Clarification: Coalition for Diagnostic Rights website

Post #288 Shortlink: http://wp.me/pKrrB-3Dn

Clarification: Coalition for Diagnostic Rights

A website called Coalition for Diagnostic Rights has recently been launched.

The site includes references to Suzy Chapman and to Dx Revision Watch.

Suzy Chapman/Dx Revision Watch is not associated with or affiliated to the Coalition for Diagnostic Rights website or with any registered or unregistered organization associated with that site, and has no responsibility for content published on that site, or published in the name of that site on other platforms.

Suzy Chapman
Dx Revision Watch

DSM-5 November Round up #1

Post #285 Shortlink: http://wp.me/pKrrB-3zQ

Recent documents issued by the American Psychiatric Association at DSM-5 Development

Coding Changes Update: Important Coding and Criteria Updates: UPDATED 11/22/13

APA Statement issued 10.31.13: Statement on DSM-5 Text Error Pedophilic disorder text error to be corrected

Text Corrections: DSM-5 Paraphilic Disorders 10/31/13

Criteria Update: Updates to DSM-5 Adjustment Disorders: 10/15/13

Coding Changes Update: Neurocognitive Disorders Coding Updates: UPDATED 10/18/13

Psychiatric News Article: ICD Codes for Some DSM-5 Diagnoses Updated, Mark Moran, 10/7/13

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Commentary, Dx Summit

Attenuated Psychosis Syndrome Was Not Actually Removed from DSM-5

by Sarah Kamens

Note from Dx Revision Watch: Here is another codable diagnosis slipped in by APA before going to press. Between closure of the third DSM-5 draft review and publication of the final code sets a “Brief somatic symptom disorder,” where duration of symptoms is less than 6 months, was added under new category, “Other specified Somatic Symptom and Related Disorder” cross-walked to ICD 300.89 (F45.8) [DSM-5, Page 327]. This “Other specified” category can be used for symptom presentations that do not meet the full criteria for any of the disorders in the Somatic symptom and related disorders diagnostic class.
This means that as little as a single, distressing physical symptom + just one psychobehavioural symptom from the Somatic symptom disorder “B type” criteria, with less than 6 months chronicity would meet criteria for a codable mental disorder. A “Brief illness anxiety disorder” diagnosis of less than 6 months duration has also been inserted under this code – neither of which were in the third draft.

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Commentary from Christopher Lane, Ph.D., at Side Effects, Psychology Today:

The OECD Warns on Antidepressant Overprescribing Antidepressant consumption not matched by an increase in global diagnoses

Christopher Lane | November 22, 2013

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Commentary by Athena Bryan for Brown Political Review:

A Tale of Two Codices: the DSM, ICD and Definition of Mental Illness in America

Athena Bryan | November 21, 2013

Note from Dx Revision Watch: I have added a comment to this article, noting that APA has proposed the following new DSM-5 disorders for inclusion in the forthcoming U.S. specific ICD-10-CM via the September 18-19, 2013 meeting of the ICD-9-CM Coordination and Maintenance Committee: Binge eating disorder (BED); Disruptive mood dysregulation disorder (DMDD); Social (pragmatic) communication disorder; Hoarding disorder; Excoriation (skin picking) disorder; Premenstrual dysphoric disorder (PMDD); that DSM-5′s new constructs, Somatic symptom disorder (SSD) and Illness anxiety disorder were also proposed for insertion into the ICD-10-CM Tabular List and Index; that the ICD-10-CM is a “clinical modification” of WHO’s ICD-10 and is scheduled for U.S. implementation in October 2014; that its development from the ICD-10 has been the responsibility of NCHS.

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Three DSM-5 Somatic symptom disorder related items:

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Editorial British Journal of Psychiatry:

Editorial: Michael Sharpe, DSM-5 Somatic symptom disorder Work Group member BJP November 2013 203:320-321; doi: 10.1192/bjp.bp.112.122523:

Editorial: Somatic symptoms: beyond ‘medically unexplained’

Abstract:

Somatic symptoms may be classified as either ‘medically explained’ or ‘medically unexplained’ – the former being considered medical and the latter psychiatric. In healthcare systems focused on disease, this distinction has pragmatic value. However, new scientific evidence and psychiatric classification urge a more integrated approach with important implications for psychiatry.

