the evidence required to substantiate the medical seriousness of their symptoms. For instance, all of the case definitions for CFS published since 1988 have required that in order to be classified/diagnosed as CFS, symptoms must produce substantial impact on the patient’s ability to engage in previous levels of occupational, educational, personal, social or leisure activity. Yet, all of the case definitions rely on patient report as evidence of the disabling nature of symptoms, rather than results of specific medical tests. So by definition, CFS patients will meet the CSSD criteria A and C for somatic symptoms and chronicity, and by virtue of the lack of widely available objective clinical tests sensitive and specific to its characteristic symptoms, CFS patients may also meet criterion B-4.”

The UK patient organisation, the 25% ME Group [4] has submitted:

“There is international concern that the proposed diagnostic category of CSSD as it is currently defined will be used to incorrectly diagnose ME/CFS patients with a psychiatric disorder.”

and

“It is of note that the draft of the proposed new category of CSSD states: “Having somatic symptoms of unclear aetiology is not in itself sufficient to make this diagnosis. Some patients, for instance with irritable bowel syndrome or fibromyalgia would not necessarily qualify for a somatic symptoms disorder diagnosis” (APA Somatic Symptom Disorders, 29th January 2010) but no such assurance is offered with respect to ME/CFS. This needs to be rectified.”

I call on the Somatic Symptom Disorders Work Group to give urgent reconsideration to their proposal for a new category “Complex Somatic Symptom Disorder” – while there’s still time to put it right.

Suzy Chapman, UK patient advocate

[1] Escobar, Javier I., M.D., M.Sc. DSM-5 Task Force Member Biosketch and Disclosure information:
http://www.dsm5.org/MeetUs/Documents…%201-11-10.pdf

[2] Marin H, Escobar JI: Unexplained Physical Symptoms What’s a Psychiatrist to Do? Psychiatric Times. Aug 2008, Vol. 25 No. 9: http://www.psychiatrictimes.com/disp…/10168/1171223

[3] CFIDS Association of America submission to the DSM-5 public review: http://www.cfids.org/advocacy/2010/dsm5-statement.pdf

[4] 25% ME Group submission to the DSM-5 public review: http://www.25megroup.org/News/DSM-V%20submission.doc  

Submitted by Suzy Chapman, UK

In response to: Overall Comments

Although the Diagnostic and Statistical Manual of Mental Disorders does not have quite the relevance for UK and some European patient populations as it does for the USA, diagnostic criteria in the forthcoming edition will shape the international research and literature landscapes for many years to come. DSM-5 will influence not only how disorders are defined for international research purposes but how patients and their needs are perceived by those responsible for their medical treatment and social care. It is hoped then, that the views of those from outside the USA submitting comment in response to the preliminary draft revisions will be afforded due consideration.

I would like to raise the following points in this “Overall Comment” section:

I welcome the decision of the Task Force to extend the submission of responses to preliminary draft revisions to the lay public as well as to APA members, clinicians, allied health professionals, researchers, administrators and other end users and for the Task Force’s recognition that patients, their carers, families and advocates and the patient organisations that represent their interests are crucial stakeholders in any consultation process. Their input merits particular consideration given the absence of patient representation within the individual Work Groups.

Professionals within the field will have been alerted to the public review process well in advance of 10th February; some specific patient groups will have already been interacting with relevant Work Groups with the opportunity of informing the revision process prior to the release of draft proposals. But whilst those patient communities with organised and vocal advocates will have used the internet and other channels of communication to alert their interest groups there may be many patient groups for which awareness of the DSM-5 development process and the opportunity to review proposals and submit responses may have taken a while to come to their attention.

Additionally, patient representation organisations would have benefited from more time in which to consult with external advisers and their own members, following the release of proposals, in order that the views of their members might be sought to inform their responses. This is particularly relevant since from 2007, when the Work Groups were formed, just two progress reports have been published by the various Work Groups, which in many cases have been notable for their brevity and lack of detail.

Some Work Groups, for example, the Work Group for Somatic Symptom Disorders, have published reports and editorials in subscription journals which have discussed and expanded on the proposals in the brief progress updates. But these journal reports, editorials and commentaries have not always been readily available to those outside the field and without journal paper access.

It would have been helpful, for example, if the publication of the free access Editorial: Dimsdale J, Creed F: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report on behalf of the Somatic Symptom Disorders Work Group in the June ‘09 edition of J Psychosom Res, 66 (2009) 473–476 could have been noted on the Somatic Symptom Disorders Work Group Progress Report page for wider dissemination.

I consider that the period for public review should have been at least a full three months in order enable better participation by patient interest groups.

It is understood from the current DSM-5 Timeline that the next opportunity for public review will be during May-July 2011, when revised draft diagnostic criteria will be posted online for approximately one month, following the internal review, to allow the public to provide feedback.

For the reasons above, I suggest that the Task Force gives consideration to extending this beta review period from one month to at least two months.

It is possible that I may have overlooked it, but I have noted no reference on the DSM-5 website to the submitting of comments through any other means than via the webpage text editor, for which registration is required. I have received a number of reports from patients of the difficulties they have experienced both with the registration process and with uploading comment. I would like to have seen the option for responses to be submitted via email and also via paper letter. This would also have been more inclusive of those who prefer not to use electronic means because of limited access to, or lack of confidence with, computers or whose access to computers is restricted due to ill health or disability.

Perhaps the issue of inclusivity can be addressed before the 2011 review period?

My experience of participation in previous consultation exercises has been limited to formal consultation processes where stakeholders have been required to register an interest, where responses to a draft or consultation document have been acknowledged and where, in some cases, there has been a commitment on the part of the document development group to respond publicly to responses received.

I acknowledge that the Task Force has had to balance opening up the draft proposals review process to a wide range of stakeholders against conducting a more restricted consultation process in which responses are acknowledged, recorded and responded to. It is, however, disconcerting for both professionals and the lay public to tender responses into which considerable effort may have been invested where there is no real understanding of how those responses are to be collated, considered and used to inform any revisions to the drafts prior to the commencement of field trials and with the knowledge that their comments and concerns will not be visible for scrutiny by other stakeholders.

Does the Task Force have any plans to publish summaries of the key areas of concern brought to their attention via the public review process for each of the Work Groups’ proposals and to publish Work Group/Task Force responses?

The APA continues to participate with the WHO in a DSM-ICD Harmonization Coordination Group and in the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders, chaired by DSM-5 Task Force member, Steven Hyman, MD.

To date, five meetings of the Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders have been held in Geneva. Summaries of the first four meetings held since 2007 have been published on the WHO main website. (A summary of the last meeting which took place over six months ago, in September 2009, has still to be published.)

It was raised, last year, with the Task Force, that since the DSM-5 Task Force participates in the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders and a DSM-ICD Harmonization Coordination Group that consideration should be given to publishing copies of the summaries of these meetings on the DSM-5 pages as well as on the WHO website. No response from the DSM-5 Task Force to this suggestion was forthcoming.

Would the Task Force please give further consideration to this suggestion?