Call to action – DSM-5 comments needed by June 15, 2012

Call to action – DSM-5 comments needed by June 15, 2012

Post #173 Shortlink: http://wp.me/pKrrB-2bO

The stakeholder comment period for the third and final review of draft proposals for DSM-5 categories and criteria closes on June 15. Patients, patient organizations and professional stakeholders have three weeks left in which to submit comments.

US advocate, Mary Dimmock, has prepared a “Call to action”

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is used in the U.S. to categorize mental disorders for patient diagnosis, treatment and insurance. The new version, DSM-5, includes a proposal for Somatic Symptom Disorder (SSD) that will have profound implications for ME/CFS patients. Your input is needed by June 15, 2012 to ensure that the DSM-5 authors understand your concerns…

…SSD can be applied to patients regardless of whether the symptoms are considered to be medically unexplainable or not. Severity is rated by the count and frequency of somatic symptoms. The “Justification for Criteria – Somatic Symptoms”, issued in May 2011, states that CBT, focused on “the identification and modification of dysfunctional and maladaptive beliefs”, is one of the most promising treatments.

Why this matters to ME/CFS patients
A diagnosis of SSD can be “bolted” onto any patient’s diagnosis. All that is required is for the medical practitioner to decide that the patient is excessively concerned with their somatic symptoms and their health. This is done using highly subjective and difficult to measure criteria for which very few independent reliability studies have been undertaken.

For patients with diseases that are poorly understood and misdiagnosed by the medical community, like ME/CFS, this will be disastrous. Once diagnosed inappropriately with SSD, the implications for diagnosis, treatment, disability and insurance will be profound…

Download Mary’s Call to action document here:

Word .docx format DSM-5 Response 2012

Word .doc format DSM-5 Response 2012 (MS 2004)

Somatic Symptom Disorder could capture millions more under mental health diagnosis

Somatic Symptom Disorder criteria could capture millions more under mental health diagnosis

Post #172 Shortlink: http://wp.me/pKrrB-29B

By Suzy Chapman | Dx Revision Watch

While media and professional attention has been focused on the implications for introducing new disorders into the DSM and lowering diagnostic thresholds for existing categories, the Somatic Symptom Disorders (SSD) Work Group has been quietly redefining DSM’s Somatoform Disorders with radical proposals that could bring millions more patients under a mental health diagnosis.

The SSD Work Group is proposing to rename the Somatoform Disorders section of DSM-IV to “Somatic Symptom Disorders,” eliminate four existing  DSM-IV categories: somatization disorder, hypochondriasis, pain disorder, and undifferentiated somatoform disorder and replace them with a single new category – “Somatic Symptom Disorder.”

If approved, these proposals will license the application of a mental health diagnosis for all illnesses – whether “established general medical conditions or disorders” like diabetes, heart disease and cancer or conditions presenting with “somatic symptoms of unclear etiology” – if the clinician considers that the patient’s life has become “subsumed” with health concerns and preoccupations, or their response to distressing somatic symptoms is “excessive” or “disproportionate” or their coping strategies “maladaptive.”

 

Somatoform Disorders – disliked and dysfunctional

The SSD Work Group, under Chair, Joel E. Dimsdale, says current terminology for the Somatoform Disorders is confusing and flawed; that no-one likes these disorders and they are rarely used in clinical psychiatric practice. Primary Care physicians don’t understand the terms and patients find them demeaning and offensive [1].

The group says the terms foster mind/body dualism; that the concept of “medically unexplained” is unreliable, especially in the presence of medical illness, and cites high prevalence of presentation with medically unexplained somatic symptoms (MUS) in general medical settings – 20% in Primary Care, 40% in Specialist Care, 33-61% in Neurology; that basing a diagnosis of psychiatric disorder on MUS alone is too sensitive.

The Work Group might have considered dispensing altogether with a clutch of disliked, dysfunctional categories.

Instead, the group proposes to rebrand these disorders and assign new criteria that will capture patients with diverse illnesses, expanding application of psychiatric services, antidepressants and behavioural therapies like CBT, for the “modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors.”

 

Focus shifts from “medically unexplained” to “excessive thoughts, behaviors and feelings”

The Work Group’s proposal is to deemphasize “medically unexplained” as the central defining feature of this disorder group.

Instead, focus shifts to the patient’s cognitions – “excessive thoughts, behaviors and feelings” about the seriousness of distressing and persistent somatic (bodily) symptoms which may or may not accompany diagnosed general medical conditions – and the extent to which “illness preoccupation” is perceived to “dominate” or “subsume” the patient’s life.

“…[The SSD Work Group's] framework 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…” [2]

“…These disorders typically present first in non-psychiatric settings and somatic symptom disorders can accompany diverse general medical as well as psychiatric diagnoses. Having somatic symptoms of unclear etiology 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 symptom disorder diagnosis. Conversely, having somatic symptoms of an established disorder (e.g. diabetes) does not exclude these diagnoses if the criteria are otherwise met…” [3]

These are the most recent proposals for new category ”J 00 Somatic Symptom Disorder.”

Note that requirement for “at least two from the B type criteria” has been reduced to “at least one from the B type criteria” for the third release of draft proposals, presumably in order to accommodate merging the previously proposed “Simple Somatic Symptom Disorder” category into the CSSD criteria. No revised “Rationale/Validity” PDF document has been issued, but read brief revised ”Rationale” here.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=368

Criteria A, B, and C must all be fulfilled to make the diagnosis:

A. Somatic symptoms: One or more somatic symptoms that are distressing and/or result in significant disruption in daily life.

B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least one of the following must be present.

(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

C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is persistent (typically >6 months).

Specifiers
Predominant Pain (previously pain disorder). This category is reserved for individuals presenting predominantly with pain complaints who also satisfy criteria B and C of this diagnosis. Some patients with pain may better fit other psychiatric diagnoses such as adjustment disorder or psychological factors affecting a medical condition.

Severity specifiers
Somatic Symptom Disorder is a disorder characterized by persistency, symptom burden, and excessive or maladaptive response to somatic symptoms. There is a considerable range of severity. Typically, the disorder is more severe when multiple somatic symptoms are present. In addition to fulfilling criteria A and C, the following metrics may be used to rate severity:

Mild: only 1 of the B criteria fulfilled
Moderate: 2 or more B criteria fulfilled
Severe: 2 or more B criteria fulfilled plus multiple somatic symptoms

 

How are highly subjective and difficult to measure constructs like “Disproportionate and persistent thoughts about the seriousness of one’s symptoms” and “Excessive time and energy devoted to these symptoms or health concerns” to be operationalized?

By what means would a practitioner determine how much of a patient’s time spent “searching the internet looking for data” (to quote the example of the Work Group Chair) might be considered a reasonable response to chronic health concerns and what should be coded as “excessive preoccupation” or indicate that this patient’s life has become “subsumed” or “overwhelmed” by concerns about illness and symptoms?  2 gigabytes a week?  5?  10?

At the APA’s Annual Conference, earlier this month, SSD Work Group Chair, Joel E. Dimsdale, presented an update on his group’s deliberations. During the Q & A session, a questioner expressed concern that practitioners who are not psychiatric professionals or clinicians might have some difficulty interpreting the wording of the B type criteria to differentiate between negative and positive coping strategies.

Dr Dimsdale was asked to expand on how the B type criteria would be defined and by what means patients with chronic medical conditions who devote time and energy to health care strategies to try to improve their symptoms and level of functioning would be evaluated in the field by the very wide range of DSM users and how they would be differentiated from patients considered to be spending “excessive time and energy devoted to symptoms or health concerns” or perceived as having become “absorbed” by their illness.

I am not persuaded by Dr Dimsdale’s reassurances that they will try to make this “crystal clear” in the five to six pages of manual text in the process of being drafted for this disorder chapter. Nor am I reassured that these B (1), (2) and (3) criteria can be safely applied outside the optimal conditions of field trials, in settings where practitioners may not necessarily have the time or instruction for administration of diagnostic assessment tools, and where decisions to code or not to code may hang on the arbitary and subjective perceptions of DSM end-users lacking clinical training in the use of the manual text and application of criteria.

 

Implications for a diagnosis of SSD for all patient populations

Incautious, inept application of criteria resulting in a “bolt-on” psychiatric diagnosis of a “Somatic Symptom Disorder” could have far-reaching implications for all patient populations:

• Application of highly subjective and difficult to measure criteria could potentially result in misdiagnosis with a mental health disorder, misapplication of an additional diagnosis of a mental health disorder or missed diagnoses through dismissal and failure to investigate new or worsening somatic symptoms.

• Application of an additional diagnosis of Somatic Symptom Disorder may have implications for the types of medical investigations, tests and treatments that clinicians are prepared to consider and which insurers are prepared to fund.

• Application of an additional diagnosis of Somatic Symptom Disorder may impact payment of employment, medical and disability insurance and the length of time for which insurers are prepared to pay out. It may negatively influence the perceptions of agencies involved with the assessment and provision of social care, disability adaptations and workplace accommodations.

• Patients prescribed psychotropic drugs for perceived unreasonable levels of “illness worry” or “excessive preoccupation” with symptoms may be placed at risk of iatrogenic disease.

• For multi-system diseases like Multiple Sclerosis, Behçet’s syndrome or Systemic lupus it can take several years before a diagnosis is arrived at. In the meantime, patients with chronic, multiple somatic symptoms who are still waiting for a diagnosis would be vulnerable.

• Proposals allow for the application of a diagnosis of Somatic Symptom Disorder where a parent is considered excessively concerned with a child’s symptoms [3]. Families caring for children with any chronic illness may be placed at increased risk of wrongful accusation of “over-involvement” with a child’s symptomatology.

Where a parent is perceived as encouraging maintenance of “sick role behaviour” in a child, this may provoke social services investigation or court intervention for removal of a sick child out of the home environment and into foster care or enforced in-patient “rehabilitation.” This is already happening in families with a child or young person with chronic illness, notably with Chronic fatigue syndrome or ME. It may happen more frequently with a diagnosis of a chronic childhood illness + SSD.

 

Dustbin diagnosis?

Although the Work Group is not proposing to classify Chronic fatigue syndrome, IBS and fibromyalgia, per se, within the Somatic Symptom Disorders, patients with CFS – “almost a poster child for medically unexplained symptoms as a diagnosis,” according to Dr Dimsdale’s presentation – or with fibromyalgia, irritable bowel syndrome, chronic Lyme disease, Gulf War illness, chemical injury and chemical sensitivity may be particularly vulnerable to misapplication or misdiagnosis with a mental health disorder under these SSD criteria.

There is considerable concern that this new Somatic Symptom Disorder category will provide a “dustbin diagnosis” in which to shovel the so-called “functional somatic syndromes.”