Note from Dx Revision Watch: Unless NCHS rejects the proposal submitted at the September 18-19, 2013 meeting of the ICD-9-CM Coordination and Maintenance Committee, Somatic symptom disorder is destined for insertion into the ICD-10-CM Tabular List under F45 Somatoform Disorders as an inclusion term to F45.1 Undifferentiated somatoform disorder and for adding to the Alphabetic Index. See http://wp.me/pKrrB-3×1.

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Slide presentation: Francis Creed, University of Manchester, UK:

Can we now explain medically unexplained symptoms?

Francis Creed | Exeter, June 13, 2013 | PDF format

or open PDF [1.5MB] here Creed June 2013 slide presentation

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Book chapter: Polypharmacy in Psychiatry Practice, Volume I: Multiple Medication Use Strategies:

Polypharmacy in Psychiatry Practice, Volume I: Multiple Medication Use Strategies, Ritsner, Michael S (Ed.) 2013, XVII, 287 p ISBN: 978-94-007-5804-9 (Print) 978-94-007-5805-6 (Online)

Chapter 11: Multiple Medication Use in Somatic Symptom Disorders: From Augmentation to Diminution Strategies  

Most of Chapter 11, Pages 243-254 (pp 247-249 omitted) can be previewed on Google Books here

Objectors to insertion of DSM-5’s Somatic symptom disorder into ICD-10-CM

Post #283 Shortlink: http://wp.me/pKrrB-3y8

Michael Munoz, Executive Director, Rocky Mountain CFS/ME & FM Association has organized a joint letter of objection signed by 13 U.S. patient organizations and advocates for submission to NCHS. It can be read here:

http://www.rmcfa.org/index.html > http://www.rm-cfs-fms.citymaker.com/f/NCHS.pdf

or download PDF here: Joint response to NCHS 11.15.13

This joint submission had been signed by the following organizations and advocates:

Michael Munoz, Executive Director, Rocky Mountain CFS/ME & FM Association
Lori Chapo-Kroger, RN, President & CEO, PANDORA Org
Charmian Proskauer, President, Massachusetts CFIDS/ME & FM Association
Tamara Staples, President & Co-Founder, Fibromyalgia – ME/CFS Support Center, Inc.
Donna Pearson, Vice President, Massachusetts CFIDS/ME & FM Association
Jean Harrison, President and Founder, MAME – Mothers Against Myalgic Encephalomyelitis
Denise Lopez-Majano, Founder, Speak Up About ME
Rik Carlson, President, Immunedysfunction.org
Jennifer M. Spotila, JD., Occupy CFS blog, Patient Advocate
Billie Moore, Patient Advocate
Charlotte von Salis, JD, Patient Advocate
Mary Schweitzer, Ph.D., Patient Advocate
Mary Dimmock, Patient Advocate

I’d like to thank all those who have submitted objections to NCHS in opposition to the September 2013 C & M Committee meeting proposal to insert Somatic symptom disorder as an inclusion term in ICD-10-CM.

My submission can be read here PDF: Submission NCHS

Some additional organizations and individuals have advised me of their own submissions. If you have submitted a response on behalf of your organization or as a patient, advocate or professional and you would like your name or your organization’s name added to the list of responders below please shoot me an email or contact me via the Contact form with a link to your submission (if it has been placed in the public domain) and a couple of lines of credentials or stakeholder interest, if desired.