 

15% of “diagnosed illness” and 26% of “functional somatic” captured by SSD criteria

For testing reliability of CSSD criteria, three groups were studied for the field trials:

488 healthy patients; a “diagnosed illness” group of 205 patients with cancer and malignancy (some in this group were said to have severe coronary disease) and a “functional somatic” group comprising 94 people with irritable bowel and “chronic widespread pain” (a term used synonymously with fibromyalgia).

Patients in the study were required to meet one to three cognitions: Do you often worry about the possibility that you have a serious illness? Do you have the feeling that people are not taking your illness seriously enough? Is it hard for you to forget about yourself and think about all sorts of other things?

Dr Dimsdale reports that if the response was “Yes – a lot.” it was coded.

15% of the cancer and malignancy group met SSD criteria when “one of the B type criteria” was required; if the threshold was increased to “two B type criteria” about 10% met criteria for dual-diagnosis of cancer + Somatic Symptom Disorder.

For the 94 irritable bowel and “chronic widespread pain” study group, about 26% were coded when one cognition was required; 13% coded with two cognitions required.

Has the SSD Work Group produced projections for prevalence estimates and potential increase in mental health diagnoses across the entire disease landscape?

Has the group factored for the clinical and economic burden of providing CBT for modifying perceived “dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors” in patients for whom an additional diagnosis of Somatic Symptom Disorder has been coded?

 

Where’s the science?

Dr Dimsdale admits his committee has struggled from the outset with these B type criteria but feels its proposals are “a step in the right direction.”

The group reports that preliminary analysis of field trial results shows “good reliability between clinicians and good agreement between clinician rated and patient rated severity.” In the trials, CSSD achieved Kappa values of .60 (.41-.78 Confidence Interval).

Kappa reliability reflects agreement in rating by two different clinicians corrected for chance agreement – it does not mean that what they have agreed upon are valid constructs.

Radical change to the status quo needs grounding in scientifically validated constructs and a body of rigorous studies not on pet theories and papers (in some cases unpublished papers) generated by Dr Dimsdale’s work group colleagues. Where is the substantial body of independent research evidence to support the group’s proposals?*

*“...To receive a diagnosis of complex somatic symptom disorder, patients must complain of at least one somatic symptom that is distressing and/or disruptive of their daily lives. Also, patients must have at least two [Ed: now reduced to at least one since evaluation of the CSSD field trials] of the following emotional/cognitive/behavioral disturbances: high levels of health anxiety, disproportionate and persistent concerns about the medical seriousness of the symptom(s), and an excessive amount of time and energy devoted to the symptoms and health concerns. Finally, the symptoms and related concerns must have lasted for at least six months.”

“Future research will examine the epidemiology, clinical characteristics, or treatment of complex somatic symptom disorder as there is no published research on this diagnostic category.”

“…Just as for complex somatic symptom disorder, there is no published research on the epidemiology, clinical characteristics, or treatment of simple somatic symptom disorder.”

*Woolfolk RL, Allen LA. Cognitive Behavioral Therapy for Somatoform Disorders. Standard and Innovative Strategies in Cognitive Behavior Therapy.

 

Where are the professionals?

During the second public review, the Somatic Symptom Disorders proposals attracted more responses than almost any other category. The SSD Work Group is aware that patients, caregivers and patient advocacy organizations have considerable concerns. But are medical and allied health professionals scrutinizing these proposals?

This is the last opportunity to submit feedback. Psychiatric and non psychiatric clinicians, primary care practitioners and specialists, allied health professionals, psychologists, counselors, social workers, lawyers, patient advocacy organizations – please look very hard at these proposals, consider their safety and the implications for an additional diagnosis of an SSD for all patient illness groups and weigh in with your comments by June 15.

Criteria and rationales for proposals for the DSM-5 Somatic Symptom Disorders categories can be found here on the DSM-5 Development site.

 

References

1 Levenson JL. The Somatoform Disorders: 6 Characters in Search of an Author. Psychiatr Clin North Am. 2011 Sep;34(3):515-24.

Dimsdale JE. Medically Unexplained Symptoms: A Treacherous Foundation for Somatoform Disorders? Psychiatr Clin North Am. 2011 Sep;34(3):511-3.

2 Dimsdale J, Creed F. DSM-V Workgroup on Somatic Symptom Disorders: the proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report. J Psychosom Res 2009;66:473–6.

3 DSM-5 Somatic Symptom Disorders Work Group Disorder Descriptions and Justification of Criteria-Somatic Symptoms documents, published May 4, 2011 for the second DSM-5 stakeholder review. (Caveat: for background to the group’s rationales only; proposals and criteria as set out in these documents have not been revised to reflect recent changes to revisions or reissued for the third review.)

     Disorder Descriptions   May 4, 2011

     Rationale/Validity Document   May 4, 2011

DSM-5 proposals for Somatoform Disorders revised on April 27, 2012

DSM-5 proposals for Somatoform Disorders revised on April 27, 2012

Post #162 Shortlink: http://wp.me/pKrrB-24D

Update @ May 02, 2012: Since publication of this post, APA has posted its third draft (see Post #163)

Although the American Psychiatric Association (APA) has still to announce the dates for its third review of proposals for revisions to DSM-IV categories and criteria, I discovered, today, that proposals for the revision of the Somatoform Disorders were updated yesterday, April 27.

The APA’s third and final stakeholder review exercise is expected to launch by “end of May at the latest.” This is the only information we currently have and the Timeline remains unspecific – other than “Spring” and “for two months.”

Revisions to other DSM-IV categories may also have been published prior to the launch of the third public review and I would advise readers to check the DSM-5 Development site for potential changes to other categories.

 

Somatic Symptom Disorders

Earlier proposals for two new categories, “Complex Somatic Symptom Disorder” (CSSD) and “Simple Somatic Symptom Disorder” (SSSD); “Functional Neurological Disorder (Conversion Disorder)” and proposed revisions to selected other categories, as they had stood at the time of the second public review (May 4 – July 15, 2011), are archived on Dx Revision Watch site here, for comparison:

http://dxrevisionwatch.wordpress.com/dsm-5-proposals/dsm-5-proposals-sub-page-1/dsm-5-drafts-2/

and in this Dx Revision Watch post from May 10, 2011: http://wp.me/pKrrB-13z

 

From the DSM-5 Development website

Revisions as of April 27, 2012 (J 04 Factitious Disorder was updated on March 22, 2012)

http://www.dsm5.org/proposedrevision/Pages/SomaticSymptomDisorders.aspx

Somatic Symptom Disorders

Please find below a list of disorders that are currently proposed for the diagnostic category, Somatic Symptom Disorders. This category contains diagnoses that were listed in DSM-IV under the chapter of Somatoform Disorders. The Somatic Symptom Disorders Work Group has been responsible for addressing these disorders. Among the work group’s recommendations is the proposal to rename this category Somatic Symptom Disorders. Because the current terminology for somatoform disorders is confusing and because somatoform disorders, psychological factors affecting medical condition, and factitious disorders all involve presentation of physical symptoms and/or concern about medical illness, the work group suggests renaming this group of disorders Somatic Symptom Disorders. In addition, because of the implicit mind-body dualism and the unreliability of assessments of “medically unexplained symptoms,” these symptoms are no longer emphasized as core features of many of these disorders. Since Somatization Disorder, Hypochondriasis, Undifferentiated Somatoform Disorder, and Pain Disorder share certain common features, namely somatic symptoms and cognitive distortions, the work group is proposing that these disorders be grouped under a common rubric called Complex Somatic Symptom Disorder.*

[*Ed: The Work Group now proposes to merge the previously proposed category, "Simple Somatic Symptom Disorder" with "Complex Somatic Symptom Disorder" and is also considering dropping "Complex" from the name of the resulting disorder and instead, calling it "Somatic Symptom Disorder." Update @ May 02, 2012: The text above has been revised by the Somatic Symptom Disorder Work Group since publication of this post. See Post #163 for revised text.]

[Ed: Note: There have been two key PDF documents associated with the proposals for the "Somatic Symptom Disorders" – the "Disorders Description" and "Rationale/Validity" documents. These have been removed from the webpages, presumably pending updating to reflect changes to proposals for this section of DSM-5. If and when these two documents are republished, I will update this page. These updated proposal texts, below, are littered with typos.]

Instead of the categories as they had stood since May 2011:

Somatic Symptom Disorders

J 00 Complex Somatic Symptom Disorder
J 01 Simple Somatic Symptom Disorder
J 02 Illness Anxiety Disorder
J 03 Functional Neurological Disorder (Conversion Disorder)
J 04 Psychological Factors Affecting Medical Condition
J 05 Other Specified Somatic Symptom Disorder
J 06 Unspecified Somatic Symptom Disorder Pseudocyesis

the proposed categories now read (and note, are now renumbered):

Somatic Symptom Disorders

J 00 Somatic Symptom Disorder
J 01 Illness Anxiety Disorder
J 02 Conversion Disorder (Functional Neurological Symptom Disorder)
J 03 Psychological Factors Affecting Medical Condition
J 04 Factitious Disorder
J 05 Somatic Symptom Disorder Not Elsewhere Classified

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=368

[Ed: Proposal, Rationale and Severity texts have been revised since the May 2011 iteration.]

J 00 Somatic Symptom Disorder

Updated April-27-2012

Proposed Revision

Somatic Symptom Disorder

Criteria A, B, and C must all be fulfilled to make the diagnosis:

A. Somatic symptoms: One or more somatic symptoms that are distressing and/or result in significant disruption in daily life.

B. Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least one of the following must be present.

(1) Disproportionae 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

C. Chronicity: Although any one symptom may not be continuously present, the state of being symptomatic is persistent (typically >6 months).

Specifiers

Predominant Pain (previously pain disorder). This category is reserved for individuals presenting predominantly with pain complaints who also asatisfy criteria B and C of this diagnosis. Some patients with pain may better fit other psychiatric diagnoses such as adjustment disorder or psychological factors affecting a medical condition.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=368#

Rationale

The proposed classification for Somatic Symptom Disorders deemphasizes the central role of medically unexplained symptoms. Instead, it defines disorders on the basis of positive symptoms (distressing somatic symptoms + excessive thoughts, feelings, and behaviors in response to these symptoms).

The group considers that the current DSM-IV somatoform diagnoses (Somatization Disorder, Somatoform Disorder NOS, Undifferentiated Somatoform Disorder, Hypochondriasis and the Pain Disorders) are so flawed that complete restructuring of these diagnoses is required. Change is needed as:

- The DSM-IV somatoform diagnoses are used rarely in clinical practice in most countries; the terms cause confusion among doctors and are resented by many patients.

- The criteria for DSM-IV somatization disorder are too restrictive. Undifferentiated Somatoform Disorder has such a low threshold that it is applicable to a very large proportion of patients attending primary care. The same low threshold issue occurs with Somatoform Disorder NOS.

- These diagnoses are based on “medically unexplained symptoms,” but this term is unreliable, especially in the presence of medical illness. Doctors disagree on the use of the term and patient recall of such symptoms is variable, so reliability of these diagnoses is low.

- The lack of positive psychological features in the definition of these disorders means they fail to satisfy one of the criteria for a mental disorder.

The new diagnoses of Somatic Symptom Disorder (SSD) is proposed to overcome these problems with relevant DSM-IV diagnoses.

The previous posting proposed diagnoses of Complex Somatic Symptom Disorder (CSSD) and Simple Somatic Symptom Disorder (SSSD). In this revision, we have merged the two disordes, recognizing that SSSD is a less severe variant of CSSD. The work group is considering dropping the adjective “complex” from the name of the resulting disorder and is desirous of feedback.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=368#

Severity

Severity Specifiers (mild, moderate, severe)*

[Ed: Cf with ICD-11 Alpha drafting platform proposals for three (as yet undefined) degrees of Mild, Moderate and Severe "Bodily Distress Disorder." See Post #145: “Bodily Distress Disorders” to replace “Somatoform Disorders” for ICD-11? February 20, 2012]

Somatic Symptom Disorder is a disorder characterized by persistency, symptom burden, and excessive or maladaptive response to somatic symptoms. There is a considerable range of severity. Typically, the disorder is more severe when multiple somatic syptoms are present. In addition to fulfilling criteria A and C, the following metrics may be used to rate severity:

Mild: only 1 of the B criteria fulfilled
Moderate: 2 or more B criteria fulfilled
Severe: 2 or more B criteria fulfilled plus multiple somatic symptoms

PHQ Somatic Symptom Short Form (PHQ-SSS)*

*Ed: Kroenke K, Spitzer RL, Williams JBW. The PHQ-15: validity of a new measure for evaluating the severity of somatic symptoms. Psychosomatic Medicine 2002;64:258-266.
Abstract: http://www.ncbi.nlm.nih.gov/pubmed/11914441
PDF: http://www.psychosomaticmedicine.org/content/64/2/258.full.pdf+html

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=10

[Ed: Proposal, Rationale and Severity texts have been revised since the May 2011 iteration.]

J 01 Illness Anxiety Disorder

Updated April-27-2012

Proposed Revision

Illness Anxiety Disorder

A. Somatic symptoms are not present or, if present, are only mild in intensity.

B. Preoccupation with having or acquiring a serious illness. If another medical condition or high risk for developing a medical condition (e.g. strong family history) is present, the preoccupation is clearly excessive or disproportionate.

C. High level of anxiety about health and a low threshold for becoming alarmed about their health.

D. The individual performs excessive health-related behaviors (e.g., repeatedly checking one’s body for signs of illness), or exhibits maladaptive avoidance (e.g., avoiding doctors’ appointments and hospitals).

E. Although the specific preoccupation may not be continuously present, the state of being preoccupied is chronic (at least 6 months).

F. The illness-related preoccupation is not better accounted for by another psychiatric disorder, such as somatic symptom disorder, panic disorder, generalized anxiety disorder, or obsessive-compulsive disorder.

Subtypes

Care-seeking subtype: care-seeking individuals have elevated rates of medical utilization.

Care-avoidant subtype: avoidant individuals rarely seek medical care because seeing a physician and undergoing laboratory tests and diagnostic procedures heighten their anxiety to intolerable levels.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=10#

Rationale

Studies suggest that patients with hypochondriasis fall into two distinct subgroups. In one subgroup (75% of hypochondriasis patients), somatic symptoms predominate and form the patient’s primary concern. The other subgroup (25% of hypochondriacs) is composed of patients with minimal somatic symptoms but who are highly anxious about and suspicious of the presence of an undiagnosed, serious medical illness.

In our proposal for DSM 5, the former subgroup of patients would be subsumed under the new diagnosis of Somatic Symptom Disorder (SSD), while the latter subgroup would now be subsumed under the proposed Illness Anxiety Disorder (IAD). IAD is closely related to other somatic symptom disorders, anxiety disorders, and depressive disorders, but it is included here because of its close relationship to the other somatic symptom disorders in clinical presentation, phenomenology, and in cognitive, affective and behavioral characteristics.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=10#

Severity

Recommendations for severity criteria for this disorder are forthcoming. We encourage you to check our website regularly for updates.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=8

J 02 Conversion Disorder (Functional Neurological Symptom Disorder)

[Ed: Previous proposal was for renaming "Conversion Disorder" to "Functional Neurological Disorder (Conversion Disorder)" and to possibly relocate under "Dissociative Disorders" in line with ICD-10. Proposal, Rationale and Severity texts have been revised since the May 2011 iteration.]

Updated April-27-2012

Proposed Revision

Conversion Disorder (Functional Neurological Symptom Disorder)

A. One or more symptoms or deficits are present that affect voluntary motor or sensory function, with or without apparent impairment of consciousness.

B. Clinical findings provide evidence of internal inconsistency or incompatibility with recognized neurological or medical disease.

C. The symptom or deficit is not better explained by another recognized medical or DSM disorder.

D. The symptom or deficit is associated with clinically significant distress or imapairment in social, occupational, or other important areas of functioning or warrants medical evaluation.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=8#

Rationale

Name Change: The additional parenthetical “functional neurological symptom disorder” has been introduced as it is more frequently used by neurologists who see the majority of these patients. It is also a term that is more acceptable to patients.

Removal of previous criterion B. “Psychological factors are judged to be associated with the symptom or deficit because the initiation or exacerbation of the symptom or deficit is preceded by conflicts or other stressors” We propose that this criterion be eliminated and discussion of etiologic factors placed in accompanying text. This DSM IV criterion reduces the utility and reliability of the diagnosis in practice because:

(a) It confounds clinical description with a proposed but unproven etiology.

(b) The research evidence indicates that observed psychological factors are often non-specific; that is, they occur in patients with other conditions, often with a similar frequency; this non-specificity makes a judgment of their relevance in an individual case of ‘conversion’ subjective and potentially unreliable.

(c) In a substantial proportion of apparent cases of conversion – as defined by neurological symptoms not explained by disease – psychological factors cannot be convincingly or reliably demonstrated.

Removal of previous criterion C. “The symptom or deficit is not intentionally produced or feigned (as in Factitious Disorder or Malingering)”. This criterion reduces the utility and reliability of the diagnosis because:

(a) It is difficult, and probably clinically impossible, to prove reliably that a patient is not feigning.

(b) While the clinician needs to be aware of the possibility of feigning, and to make an appropriate diagnosis if it is found, there is no evidence that feigning is more common in patients with possible conversion disorder than with other mental disorders. Highlighting it for conversion alone is unnecessarily stigmatizing and may be detrimental to the physician-patient relationship.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=8#

Severity

- Minor and brief impairment (i.e., non-incapacitating symptom such as aphonia lasting less than 2 days)

- Minor impairment and persistent/recurrent (i.e., from 3 days to 3 months)

- Moderate impairment and brief duration

- Severe and persistent/recurrent (e.g., more than 3 months bedbound with contractures and/or muscle wasting)

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=387

J 03 Psychological Factors Affecting Medical Condition

Updated April-27-2012

Proposed Revision

Psychological Factors Affecting Medical Condition

To meet criteria for Psychological Factors Affecting Medical Condition, both criteria A and B are necessary.

A general medical condition is present.

B Psychological or behavioral factors adversely affect the general medical condition in one of the following ways:

1 the factors have influenced the course of the general medical condition as shown by a close temporal association between the psychological factors and the development or exacerbation of, or delayed recovery from, the general medical condition

2 the factors interfere with the treatment of the general medical condition (e.g., poor adherence)

3 the factors constitute additional well-established health risks for the individual

4 the factors influence the underlying pathophysiology to precipitate or exacerbate symptoms or to necessitate medical attention.

[Ed: Rationale and Severity texts have been revised since May 2011 iteration.]

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=387#

Rationale

The work group recommends retaining the diagnosis of Psychological Factors Affecting a Medical Condition (PFAMC) with only minor wording changes in the criteria.

In DSM-IV, PFAMC had 6 subtypes; since there is no evidence the subtypes have been used, we have recommended eliminating them. Finally, we have advocated moving PFAMC from its obscure place in the back of prior DSM editions into the Somatic Symptom Disorders chapter.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=387#

Severity

1 = increases medical risk (e.g. inconsistent adherence with anti-hypertension treatment)

2 = aggravates underlying medical condition (e.g. anxiety aggravating asthma)

3 = results in medical hospitalization or emergency room visit

4 = results in severe life-threatening risk (e.g. ignoring heart attack symptoms)

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=386

J 04 Factitious Disorder

[Ed: Proposal, Rationale and Severity texts have been revised since the May 2011 iteration.]

Updated March-22-2012

Proposed Revision

Proposed Subtypes:

Factitious Disorder Imposed on Self

To meet criteria for Factitious Disorder Imposed on Self, all four criteria must be met.

A. Falsification of physical or psychological signs or symptoms, or induction of injury or disease, associated with identified perception.

B. Presenting oneself to others as ill, impaired, or injured.

C. The deceptive behavior is evident even in the absence of obvious external rewards.

D. The abnormal illness behavior is not better accounted for by another mental disorder such as delusional disorder or other psychotic disorder.

Factitious Disorder Imposed on Another (previously, Factitious Disorder By Proxy)

To meet criteria for Factitious Disorder Imposed on Another, all four criteria must be met. Note that the perpetrator, not the victim, receives this diagnosis.

A. Falsification of physical or psychological signs or symptoms or of induction of injury or disease in another, associated with identified deception.

B. Presenting another (victim) to others as ill, impaired, or injured.

C. The deceptive behavior is evident even in the absence of obvious external rewards.

D. The abnormal illness behavior is not better accounted for by another mental disorder such as delusional disorder or other psychoitc disorder.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=386#

Rationale

The Somatic Symptom Disorders workgroup requests that Factitious Disorders be grouped within the Somatic Symptom chapter of DSM V. Such a grouping is more logical than the status quo where factitious disorders appear in their own chapter. Our proposed grouping supports clinical utility and facilitates future research.

Utility: This grouping would help physicians with the differential diagnosis of patients who present with persistent problems related to illness perception, frequently including unexpected and/or unexplained psychological and/or physical symptoms. In making a differential diagnosis, it is conceptually and pragmatically useful to group disorders that show diagnostic overlap with one another in the same section. This grouping will be particularly advantageous in terms of comparing and contrasting Factitious Disorder with Conversion Disorder and, to a lesser extent, with Complex Somatic Symptom Disorder.