Bridget Mildon, Patient advocate and Founder of FND Hope, Inc. FND Hope is the only state registered non profit patient advocacy organization specifically for those assigned a diagnosed of Functional Neurological Disorder. Bridget was misdiagnosed with FND and continues to advocate for those with a FND diagnosis to receive appropriate patient care fndhope.org Submission
Mark Thompson, patient. Submission
Diane O’Leary, Ph.D. is a philosopher focused on the rights of medical patients denied medical care because of mistaken somatoform diagnoses. She is author of the book, Patient, Executive Director of the Sneddon’s Foundation, and author of numerous web and print entries on Sneddon’s Syndrome, a highly threatening cerebrovascular disease generally mistaken for somatoform disorders. Dr. O’Leary is author of “Peculiar Silence: The Problem of Error in Diagnosis of SSD” (a reply piece at BMJ). Dr O’Leary has coauthored several blogs, published and forthcoming, with Prof. Allen Frances at Huffington Post, Psychology Today and Psychiatric Times. New work is forthcoming for the National Organization for Rare Disorders and Ben’s Friends. An audio interview with Dr. O’Leary is available here. PDF Submission also Submission [On LinkedIn]
Suzy Chapman, DipAD, UK carer/advocate for young adult with long-term illness. Owner of website Dx Revision Watch, Monitoring the revision of DSM-5 and ICD-11. Co-author of journal papers and commentaries on the Somatic symptom disorder construct (with Professor Allen Frances). PDF Submission
Richard A. Lawhern, Ph.D. is an 18-year patient advocate. He writes content and moderates for “Living With TN,” a social networking site that supports nearly 5,000 chronic face pain patients in 117 countries – many of whom have been substantively harmed by mis-application of psychosomatic diagnoses. Submission
Angela Kennedy, M.A. (also retired R.G.N.), social science lecturer and researcher. Author of the book Authors of our own misfortune?: The problems with psychogenic explanations for physical illnesses (2012) Village Digital Press. Carer and parent of disabled woman who became ill at 12 years of age.
Gail Kansky, President, National CFIDS Foundation, Inc. Needham, MA http://www.ncf-net.org Submission
Jack Carney, Ph.D., DSW, Brooklyn, NY, Committee to Boycott the DSM-5, contributor to Mad in America. A social worker, Dr Carney writes on the contradictions and hypocrisies of the public mental health system and promotes and applauds acts of resistance to it.
Jennifer Brauer, BA, Women’s Studies, University of Massachusetts. Former certified paramedic, Emergency Medical Technician BLS, Bureau of The Emergency Medical Services, NY City Fire Dept. (1996-2005).
Samuel Wales, author, The Kafka Pandemic

Submission: Objection to proposal to insert DSM-5’s Somatic symptom disorder into ICD-10-CM

Post #281 Shortlink: http://wp.me/pKrrB-3×1

Information in this post relates to proposals submitted via the September ICD-9-CM Coordination and Maintenance Committee meeting for inclusion of additional codes and changes to the forthcoming US specific ICD-10-CM/PCS.

There are just five days is just one day left in which to submit objections to NCHS to the proposal to insert DSM-5’s Somatic symptom disorder into ICD-10-CM.

Submit objections via email by November 15 to Donna Pickett, CDC: nchsicd9CM@cdc.gov

Further information here: Keep SSD out of ICD-10-CM – November 15 deadline for objections

Please let me know if you or your organization or professional body has submitted comment or objections, with a link if your submission is being placed in the public domain.

We need to keep SSD out of ICD-10-CM

Please consider submitting an objection before the November 15 deadline.

If you submitted comment during any of the three DSM-5 public review periods or you are an advocate or clinician signatory to the Institute of Medicine (IOM) definition issue letters campaign please also consider submitting an objection to NCHS.

I have submitted the following:

PDF: Submission NCHS

Text:

To: Ms Donna Pickett, CDC

Re: Comment on proposals, September 18-19, 2013 meeting of the ICD-9-CM Coordination and Maintenance Committee

Diagnostic Agenda, Page 45: Additional Tabular List Inclusion Terms for ICD-10-CM

Add Somatic symptom disorder to ICD-10-CM Tabular List under F45 Somatoform Disorders as inclusion term to F45.1 Undifferentiated somatoform disorder.

Add Somatic symptom disorder to ICD-10-CM Alphabetical Index.

Requestor for proposal: Unspecified

——————————————————–

I am writing to object to the proposed insertion of Somatic symptom disorder into the ICD-10-CM Tabular List and Alphabetical Index.

Somatic symptom disorder is a new construct created by the American Psychiatric Association (APA) for DSM-5.

For DSM-5, the Somatoform Disorders have been dismantled. Four DSM-IV categories: somatization disorder [300.81], some presentations of hypochondriasis [300.7], pain disorder, and undifferentiated somatoform disorder [300.82] are eliminated and replaced with a single new construct, Somatic Symptom Disorder (SSD), cross-walked in DSM-5 to ICD 300.82 (F45.1).