Research: The grouping of Factitious Disorders with the other Somatic Symptom Disorders would facilitate research progress on the broad spectrum of symptom reporting phenomena, including the feigning of symptoms. In the status quo, Factitious Disorder is listed in a separate chapter, where it is not routinely considered.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=386#

Severity

There are few widely employed measures of severity in factitious disorder or conversion disorder.

For factitious disorder, one might grade severity levels as “1” when symptoms alone are reported (“bright red blood in stool”), as “2” when a lab test was modified (e.g. introducing blood into a urine sample), as “3” when patients make themselves sick or as “4” when patients’ actions lead to life threatening illness.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=541

J 05 Somatic Symptom Disorder Not Elsewhere Classified

Proposed Revision

Updated April-27-2012

Somatic Symptom Disorder Not Elsewhere Classified

Pseudocyesis A false belief of being pregnant that is associated with objective signs and reported symptoms of pregnancy.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=541#

Rationale

Pseudocyesis is a rare disorder with characteristic somatic features. Because of its prominent somatic presentation, pseudocyesis is included in the NEC section of Somatic Symptom Disorder.

http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=541#

Severity

The work group has not yet finalized their severity for this disorder. Please continue to check this Web site for updates, as this will be forthcoming.

I will continue to monitor the DSM-5 Development site for any further changes and for the announcement of the third and final stakeholder review.

The six most essential questions in psychiatric diagnosis: a pluralogue: conceptual and definitional issues in psychiatric diagnosis Parts 1 and 2

The six most essential questions in psychiatric diagnosis: a pluralogue: conceptual and definitional issues in psychiatric diagnosis, Parts 1 and 2

Post #161 Shortlink: http://wp.me/pKrrB-248

Below, I am posting the Abstract and Introduction to Parts 1 and 2 of Philos Ethics Humanit Med Review “The six most essential questions in psychiatric diagnosis: a pluralogue: conceptual and definitional issues in psychiatric diagnosis.”

Part 1 of this Review was published on January 13, 2012; Part 2 was published (as a provisional PDF) on April 18, 2012. I will post Part 3 when it becomes available.

Below Parts 1 and 2, I have posted the PDFs for Phillips J (ed): Symposium on DSM-5: Part 1. Bulletin of the Association for the Advancement of Philosophy and Psychiatry 2010, 17(1):1–26 and Phillips J (ed): Symposium on DSM-5: Part 2. Bulletin of the Association for the Advancement of Philosophy and Psychiatry 2010, 17(2):1–75 out of which grew the concept for the Philos Ethics Humanit Med Review Parts 1 and 2.

This is an interesting series of exchanges which expand on conceptual and definitional issues discussed in these two Bulletins but these are quite lengthy documents, 29 and 30 pp, respectively; PDFs are provided rather than full texts.

Review Part One

The six most essential questions in psychiatric diagnosis: a pluralogue part 1: conceptual and definitional issues in psychiatric diagnosis

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3305603/

Philos Ethics Humanit Med. 2012; 7: 3.
Published online 2012 January 13. doi: 10.1186/1747-5341-7-3 PMCID: PMC3305603

Copyright ©2012 Phillips et al; licensee BioMed Central Ltd.
Received August 15, 2011; Accepted January 13, 2012.

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

      The six most essential questions Part 1

or: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3305603/pdf/1747-5341-7-3.pdf

Html: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3305603/

or http://www.peh-med.com/content/7/1/3

James Phillips,¹ Allen Frances,² Michael A Cerullo,³ John Chardavoyne,¹ Hannah S Decker,⁴ Michael B First,⁵ Nassir Ghaemi,⁶ Gary Greenberg,⁷ Andrew C Hinderliter,⁸ Warren A Kinghorn,^2,9 Steven G LoBello,¹⁰ Elliott B Martin,¹ Aaron L Mishara,¹¹ Joel Paris,¹² Joseph M Pierre,^13,14 Ronald W Pies,^6,15 Harold A Pincus,^5,16,17,18 Douglas Porter,¹⁹ Claire Pouncey,²⁰ Michael A Schwartz,²¹ Thomas Szasz,¹⁵ Jerome C Wakefield,^22,23 G Scott Waterman,²⁴ Owen Whooley,²⁵ and Peter Zachar¹⁰

 

¹Department of Psychiatry, Yale School of Medicine, 300 George St., Suite 901, New Haven, CT 06511, USA

²Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, 508 Fulton St., Durham, NC 27710, USA

³Department of Psychiatry and Behavioral Neuroscience, University of Cincinnati College of Medicine, 260 Stetson Street, Suite 3200, Cincinnati, OH 45219, USA

⁴Department of History, University of Houston, 524 Agnes Arnold, Houston, 77204, USA

⁵Department of Psychiatry, Columbia University College of Physicians and Surgeons, Division of Clinical Phenomenology, New York State Psychiatric Institute, 1051 Riverside Drive, New York, NY 10032, USA

⁶Department of Psychiatry, Tufts Medical Center, 800 Washington Street, Boston, MA 02111, USA

⁷Human Relations Counseling Service, 400 Bayonet Street Suite #202, New London, CT 06320, USA

⁸Department of Linguistics, University of Illinois, Urbana-Champaign 4080 Foreign Languages Building, 707 S Mathews Ave, Urbana, IL 61801, USA

⁹Duke Divinity School, Box 90968, Durham, NC 27708, USA

¹⁰Department of Psychology, Auburn University Montgomery, 7061 Senators Drive, Montgomery, AL 36117, USA

¹¹Department of Clinical Psychology, The Chicago School of Professional Psychology, 325 North Wells Street, Chicago IL, 60654, USA

¹²Institute of Community and Family Psychiatry, SMBD-Jewish General Hospital, Department of Psychiatry, McGill University, 4333 cote Ste. Catherine, Montreal H3T1E4 Quebec, Canada

¹³Department of Psychiatry and Biobehavioral Sciences, David Geffen School of Medicine at UCLA, 760 Westwood Plaza, Los Angeles, CA 90095, USA

¹⁴VA West Los Angeles Healthcare Center, 11301 Wilshire Blvd, Los Angeles, CA 90073, USA

¹⁵Department of Psychiatry, SUNY Upstate Medical University, 750 East Adams St., #343CWB, Syracuse, NY 13210, USA

¹⁶Irving Institute for Clinical and Translational Research, Columbia University Medical Center, 630 West 168th Street, New York, NY 10032, USA

¹⁷New York Presbyterian Hospital, 1051 Riverside Drive, Unit 09, New York, NY 10032, USA

¹⁸Rand Corporation, 1776 Main St Santa Monica, California 90401, USA

¹⁹Central City Behavioral Health Center, 2221 Philip Street, New Orleans, LA 70113, USA

²⁰Center for Bioethics, University of Pennsylvania, 3401 Market Street, Suite 320 Philadelphia, PA 19104, USA

²¹Department of Psychiatry, Texas AMHSC College of Medicine, 4110 Guadalupe Street, Austin, Texas 78751, USA

²²Silver School of Social Work, New York University, 1 Washington Square North, New York, NY 10003, USA

²³Department of Psychiatry, NYU Langone Medical Center, 550 First Ave, New York, NY 10016, USA

²⁴Department of Psychiatry, University of Vermont College of Medicine, 89 Beaumont Avenue, Given Courtyard N104, Burlington, Vermont 05405, USA

²⁵Institute for Health, Health Care Policy, and Aging Research, Rutgers, the State University of New Jersey, 112 Paterson St., New Brunswick, NJ 08901, USA

Abstract

In face of the multiple controversies surrounding the DSM process in general and the development of DSM-5 in particular, we have organized a discussion around what we consider six essential questions in further work on the DSM. The six questions involve: 1) the nature of a mental disorder; 2) the definition of mental disorder; 3) the issue of whether, in the current state of psychiatric science, DSM-5 should assume a cautious, conservative posture or an assertive, transformative posture; 4) the role of pragmatic considerations in the construction of DSM-5; 5) the issue of utility of the DSM – whether DSM-III and IV have been designed more for clinicians or researchers, and how this conflict should be dealt with in the new manual; and 6) the possibility and advisability, given all the problems with DSM-III and IV, of designing a different diagnostic system. Part I of this article will take up the first two questions. With the first question, invited commentators express a range of opinion regarding the nature of psychiatric disorders, loosely divided into a realist position that the diagnostic categories represent real diseases that we can accurately name and know with our perceptual abilities, a middle, nominalist position that psychiatric disorders do exist in the real world but that our diagnostic categories are constructs that may or may not accurately represent the disorders out there, and finally a purely constructivist position that the diagnostic categories are simply constructs with no evidence of psychiatric disorders in the real world. The second question again offers a range of opinion as to how we should define a mental or psychiatric disorder, including the possibility that we should not try to formulate a definition. The general introduction, as well as the introductions and conclusions for the specific questions, are written by James Phillips, and the responses to commentaries are written by Allen Frances.

General Introduction

This article has its own history, which is worth recounting to provide the context of its composition.

As reviewed by Regier and colleagues [1], DSM-5 was in the planning stage since 1999, with a publication date initially planned for 2010 (now rescheduled to 2013). The early work was published as a volume of six white papers, A Research Agenda for DSM-V [2] in 2002. In 2006 David Kupfer was appointed Chairman, and Darrel Regier Vice-Chairman, of the DSM-5 Task Force. Other members of the Task Force were appointed in 2007, and members of the various Work Groups in 2008.

From the beginning of the planning process the architects of DSM-5 recognized a number of problems with DSM-III and DSM-IV that warranted attention in the new manual. These problems are now well known and have received much discussion, but I will quote the summary provided by Regier and colleagues:

Over the past 30 years, there has been a continuous testing of multiple hypotheses that are inherent in the Diagnostic and Statistical Manual of Mental Disorders, from the third edition (DSM-III) to the fourth (DSM-IV)… The expectation of Robins and Guze was that each clinical syndrome described in the Feighner criteria, RDC, and DSM-III would ultimately be validated by its separation from other disorders, common clinical course, genetic aggregation in families, and further differentiation by future laboratory tests–which would now include anatomical and functional imaging, molecular genetics, pathophysiological variations, and neuropsychological testing. To the original validators Kendler added differential response to treatment, which could include both pharmacological and psychotherapeutic interventions… However, as these criteria have been tested in multiple epidemiological, clinical, and genetic studies through slightly revised DSM-III-R and DSM-IV editions, the lack of clear separation of these syndromes became apparent from the high levels of comorbidity that were reported… In addition, treatment response became less specific as selective serotonin reuptake inhibitors were found to be effective for a wide range of anxiety, mood, and eating disorders and atypical antipsychotics received indications for schizophrenia, bipolar disorder, and treatment-resistant major depression. More recently, it was found that a majority of patients with entry diagnoses of major depression in the Sequenced Treatment Alternatives to Relieve Depression (STAR*D) study had significant anxiety symptoms, and this subgroup had a more severe clinical course and was less responsive to available treatments… Likewise, we have come to understand that we are unlikely to find single gene underpinnings for most mental disorders, which are more likely to have polygenetic vulnerabilities interacting with epigenetic factors (that switch genes on and off) and environmental exposures to produce disorders. [[2], pp. 645-646]

As the work of the DSM-5 Task Force and Work Groups moved forward, a controversy developed that involved Robert Spitzer and Allen Frances, Chairmen respectively of the DSM-III and DSM-IV Task Forces. The controversy began with Spitzer’s Letter to the Editor, “DSM-V: Open and Transparent,” on July 18, 2008 in Psychiatric Times [3], detailing his unsuccessful effort to obtain minutes of the DSM-5 Task Force meetings. In ensuing months Allen Frances joined him in an exchange with members of the Task Force. In a series of articles and blog postings in Psychiatric Times, Frances (at times with Spitzer) carried out a sustained critique of the DSM-5 work in which he focused both on issues of transparency and issues of process and content [4-16]. The latter involved the Task Force and Work Group efforts to address the problems of DSM-IV with changes that, in Frances’ opinion, were premature and not backed by current scientific evidence. These changes included new diagnoses such as mixed anxiety-depression, an expanded list of addictive disorders, the addition of subthreshold conditions such as Psychosis Risk Syndrome, and overly inclusive criteria sets – all destined, in Frances’ judgment, to expand the population of the mentally ill, with the inevitable consequence of increasing the number of false positive diagnoses and the attendant consequence of exposing individuals unnecessarily to potent psychotropic medications. The changes also included extensive dimensional measures to be used with minimal scientific foundation.

Frances pointed out that the NIMH was embarked on a major effort to upgrade the scientific foundation of psychiatric disorders (described below by Michael First), and that pending the results of that research effort in the coming years, we should for now mostly stick with the existing descriptive, categorical system, in full awareness of all its limitations. In brief, he has argued, we are not ready for the “paradigm shift” hoped for in the 2002 A Research Agenda.

We should note that as the DSM-5 Work Groups were being developed, the Task Force rejected a proposal in 2008 to add a Conceptual Issues Work Group [17] – well before Spitzer and Frances began their online critiques.

In the course of this debate over DSM-5 I proposed to Allen in early 2010 that we use the pages of the Bulletin of the Association for the Advancement of Philosophy and Psychiatry (of which I am Editor) to expand and bring more voices into the discussion. This led to two issues of the Bulletin in 2010 devoted to conceptual issues in DSM-5 [18,19]. (Vol 17, No 1 of the AAPP Bulletin will be referred to as Bulletin 1, and Vol 17, No 2 will be referred to as Bulletin 2. Both are available at http://alien.dowling.edu/~cperring/aapp/bulletin.htm. webcite) Interest in this topic is reflected in the fact that the second Bulletin issue, with commentaries on Frances’ extended response in the first issue, and his responses to the commentaries, reached over 70,000 words.

Also in 2010, as Frances continued his critique through blog postings in Psychiatric Times, John Sadler and I began a series of regular, DSM-5 conceptual issues blogs in the same journal [20-33].

With the success of the Bulletin symposium, we approached the editor of PEHM, James Giordano, about using the pages of PEHM to continue the DSM-5 discussion under a different format, and with the goal of reaching a broader audience. The new format would be a series of “essential questions” for DSM-5, commentaries by a series of individuals (some of them commentators from the Bulletin issues, others making a first appearance in this article), and responses to the commentaries by Frances. Such is the origin of this article. (The general introduction, individual introductions, and conclusion are written by this author (JP), the responses by Allen Frances.

For this exercise we have distilled the wide-ranging discussions from the Bulletin issues into six questions, listed below with the format in which they were presented to commentators. (As explained below, the umpire metaphor in Question 1 is taken from Frances’ discussion in Bulletin 1.)…

Full document in PDF format

 

Review Part Two

(Note: Part Two was published on April 18, 2012 and addresses Questions 3 and 4. The complete article is available as a provisional PDF. The fully formatted PDF and HTML versions are in production. I will replace with the final version when available.)

The six most essential questions in psychiatric diagnosis: A pluralogue part 2: Issues of conservatism and pragmatism in psychiatric diagnosis

Philosophy, Ethics, and Humanities in Medicine 2012, 7:8 doi:10.1186/1747-5341-7-8

http://www.peh-med.com/content/7/1/8/abstract

Published: 18 April 2012

      The six most essential questions Part 2 Provisional

The six most essential questions in psychiatric diagnosis: A pluralogue part 2: Issues of conservatism and pragmatism in psychiatric diagnosis

James Phillips, Allen Frances, Michael A Cerullo, John Chardavoyne, Hannah S Decker, Michael B First, Nassir Ghaemi, Gary Greenberg, Andrew C Hinderliter, Warren A Kinghorn, Steven G LoBello, Elliott B Martin, Aaron L Mishara, Joel Paris, Joseph M Pierre, Ronald W Pies, Harold A Pincus, Douglas Porter, Claire Pouncey, Michael A Schwartz, Thomas Szasz, Jerome C Wakefield, G Scott Waterman, Owen Whooley and Peter Zachar

Abstract (provisional)

In face of the multiple controversies surrounding the DSM process in general and the development of DSM-5 in particular, we have organized a discussion around what we consider six essential questions in further work on the DSM. The six questions involve: 1) the nature of a mental disorder; 2) the definition of mental disorder; 3) the issue of whether, in the current state of psychiatric science, DSM-5 should assume a cautious, conservative posture or an assertive, transformative posture; 4) the role of pragmatic considerations in the construction of DSM-5; 5) the issue of utility of the DSM – whether DSM-III and IV have been designed more for clinicians or researchers, and how this conflict should be dealt with in the new manual; and 6) the possibility and advisability, given all the problems with DSM-III and IV, of designing a different diagnostic system. Part I of this article took up the first two questions. Part II will take up the second two questions. Question 3 deals with the question as to whether DSM-V should assume a conservative or assertive posture in making changes from DSM-IV. That question in turn breaks down into discussion of diagnoses that depend on, and aim toward, empirical, scientific validation, and diagnoses that are more value-laden and less amenable to scientific validation. Question 4 takes up the role of pragmatic consideration in a psychiatric nosology, whether the purely empirical considerations need to be tempered by considerations of practical consequence. As in Part 1 of this article, the general introduction, as well as the introductions and conclusions for the specific questions, are written by James Phillips, and the responses to commentaries are written by Allen Frances.

The complete article is available as a provisional PDF. The fully formatted PDF and HTML versions are in production.

 

Symposium on DSM-5: Parts 1 and 2

      Bulletin Vol 17 No 1

Phillips J (ed): Symposium on DSM-5: Part 1. Bulletin of the Association for the
Advancement of Philosophy and Psychiatry 2010, 17(1):1–26

      Bulletin Vol 17 No 2

Phillips J (ed): Symposium on DSM-5: Part 2. Bulletin of the Association for the Advancement of Philosophy and Psychiatry 2010, 17(2):1–75

 

One focus for this site has been the monitoring of the various iterations towards the revision of the Somatoform Disorders categories of DSM-IV, for which radical reorganization of existing DSM categories and criteria is proposed.

As the DSM-5 Development site documentation currently stands (April 27, 2012), the “Somatic Symptom Disorders” Work Group (Chaired by Joel E. Dimsdale, M.D.) proposes to rename Somatoform Disorders to “Somatic Symptom Disorders” and to fold a number of existing somatoform disorders together under a new rubric, which the Work Group proposes to call “Complex Somatic Symptom Disorder.”

Complex Somatic Symptom Disorder (CSSD) would include the previous DSM-IV diagnoses of somatization disorder [DSM IV code 300.81], undifferentiated somatoform disorder [DSM IV code 300.81], hypochondriasis [DSM IV code 300.7], as well as some presentations of pain disorder [DSM IV code 307].

There is a more recently proposed, Simple Somatic Symptom Disorder (SSSD), which requires symptom duration of just one month, as opposed to the six months required to meet the CSSD criteria. There is also an Illness Anxiety Disorder (hypochondriasis without somatic symptoms); and a proposal to rename Conversion Disorder to Functional Neurological Disorder and possibly locate under Dissociative Disorders.

There is some commentary on the Somatoform Disorders in DSM-IV in this discussion from Bulletin 1:

Bulletin Vol 17 No 1, Page 19:

Doing No Harm: The Case Against Conservatism

G. Scott Waterman, M.D. David P. Curley, Ph.D.

Department of Psychiatry, University of Vermont College of Medicine

“Bodily Distress Disorders” to replace “Somatoform Disorders” for ICD-11?

“Bodily Distress Disorders” to replace “Somatoform Disorders” for ICD-11?

Post #145 Shortlink: http://wp.me/pKrrB-1Vx

The information in this report relates only to proposals for the forthcoming ICD-11; it does not relate to ICD-10 or the forthcoming US specific “clinical modification” of ICD-10, ICD-10-CM.

Part One

This report contains an important update on proposals for ICD-11 Chapter 5: Mental and behavioural disorders.

In a February 16 report by Tom Sullivan for Health Care Finance News, Christopher Chute, MD, who chairs the ICD Revision Steering Group, warns of a possible delay for completion of ICD-11 from 2015 to 2016. Nevertheless, the ICD-11 Beta drafting platform remains scheduled to launch in May, this year.

The Beta drafting platform will take the form of a publicly viewable browser similar to the Alpha drafting platform that has been in the public domain since last May.

You can view the Alpha Drafting Browser here:

Foundation Component view:

http://apps.who.int/classifications/icd11/browse/f/en

Morbidity Linearization view:

http://apps.who.int/classifications/icd11/browse/l-m/en

The Morbidity Linearization is the view that includes (what may be temporarily assigned) sorting codes. These codes are likely to change as chapter organization progresses. Click on the small grey arrows next to the chapters and categories to display parent > child > grandchildren hierarchies. Click on individual terms to display descriptive content in the right hand frame of the Alpha Browser.

Textual content for ICD-11 is in the process of being written and population of content for some chapters is more advanced than others. Content for some of these “ICD-11 Content Model parameters” may display: ID legacy code from ICD-10 (where applicable); Definition; Inclusions; Exclusions; Body Site; Causal Mechanism; Signs and Symptoms.

(For ICD-11, entities will be defined through up to 13 “Content Model parameters” across all chapters – considerably more descriptive content than in ICD-10 and a significant workload for the Topic Advisory Group members and managers who are generating the content for ICD-11.)

The Alpha Browser User Guide is here:

http://apps.who.int/classifications/icd11/browse/Help/en

This page of the User Guide sets out differences between Foundation view and Morbidity Linearization view.