The Somatic Symptom Disorder construct de-emphasizes “medically unexplained” as the central defining feature of this disorder group. The diagnosis does not require that the somatic symptoms are medically unexplained, instead, the focus shifts away from somatic symptoms to emotional, cognitive and behavioral disturbances and “maladaptive” responses: high levels of health anxiety; disproportionate and persistent concerns about the medical seriousness of the symptom(s); or an excessive amount of time and energy devoted to symptoms and health concerns.

Symptoms may or may not be associated with another medical condition: SSD allows for the application of a mental health diagnosis in patients with “established general medical conditions or disorders” like diabetes, heart disease and cancer or presenting with “somatic symptoms of unclear etiology” if the clinician considers the patient otherwise meets the new criteria.

To meet the requirements for DSM-IV Somatization Disorder, a rigorous criteria set needed to be fulfilled: a history of many medically unexplained symptoms before the age of thirty, resulting in treatment sought or psychosocial impairment. And a high diagnostic threshold: a total of eight or more medically unexplained symptoms from four, specified symptom groups, with at least four pain, two gastrointestinal, one psychosexual and one pseudoneurological symptom.

In DSM-5, the requirement for eight symptoms has been dropped to just one or more persistent, non specific, distressing somatic symptoms and the clinician’s perception of “excessive” or “maladaptive” response to the symptom or symptoms.

• These changes for DSM-5 represent a radical restructuring of the DSM-IV Somatoform Disorder categories and a new construct for which much remains to be determined.

On Day Two of the September ICD-9-CM Coordination and Maintenance Committee meeting, Dr Darrel Regier presented and discussed rationales, coding proposals and timings for six new DSM-5 disorders that the APA has proposed for insertion into ICD-10-CM. But the proposal to add the new DSM-5 Somatic symptom disorder and Illness anxiety disorder category terms to ICD-10-CM did not form part of Dr Regier’s presentation on behalf of the APA.

As it is unspecified within the Diagnosis Agenda and during the meeting presentations, it is unclear whether these two proposals are being requested by the APA, by NCHS/CMS, or by other parties or individuals.

• My first concern is that no description of Somatic symptom disorder, no rationale for why this ICD-10-CM change is needed (including clinical relevancy) and no supporting clinical and literature references for the validity of Somatic symptom disorder as a new disorder term were published in the Diagnosis Agenda.

At the public meeting, no presentation had been made on behalf of APA, or by representatives of NCHS or CMS, or by anyone else for the specific proposal to add Somatic symptom disorder as an inclusion term under the ICD-10-CM Somatoform disorders and there was no discussion of this proposal during the course of the meeting [1][2].

There is an expectation that the committees overseeing the development and revision of the draft for the ICD-10-CM will give due consideration to the applicability, clinical utility and reliability of any proposal for the inclusion of a new disorder construct before granting approval for addition to the Tabular List and Index, and that the comments and objections received during the public response period will also be considered.

The lack of rationales and references for supportive evidence provided by the requestors hinders public participation in the response process.

• The absence from both the Diagnosis Agenda document and the meeting presentations of rationales, clinical relevancy and supporting clinical and literature references to enable public scrutiny, consideration and informed responses to this proposal should disqualify SSD from consideration for implementation during a partial code freeze or for consideration for implementation in October 2015.

The burden of proof before introducing any new diagnosis into a classification system is that it has a favourable risk to benefit ratio. This new construct created by the APA for its DSM-5 merits the same level of scrutiny and risk to benefit evaluation as would be expected to be applied to any proposed new disorder/disease under consideration for inclusion in any chapter of ICD, whether this is for the updating of the ICD-10-CM draft, the international ICD-10, the several clinical modifications of ICD-10 or the drafting of ICD-11.

A number of papers have remarked on the paucity of rigorous evidence for the validity, reliability, acceptability, safety and utility of the SSD construct applied to adults and children in diverse clinical settings and across a spectrum of health and allied professionals.

There is no significant body of published research on the epidemiology, clinical characteristics or treatment of the Somatic symptom disorder construct [3][4][5].

In a paper published in the Journal of Psychosomatic Research, September 2013, the SSD work group concedes the lack of clinical evidence for its new construct and acknowledges the “small amount of validity data concerning SSD”; “that much remains to be determined” about the utility and reliability of the specific SSD criteria and its thresholds when applied in busy, general clinical practice, and there are “vital questions that must be answered” as they go forward [6].