The various ICD Revision Topic Advisory Groups (TAGs) are carrying out their work on a separate, more complex, multi-author drafting platform. Editing histories and “Category and Discussion Notes” are recorded so the progress of proposals and reorganization of ICD entities can be tracked, as the draft evolves.

When the Beta drafting platform launches, interested stakeholders will be invited to register for increased access and interaction with the drafting process by submitting comments and suggestions on draft content and proposals.

It is also possible to register for increased access to the Alpha drafting platform and for downloading PDFs of drafts for the “Print Versions for the ICD-11 Alpha Morbidity Linearization” for all 25 chapters of ICD-11. These are obtainable, once registered and logged in, from the Linearization > Print Versions tab.

Caveats

I’m going to reiterate the ICD-11 Alpha Browser Caveats because it’s important to understand that the ICD-11 Alpha draft is a work in progress – not a static document – and is subject to change.

The draft is updated on a (usually) daily basis; when you view the Alpha Browser, you are viewing a “snapshot” of how the publicly viewable draft stood at the end of the previous day; not all chapters are as advanced as others for reorganization or population of content; the draft is incomplete and may contain errors and omissions.

The codes and “sorting labels” assigned to ICD parent classes, child and grandchildren terms are subject to change as reorganization of the chapters progresses. The Alpha draft has not yet been approved by the Topic Advisory Groups, Revision Steering Group or WHO and proposals for, and content in the draft may not progress to the Beta drafting stage – so be mindful of the fact that the draft is in a state of flux.

We may have a clearer idea of what is being proposed once the Beta drafting platform is released, but as it currently stands, the Alpha lacks clarity; not all textual content will have been generated and uploaded for terms imported from ICD-10 and there may be no definitions or other textual content displaying for proposed new terms.

Two chapters that are a focus of this site are Chapter 5: Mental and behavioural disorders and Chapter 6: Disorders of the nervous system (the Neurology chapter). (ICD-11 is dropping the use of Roman numerals.)

I won’t be reporting on specific categories in Chapter 6 in this post but will do a follow up post for Chapter 6 in a few days; again, there is a lack of clarity for Chapter 6 and requests for specific clarifications, last year, from the chair of Topic Advisory Group Neurology and the lead WHO Secretariat for TAG Neurology have met with no response.

Continued on Page 2: Somatoform Disorders in ICD-10; Somatoform Disorders to Bodily Distress Disorders for ICD-11?

Pages: 1 2

Psychiatric creep – Erasing the interface between psychiatry and medicine

Psychiatric creep – Erasing the interface between psychiatry and medicine

Post #121 Shortlink: http://wp.me/pKrrB-1A5

As reported in an earlier post, the third draft of proposals for changes to DSM-IV categories and criteria is delayed because DSM-5 field trials are running behind schedule.

This third and final draft is now expected to be released for public review and comment, “no later than May 2012″, according to DSM-5 Task Force Vice-chair, Darrel Regier, MD [1].

 

DSM-5 Somatic Symptom Disorders

One focus of this site has been the proposals of the DSM-5 Somatic Symptom Disorders Work Group

Proposed criteria, as they stood in May, last year, are set out on the DSM-5 Development site here: http://tinyurl.com/Somatic-Symptom-Disorders

There are two key PDF documents which expand on the proposals as currently posted:

         Disorders Description  Key Document One: “Somatic Symptom Disorders”

         Rationale Document  Key Document Two: “Justification of Criteria — Somatic Symptoms”

 

Erasing the interface between psychiatry and medicine 

 

I first reported on Co-Cure, over two years ago, in May 2009, that the conceptual framework the Somatic Symptom Disorders Work Group was proposing would:

“…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.” [2]

(“Somatic” means “bodily” or “of the body”.)

The most recent version of the Somatic Symptom Disorders Disorders description proposals document states:

“This group of disorders is characterized predominantly by somatic symptoms or concerns that are associated with significant distress and/or dysfunction…Such symptoms may be initiated, exacerbated or maintained by combinations of biological, psychological and social factors.”

“These disorders typically present first in non-psychiatric settings and somatic symptom disorders can accompany diverse general medical as well as psychiatric diagnoses. Having somatic symptoms of unclear etiology 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 symptom disorder diagnosis. Conversely, having somatic symptoms of an established disorder (e.g. diabetes) does not exclude these diagnoses if the criteria are otherwise met.”

“The symptoms may or may not be associated with a known medical condition. Symptoms may be specific (such as localized pain) or relatively non-specific (e.g. fatigue). The symptoms sometimes represent normal bodily sensations (e.g., orthostatic dizziness), or discomfort that does not generally signify serious disease.” [3]

 

Psychiatric creep

While the media has focused on the implications for introducing new disorder categories into the DSM and lowering diagnostic thresholds for existing criteria, there has been little scrutiny of the proposals of the Somatic Symptom Disorders Work Group.

This Work Group has been quietly redefining DSM’s Somatoform Disorders categories with proposals that will have the potential for a “bolt-on” diagnosis of a “somatic symptom disorder” for all medical diseases, whether “established general medical conditions or disorders”, like diabetes or angina, or conditions presenting with “somatic symptoms of unclear etiology.”

These radical proposals for rebranding the Somatoform Disorders categories as Somatic Symptom Disorders and combining a number of existing, little-used categories (somatization disorder, hypochondriasis, pain disorder, and undifferentiated somatoform disorder) under a proposed portmanteau term, Complex Somatic Symptom Disorder (CSSD), and the more recently proposed, Simple Somatic Symptom Disorder (SSSD), which requires symptom duration of as little as one month, have the potential for bringing many thousands more patients under a mental health banner.

Complex Somatic Symptom Disorder (CSSD) criteria are here: http://tinyurl.com/DSM-5-CSSD 

Simple Somatic Symptom Disorder (SSSD) criteria are here: http://tinyurl.com/DSM-5-SSSD

These proposals have the potential for expanding markets for psychiatric services, antidepressants and behavioural therapies, like CBT, for the “modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors”  for all patients with somatic symptoms, if the clinician decides that the patient’s response (or in the case of a child, a parent’s response) to bodily symptoms and concerns about their health are “excessive”, or the perception of their level of disability “disproportionate”, or their coping styles “maladaptive.”

Under the guise of “eliminating stigma” and eradicating “terminology [that] enforces a dualism between psychiatric and medical conditions” by “de-emphasizing the concept of ‘medically unexplained’”, the American Psychiatric Association appears hell bent on colonising the entire medical field by licensing the potential application of a mental health diagnosis to all medical diseases and disorders.

Continued on Page 2

Pages: 1 2

Important notice from DSM-5 Development website (further extension to comment period)

Important notice from DSM-5 Development website (further extension to comment period)

Post #98 Shortlink: http://wp.me/pKrrB-1eW

DSM-5 Development

http://www.dsm5.org/Pages/Default.aspx

Friday, July 15th: We are experiencing some site difficulties and our system is unable to accept comments today. As this is the final day of our open comment period, we encourage you to submit your comments to dsm5@psych.org. We will make sure your comments, if posted by midnight, July 18th, are directed to the appropriate DSM work group(s) for their review. We apologize for the inconvenience and appreciate your contributions to this important diagnostic revision.

Three days left before the second DSM-5 stakeholder review period closes

Three days left before the second DSM-5 stakeholder review period closes

Post #97 Shortlink: http://wp.me/pKrrB-1eA

On June 16, the American Psychiatric Association (APA) announced an extension to its second public stakeholder review of draft proposals for categories and criteria for the next edition of the Diagnostic and Statistical Manual of Mental Disorders, which will be known as “DSM-5″.

The closing date for submissions is now Friday, July 15.

There are just three more days left in which to submit letters of concern in response to potentially damaging proposals being put forward by the Work Group for “Somatic Symptom Disorders” – the DSM-5 committee charged with the revision of existing DSM-IV “Somatoform Disorders” categories. 

Today, patient advocate, Caroline Davis, has sent me a copy of her letter for inclusion on this site. Ms Davis tells me she has made her submission available for other patients to use.

If you haven’t already submitted a comment, please do, however brief. You’ll find  information on making submissions in this post: http://tinyurl.com/DSM-5-register-to-comment.

Proposed criteria and two key documents are posted here: http://wp.me/pKrrB-13z.

For examples of other letters of concern, you’ll find copies of this year’s submissions, including the Coalition4ME/CFS’s resource materials and template letter, collated here: http://wp.me/PKrrB-19a. These include letters of concern from international patient organizations, professional stakeholders, patients, patient advocates and professional bodies.

If you have already submitted but have other points to make, please submit a second response. 

If you know an informed professional please alert them today to the implications for patients with ME, CFS, IBS, FM, CI, CS, Gulf War illness and other illnesses that are bundled under the ”Functional Somatic Syndromes” and “Medically Unexplained” umbrellas.

If the Work Group’s current proposals are approved, these illnesses will be sitting ducks for an additional mental health diagnosis of a “Somatic Symptom Disorder”.

If you haven’t yet registered your concerns, please get a letter in before the feedback period closes on July 15!

Submission by patient advocate, Caroline Davis

J 00 Complex Somatic Symptom Disorder

I would like to express my deep concern about the proposed new category of Complex Somatic Symptom Disorder (CSSD) in DSM-5 scheduled for release in 2013.

CSSD proposes to add a mental health diagnosis to any condition where the sufferer has been ill for more than six months, and has developed ‘excessive’ concern about his or her health.

Since most good employers have a sick leave scheme which pays full or most-of-full pay for six months, this timeframe coincides most unhealthily with:

a) The individual’s realisation that their illness might not resolve, and/or might possibly be a disability and

b) A concerted effort to research their condition and seek more tests and treatments in order to get well and

c) The looming possibility of job loss, financial penury and the imminent need to make insurance or disability claims.

A patient in such a situation is likely to fall slap-bang within the CSSD criteria of:

(2) Disproportionate and persistent concerns about the medical seriousness of one’s symptoms and

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

The effect is to automatically deliver a diagnosis for an Axis I psychiatric disorder, simply for finding out what is causing one’s symptoms after such a long time of being ill, and wanting to do the best one can in order to get well and save one’s job and prospects for the future.

There is no empirical data to support the existence of ‘CSSD’. I believe that it is neither clinically safe nor morally right to force through un-researched, untried, untested (and possibly entirely inaccurate) diagnostic criteria for an entirely un-researched, untested (and possibly false) psychiatric condition. As your paper itself says, CSSD is merely ‘a construct’. There is no empirical evidence to support this ‘construct’ but plenty of circumstantial and factual evidence for why this ‘construct’ has been proposed and is being pushed forward with such unseemly speed.