• As an under researched, poorly validated disorder construct, Somatic symptom disorder does not meet NCHS/CMS criteria for “new diseases/new technology procedures, and any minor revisions to correct reported errors in these classifications” and should be rejected for consideration for implementation during a partial code freeze but also rejected for consideration for implementation in October 2015.

Concerns for the looseness of the SSD definition and the ease with which these new criteria can be met have been discussed in a number of published papers and commentaries [7][8][9].

The over-inclusiveness of the SSD diagnosis is borne out by the results of the DSM-5 field trial study reported by the chair of the Somatic symptom disorder work group at the 2012 annual meeting of the American Psychiatric Association.

15% of the ‘diagnosed illness’ study group, comprising patients with cancer or coronary disease, were caught by SSD and would meet the criteria for application of an additional mental disorder diagnosis.

26% of the ‘functional somatic’ study group, patients with irritable bowel syndrome or chronic widespread pain, met the SSD criteria.

SSD has a high false positive rate – capturing 7% of the ‘healthy’ field trial control group.

It is also disturbing that the SSD work group (which included no primary care physicians) appears not to have undertaken any field trials into the safety of application of the SSD criteria in children and adolescents.

NCHS/CMS provides no references for data for the application of SSD in children within the Diagnosis Agenda, although the DSM-5 text clearly indicates APA’s intention that SSD is a diagnosis that may also be applied to children with persistent, distressing somatic symptoms.

Potential implications for the application of a diagnosis of SSD:

I am not persuaded that the new SSD construct and criteria can be safely applied outside the optimal conditions of field trials, in settings where practitioners may not necessarily have adequate time for, or instruction in the administration of diagnostic assessment tools, and where decisions to code or not to code may hang on the arbitrary and subjective perceptions of a wide range of end-users who may lack clinical training in the application of mental disorder criteria.

Misapplication of highly subjective and loose, easily met criteria, especially in busy primary care practice, may result in inappropriate diagnoses of mental disorder and inappropriate medical decision making [10], with considerable implications for patients (see Appendix).

A mental disorder diagnosis of SSD can be applied as a “bolt-on” to any chronic medical diagnosis, eg patients with diabetes, angina, cancer, MS, cardiovascular disease, ME and CFS, IBS, chronic widespread pain (aka fibromyalgia) or to patients with a chronic pain condition or with persistent symptoms of unclear etiology.

Patients with chronic, multiple bodily symptoms due to rare diseases, difficult to diagnoses diseases, or multi-system diseases like Behçet’s disease, which can take several years to arrive at a diagnosis, may be especially vulnerable to missed diagnosis or to misdiagnosis with a mental disorder, which may impede access to further testing, investigations, interventions and effective treatments (and result in increased claims against practitioners for medical negligence).

Patients with chronic fatigue syndrome (CFS), “almost a poster child for medically unexplained symptoms as a diagnosis,” according to SSD work group chair, Joel E Dimsdale, or chronic Lyme disease, Gulf War illness, chemical injury and chemical sensitivity; women with potential symptoms of gynecological disease, like ovarian cancer, already often late-diagnosed, endometriosis or interstitial cystitis, or patients with vague neurological symptoms may be particularly vulnerable to misapplication or misdiagnosis with a mental health disorder under the SSD criteria.

There has been considerable opposition to the introduction of this new, poorly tested construct into the DSM-5 amongst patients, carers, advocates, consumer organizations, mental health practitioners and clinicians and considerable concern for the implications for diverse patient populations that the Somatic Symptom Disorder category will provide a “dustbin diagnosis” for the so-called “functional somatic syndromes,” for those living with chronic pain and for patients with persistent, but as yet undiagnosed, symptoms of disease.

• NCHS/CMS has published no independent field trial data and provided no rationales or clinical and literature references to inform public responses. Given the lack of published evidence for the validity and safety of SSD as a construct in adults and children, there is insufficient basis for the approval of SSD for inclusion within ICD-10-CM and it would be scientifically unsafe, premature and against the public interest to include this new construct within ICD.

The proposal for addition to the ICD-10-CM as an inclusion term during a partial code freeze should be rejected. There should be no implementation in October 2015 as an inclusion term to F45.1 or to any other existing code, or with a unique code created.