Most patients are sick, but not stupid. We were managers, scientists, teachers, medical people, civil servants and business people in our former lives, and we still have functioning brains. We can see that names on the DSM committee considering CSSD include those in the pay of insurance companies and Governments (including the UK medical establishment). We also know that the implications of DSM-5 will extend to the next version of WHO.

There are those on your committee who wish only to do the bidding of their financial paymasters, and they are doing this by creating diagnoses such as ‘CSSD’ which will allow insurance companies and Government agencies to deny the claims of the genuinely sick and disabled. I urge the rest of the committee members not to allow them to do this, and to remain faithful to the objectives of WHO classifications as an excellent source of unbiased medical knowledge for the guidance of medical practitioners across the world.

Please do not let the DSM – and by implication the WHO classifications – become the vehicle of Governments and insurance companies to get their financial needs met.

I urge the committee to see past the claim that: a ‘diagnosis of CSSD could be applied to any patient with any diagnosis’. In clinical practice, as well as in your own discussions, it is already clear that this ‘diagnosis’ would be applied far more readily to patients already vilified for having conditions for which there is no objective medical test, eg: IBS, ME/CFS, FM, Gulf War Syndrome, interstitial cystitis, long-term pain and others. I urge the committee to examine the level of medical research funding dedicated to these conditions: they will find that funding for biomedical research has been restricted to bare, minimal levels for the past thirty years, which goes a long way toward explaining why there are no differential medical tests for these conditions yet. The solution is more and better biomedical research, not to create a new ‘bucket’ classification to financially manage-away these conditions.

I urge the committee to consider the consequences of moving too fast to approve a classification which is likely to be immediately pejorative to patients. The inclusion of ‘CSSD’ as a possibility for diagnosis will tap into the already hysterical media and ‘biopsychosocial’ research claims and pronouncements about these misunderstood and underestimated conditions.

The consequences – unintended by those whose moral conscience on DSM-5 is clear, and jauntily dismissed by those for whom recognition of these conditions would be financially and politically injurious – are likely to be catastrophic. They include: sceptical medical practitioners who will increasingly believe that it is OK not to test and treat, nor to provide appropriate care, nor to support disability benefit claims; and insurance companies who continue to charge huge premiums and would (with CSSD in place) be free to dismiss valid claims for some of the sickest people they serve.

Not only is this not an appropriate route to management or cure for such patients, but the consequences will quickly spiral into poverty, physical distress and in some cases preventable death.

Even if a patient should subsequently recover, the stigma of a mental health diagnosis is likely to legislate against the possibility of future employment and full reconstruction of a career at pre-illness levels. Thus it would have a direct economic effect on both the individual and the economy.

How much is CSSD really about the management of sickness and disability in patients by doctors and health service professionals, and how much is it the product of financial machinations by insurance companies and Governments seeking to minimise liability for medical care and disability?

While there is such a dearth of properly-conducted research (by non-partisan medical scientists) into the medical validity, applicability and usefulness of CSSD as a diagnosis; and while the likelihood of rushing into including it is likely to have such potentially dire consequences for patients (and, through effects on reputation and liability, also for medical practitioners) I request and appeal for CSSD to be omitted from the DSM-5.

Yours sincerely

Caroline Davis

Patient, advocate

  

Second DSM-5 public review of draft criteria

The closing date for comments in the second DSM-5 public review has been extended to July 15.

Register to submit feedback via the DSM-5 Development website here: http://tinyurl.com/Somatic-Symptom-Disorders

Once registered, log in with username and password and go to page: http://tinyurl.com/DSM-5-CSSD

Copies of this year’s submissions are being collated here: http://wp.me/PKrrB-19a

Minutes: Chronic Fatigue Syndrome Advisory Committee (CFSAC) Spring meeting: May 10 – 11

Minutes: Chronic Fatigue Syndrome Advisory Committee (CFSAC) Spring meeting: May 10 – 11

Post #95 Shortlink: http://wp.me/pKrrB-1dP

“The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

• factors affecting access and care for persons with CFS;
• the science and definition of CFS; and
• broader public health, clinical, research and educational issues related to CFS.

“Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.”

 

The twentieth meeting of CFSAC Committee was held in Washington, DC, over two days in May.

Minutes for the proceedings on Day One (May 10) are now published on the CFSAC website. I will update this post when Minutes for Day Two (May 11) and the Recommendations resulting out of this meeting are also published.

Chronic Fatigue Syndrome Advisory Committee (CFSAC)

Meeting May 10-11, 2011

Documents

CFSAC website  

Agenda CFSAC Meeting May 10 – 11  

Presentations and Public Testimonies

Videocasts Day One and Two

Meeting background documents

Recommendations [not yet published]

Minutes Day One (May 10)

Minutes Day Two (May 10) [not yet published]

Open in PDF format: CFSAC Minutes 10 May 2011

43 Pages in PDF format

The Twentieth Meeting of THE CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE US DEPARTMENT OF HEALTH AND HUMAN SERVICES

Hubert H. Humphrey Building, Room 712E, 200 Independence Avenue, SW

Washington, DC 20101

Tuesday, May 10, 2011 – 9:00 am to 5:00 pm

Discussion of concerns around the long-standing proposals for the coding of Chronic Fatigue Syndrome in the forthcoming US specific “Clinical Modification” of ICD-10, known as “ICD-10-CM”, had been tabled on the agenda at 1.15pm on Day One of  the meeting. 

ICD-10-CM has been under development for many years. A public comment period ran from December 1997 through February 1998.

In 2001, the CDC were recommending that Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic Fatigue Syndrome should all be classified within Chapter 6 Diseases of the nervous system at G93.3, in line with the international ICD-10, from which ICD-10-CM was being adapted for US use.

By 2007, the proposal was (and still stands) that Postviral fatigue syndrome and Benign myalgic encephalomyelitis would be classified in Chapter 6 at G93.3, but that Chronic Fatigue Syndrome would be retained in the R codes (which will be Chapter 18 in ICD-10-CM) and coded under R53 Malaise and fatigue > R53.82 Chronic fatigue, unspecified” > chronic fatigue syndrome NOS, Excludes1: postviral fatigue syndrome (G93.3).

The history of the coding of PVFS, (B)ME and Chronic fatigue syndrome in ICD to 2001 is set out in this CDC document: http://www.co-cure.org/ICD_code.pdf

At the May 10 CFSAC meeting, around 50 minutes was given over to discussion of this agenda item which resulted in a motion proposing a new Recommendation to HHS that was unanimously voted in favour of by the committee.

 

As I have a particular interest in this issue, I have interspersed this section of the Minutes with notes addressing a number of errors and misunderstandings. My comments are inserted in blue, bold.

As these notes are inserted into official Minutes I give no permission to re-publish as both the formatting and the integrity of an official document will be lost – so permission to link to this post only.

Discussion of International Classification of Diseases-Clinical Modification (ICD-CM)

Page 27:

LUNCH

The Chronic Fatigue Syndrome Advisory Committee recessed for lunch for one hour.

Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns

DISCUSSION OF INTERNATIONAL CLASSIFICATION OF DISEASES – CLINICAL MODIFICATION (ICD-CM) CONCERNS

Dr. Christopher Snell

Brought the meeting to order. Noted they would have a discussion of the ICD-related questions and the proposed reclassification of chronic fatigue syndrome.

Chronic fatigue syndrome is not being “reclassified” as such for ICD-10-CM, but being proposed to be retained in the R codes, as a legacy of ICD-9-CM, rather than follow international ICD-10.

Advised there was a page in the members’ notebooks tabbed after the State of the Knowledge summary which noted key steps in the development of the ICD 10 CM, so a clinical modification of the World Health Organization’s (WHO) ICD 10. It would replace ICD 9.

Stated his understanding of the issues:

o Disconnect between the way the U.S. uses the classification and the rest of the world.

o The way CFS is classified under the ICD system has implications for both reporting of incidents, morbidity and mortality.

o Used by outside agencies to categorize the illness for purposes of inclusion or exclusion.

Opened the floor for discussion.

Dr. Wanda Jones

Clarified that the committee requested that the National Center for Health Statistics have someone to talk to them about the international classification of diseases, about the process, about how the U.S. adapts the WHO index, the ICD for use and about opportunities for dialogue.

Noted that a meeting was set a year ago for May 10 and 11 in Baltimore that engaged resources for the CMS, parts of the federal government focused on health IT and the entire ICD team from the National Center for Health Statistics (NCHS). Noted that as a result no one was available for the CFSAC meeting.

In lieu of their attendance, she developed some questions that the NCHS, ICD team responded to.

PDF of Dr Jones’ background document here: ICD-related questions from CFSAC for May 2011 meeting
http://www.hhs.gov/advcomcfs/meetings/presentations/icd_ques201105mtng.pdf

Tried to clarify the questions so they would have a good understanding of the key processes and the key inflection points differentiating the WHO process from the U.S. ICD-CM, the clinical modification process.

Raised additional questions regarding how alignment from prior versions is maintained and how ICD coding is used in decision-making. Noted also the relationship between the coding and the diagnostic and statistical manual (DSM).

Stated that the information was provided by the NCHS and is meant to generate discussion.

Stated that the ICD-CM process is a public process with regularly scheduled public meetings. Noted that there is an opportunity to comment as part of that process and to engage. Confirmed that the NCHS stated that there has been no public presence from the CFS community at the meetings. Noted that this was the process for people interested in CFS coding to become involved.

Confirmed that there was a lock procedure that is soon to be executed for the ICD 10 CM. Noted it had been in development for a decade and the United States’ move to electronic records means it has to temporarily lock the codes. The electronic health records software would not be ready if they keep changing them.

Noted that information about coding changes would continue to be collected, taken under advisement and the NCHS would continue the process of evaluating. Stated that once it is in public use then that lock will release and there would be an opportunity on a periodic basis for updating.

Dr. Leonard Jason

Stated that the committees are developing ICD 10 CM and it intends to retain CFS in R codes (R53.82) and this means that the symptoms, signs, abnormal results of clinical or other investigative procedures are ill-defined conditions.

Stated that R-codes means it’s an ill-defined condition regarding which no diagnosis is classifiable elsewhere. Explained that if it cannot be diagnosed elsewhere in ICD 10 it goes into a R-code.

The intention in ICD 11 is to put CFS with two other conditions (post viral fatigue syndrome and benign myalgic encephalomyalitus [sic]) under a G-code, being G93.3 or diseases of the nervous system.

For ICD-11, the proposal is to classify all three terms within Chapter 6 Diseases of the nervous system but these categories may not retain the familiar “G93.3″ code.

For ICD-11, the parent class “G93 Other disorders of brain” is proposed to be removed (this will affect many categories classified under or indexed to a code that is currently a child to the G93 parent class in ICD-10).

For ICD-11, categories within Chapter 6 Diseases of the nervous system are being reorganised and different codes have been assigned to Chapter 6 categories to those used in ICD-10. “Chronic fatigue syndrome” is proposed to be an ICD Title code and is currently assigned the code “06L00″ in the ICD-11 Alpha Draft, under new parent class “06L Other disorders of the nervous system”.

For ICD-11, “Benign myalgic encephalomyelitis” is specified as an Inclusion term to “06L00 Chronic fatigue syndrome”. A change of hierarchy is recorded in the iCAT Alpha drafting platform for “Postviral fatigue syndrome” and “Chronic fatigue syndrome”.

See Dx Revision Watch report: ICD-11 Alpha Drafting platform launched 17 May (public version) for screenshots from the latest version of the ICD-11 Alpha Draft: http://wp.me/pKrrB-16N

Noted that coding CFS under the R-code in the proposed ICD 10 CM would place it out of line with the International ICD 10 used in over 100 countries. Discussed the problems and implications of the U.S. coding of CFS as compared with how other countries are coding it. It would exclude it from the R53 malaise and fatigue codes, which would imply that CFS does not have a viral etiology.

That last sentence does not make sense. Retaining CFS under the R codes would exclude it from the Chapter 6, G93.3 classification.

Proposals for ICD-10-CM have “chronic fatigue syndrome NOS (R53.82)” specified as an Exclusion to “G93.3 Postviral fatigue syndrome > Benign myalgic encephalomyelitis”.

Proposals for ICD-10-CM have “Postviral fatigue syndrome (G93.3)” specified as an Exclusion to the “R53 Malaise and fatigue > R53.82 Chronic fatigue, unspecified” > Chronic fatigue syndrome NOS codes.

Brought forward a motion to be considered:

CFSAC rejects current proposals to code CFS in Chapter 18 of ICD 10 CM under R53.82 chronic fatigue syndrome unspecified, chronic fatigue syndrome NOS (not otherwise specified). CFSAC continues to recommend that CFS should be classified in the ICD 10 CM in Chapter 6 under diseases of the nervous system at G93.3 in line with international ICD 10 in ICD 10 CA which is the Canadian clinical modification and in accordance with the committee’s recommendation which we made in August of 2005. CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in U.S. disease classification systems.

Previous CFSAC recommendations for ICD-10-CM had read:

May 2010 CFSAC recommendation: CFSAC rejects proposals to classify CFS as a psychiatric condition in U.S. disease classification systems. CFS is a multi-system disease and should be retained in its current classification structure, which is within the “Signs and Symptoms” chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM).

August 2005 CFSAC recommendation: Recommendation 10: We would encourage the classification of CFS as a “Nervous System Disease,” as worded in the ICD-10 G93.3.

Noted that ME and CFS patients could be potentially vulnerable to the current DSM 5 proposals because those proposals are highly subjective and difficult to quantify. Noted that retaining the CFS in the R-codes in the IDC 10 CM differentiates the U.S. from other countries but it renders CFS and ME patients more vulnerable to some of the DSM 5 proposals, notably chronic complex symptom disorder [sic].

Should be ”Complex Somatic Symptom Disorder”, not as above.

Dr. Klimas asked for clarification, and Dr. Jason said that in 2013 they would move from DSM 4 to DSM 5. As it stands they would be collapsing somatization disorder, undifferentiated somatoform disorder, hypochondriasis and some presentations of panic disorder into complex somatic symptom disorder. Dr. Klimas clarified that his concern was that the CFS ICD 9 codes would put the non post viral patients into this somatoform cluster. Dr. Jason indicated that this was so.

Should be “pain disorder” not “panic disorder”.

Dr. Klimas seconded the motion.

Mr. Krafchick agreed and stated that the ramifications of the classification would be disastrous for patients, because it would limit disability payments to two years. Dr. Jones clarified that for now the clock was ticking, however once the codes were released, they could be revised, it’s just the implementation of the electronic system which is causing it to be locked at a particular point in time. While CFSAC has shared concerns with NCHS, there is an official process for engaging with them on their discussions regarding the codes. The US was interested in morbidity, in case claims. It is important that providers know how to best categorize things, and provide guidance on which codes to consider based on the science for the disease being evaluated.

Mr. Krafchick stated that the issue was that the criteria for the codes was etiology/trigger based. Dr. Jones clarified that it would still remain in the clinician’s judgment, however if they could not identify where the trajectory developed toward CFS, then it would wind up in the R codes. Dr. Jones clarified also that the NCHS does not view the R category as a somatoform disorder. Mr. Krafchick and Dr. Snell indicated they understood this but it would still represent vulnerability for patients when classifying.

(The justification given by CDC for not mirroring ICD-10 is this: If the clinician feels there is enough evidence to attribute the patient’s illness to a viral illness, they can code at G93.3; if not, they can code at R53.82 Chronic fatigue syndrome NOS. Testing for a viral illness is not required to assign a code, the coding would be based on the clinician’s judgment.)

Dr. Jason restated his recommendation.

Dr. Marshall stated his concern that there was an attendant risk with this, but that they were between a rock and a hard place. He agreed CFS/ME being classified as a somatoform disorder was inappropriate, but at the same time that the recommendation says it’s a complex multi-system disease, it categorizes it within a single nervous system disease silo. This might affect future research funding opportunities with people saying they don’t fund neurological research. He expressed the view that they should advocate for classification in a multi-system disease category rather than putting it in a nervous system disease category for future, though this category did not exist now. It would be a good thing for patients short term, but it could be a long term risk.

Dr. Snell said that given the amount of current funding, this wasn’t a risk. Dr. Marshall said that using reverse translational research as had been advocated during the meeting might increase the role of this categorization, and could be restrictive in funding.

Dr. Jones asked whether the recommendation being put forward was the same as the May 2010 recommendation, and Dr. Jason said that his was dramatically different. Mr. Krafchick underscored how the insurance companies use these ICD codes. If it was classified in something that could be psychiatric it will be psychiatric, so they can deny coverage.

Dr. Levine asked about co-morbid disorders and how these are weighted. Dr. Jones responded that she did not think that there was a weighting. It would get listed like a death certificate, a cause of death and then a secondary, sometimes a third. She stated it was the judgment of the clinician how it was listed.

Dr. Klimas expressed the view that coding was also problematic because clinicians code to get paid. There already exists a bias against coding CFS as CFS because the codes could not be used for billing. She stated that they would make a conscious decision not to code CFS as CFS. She indicated that neurology was a fine place for it to be categorized, and at least this would assist people who may be looking for patient data, as it wouldn’t be ignored.

Dr. Snell asked for a vote of all those in favor regarding Dr. Jason’s motion. The motion passed unanimously.

Dr. Jones noted that she would share this recommendation with the NCHS but repeated that unless someone moved forward to intervene in the official processes in the public record it may not move forward or have an effect.

Dr. Jones noted that the next ICD meeting is September 14 – 15, 2011 with public comments due July 15. Noted this will be put on the CFSAC website.

A link has been placed on the CFSAC site for the CDC page for information on meetings of the ICD-9-CM Coordination and Maintenance Committee  

She noted she would check the rules to see if a member of the CFSAC or the Chair would be able to give public testimony at another advisory committee meeting. Mr. Krafchick said that if it were possible to send someone as a member of the committee, it would make a great deal of sense and be very important. Dr. Jones said they would figure out how this could happen. Ms. Holderman asked whether this notice, and any future notices where they might want to intervene, could be placed on the CDC website. She stated this cross listing would be useful.

Dr. Jones said that from her experience with the fast evolving HIV coding, there was a dialogue so that coding kept up. She expected there would be some connection, however not as comprehensive or active as that disease.

Dr. Mary Schweitzer, a member of the public, stated that the NCHS did come to CFSAC in 2005 and Dr. Reeves at the time was specific and said that CFS needed to be in R53 due to his own method of diagnosis. She suggested that this showed an obvious connection between the CFS side of CDC and NCHS at the time.

[Discussion of this agenda item ends.]

As these are my notes inserted into an extract from official Minutes, no permission to republish. The Shortlink to this post is http://wp.me/pKrrB-1dP. The PDF of the Minutes for Day One (May 10) is here: CFSAC Minutes 10 May 2011

Related material:

[1] Post: CFS orphaned in the “R” codes in US specific ICD-10-CM: http://wp.me/pKrrB-V4

[2] International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM). Note: The 2011 release of ICD-10-CM is now available and replaces the December 2010 release:
http://www.cdc.gov/nchs/icd/icd10cm.htm

[3] Post: US “Clinical Modification” ICD-10-CM. Article clarifying possible confusion between ICD-10, ICD-11 and the forthcoming US Clinical Modification, ICD-10-CM: http://wp.me/pKrrB-Ka

[4] Chronic Fatigue Syndrome Advisory Committee (CFSAC). The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Minutes of meetings, Recommendations and meeting videocasts:
http://www.hhs.gov/advcomcfs/meetings/index.html

DSM-5 Web Site Period for Comments has Been Extended to July 15

DSM-5 Web Site Period for Comments has Been Extended to July 15

Post #93 Shortlink: http://wp.me/pKrrB-1cB

The comment period for the second public review and feedback on proposals for draft criteria for DSM-5 was scheduled to close at midnight, yesterday, June 15.

I noted this morning that it was still possible to upload comments.

This afternoon, the APA has posted a notice on the DSM-5 Development site announcing a four week extension for submission of comments, until Friday, July 15.

APA announcement, today, June 16:

http://www.dsm5.org/Pages/Default.aspx

We are extending the period for submitting comments and suggestions to the web site regarding the proposed diagnostic criteria revisions, and the newly proposed organizational structure for DSM-5. We are appreciative of the ongoing interest in contributing to this process and are extending the period for submitting comments until July 15th. This extension will also permit reviews and comments for the newly proposed criteria and approach for the assessment of Personality Disorders, which are now being uploaded to the website for release. Our thanks to those who have already provided contributions to this interactive process.

I expect the APA has not received sufficient numbers of responses to comfortably announce in a news release. (Last year they reported having received over 8,000.)

I had asked Dr William Narrow, Task Force member, on June 4, when the DSM-5 website was offline for much of the day, for an extension until at least the end of June.

The extension announced today runs to July 15. Even better!

So those of you who did not submit now have additional 4 weeks in which to submit responses.

I want to see thousands telling the APA why they need to rip up these proposals for the revision of the “Somatoform Disorders” and start again.

Copies of patient organizations, patient and advocates responses, plus the Coalition4ME/CFS’s template letter here: http://wp.me/PKrrB-19a

Thanks to all of you who have already submitted. 

Suzy Chapman

Related material:

Final push: DSM-5 draft criteria

Coalition4ME/CFS issues Call to Action on DSM-5 proposals

Call for Action – Second DSM-5 public comment period