Appendix:

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

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

• Patients with cancer and life threatening diseases may be reluctant to report new symptoms that might be early indicators of recurrence, metastasis or secondary disease for fear of attracting a diagnosis of SSD or of being labelled as “catastrophisers.”

• Application of an additional diagnosis of SSD 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 SSD 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, education and workplace accommodations, and the perceptions of medical staff during hospital admissions and accident and emergency admissions.

• Patients prescribed psychotropic drugs for perceived unreasonable levels of “illness worry” or “excessive preoccupation with symptoms” may be placed at risk of iatrogenic disease or subjected to inappropriate and costly behavioural therapies.

• For multi-system diseases like Multiple Sclerosis, Behçet’s disease 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.

• The burden of the DSM-5 changes to Somatoform Disorders will fall particularly heavily upon women who are more likely to be casually dismissed when presenting with physical symptoms and more likely to be prescribed inappropriate antidepressants and anti-anxiety medications for them.

• Proposals allow for the application of a diagnosis of SSD to children and where a parent is considered excessively concerned with a child’s symptoms. 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 behavior” 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 in the U.S. and Europe with a child or young adult with chronic illness, notably with Chronic fatigue syndrome or ME. It may happen more frequently with a diagnosis of a chronic childhood illness + SSD.

Thank you for your consideration.

References:

1. September 18-19, 2013 meeting of the ICD-9-CM Coordination and Maintenance Committee Diagnosis Agenda.

2. September 18-19, 2013 meeting of the ICD-9-CM Coordination and Maintenance Committee Summary of Diagnosis Presentations.

3. DSM-5 Somatic Symptom Disorders Work Group Disorder Descriptions and Justification of Criteria – Somatic Symptoms, pub. May 2011, for second DSM-5 stakeholder review.

4. Robert L. Woolfolk and Lesley A. Allen (2012). Cognitive Behavioral Therapy for Somatoform Disorders, Standard and Innovative Strategies in Cognitive Behavior Therapy, Dr. Irismar Reis De Oliveira (Ed.), ISBN: 978-953-51-0312-7

5. Ghanizadeh A, Firoozabadi A. A review of somatoform disorders in DSM-IV and somatic symptom disorders in proposed DSM-V. Psychiatr Danub. 2012 Dec;24(4):353-8.

6. Dimsdale JE, Creed F, Escobar J, Sharpe M, Wulsin L, Barsky A, Lee S, Irwin MR, Levenson J. Somatic Symptom Disorder: An important change in DSM. J Psychosom Res. 2013 Sep;75(3):223-8. Epub 2013 Jul 25.

7. Frances A. The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill. BMJ. 2013 Mar 18;346:f1580. doi: 10.1136/bmj.f1580.

8. Frances A. DSM-5 Somatic Symptom Disorder. J Nerv Ment Dis. 2013 Jun;201(6):530-1. doi: 10.1097/NMD.0b013e318294827c.

9. Frances A, Chapman S. DSM-5 somatic symptom disorder mislabels medical illness as mental disorder. Aust N Z J Psychiatry. 2013 May;47(5):483-4. doi: 10.1177/0004867413484525.

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

Interest:

Carer/advocate for young adult with long-term medical condition. Owner of website Dx Revision Watch, Monitoring the revision of DSM-5 and ICD-11. Co-author, journal papers and commentaries on the SSD construct (with Professor Allen Frances).

[End of submission]

Keep SSD out of ICD-10-CM – November 15 deadline for objections

Post #278 Shortlink: http://wp.me/pKrrB-3vK

Update: My submission on behalf of Dx Revision Watch can be read here.

The American Psychiatric Association (APA) has proposed the following DSM-5 disorders for inclusion in the forthcoming ICD-10-CM (Pages 32-44, September 2013 Diagnosis Agenda):

Binge eating disorder (BED);
Disruptive mood dysregulation disorder (DMDD);
Social (pragmatic) communication disorder;
Hoarding disorder;
Excoriation (skin picking) disorder;
Premenstrual dysphoric disorder (PMDD)

Additionally, APA has petitioned for revisions to the ICD-10-CM listing for gender dysphoria in adolescents and adults, which is not a new disorder.

On Page 45 and 46 of the Agenda, under Additional Tabular List Inclusion Terms for ICD-10-CM a number of other additions and changes to specific Chapter 5 F codes are being proposed, including the insertion of Somatic symptom disorder (SSD) and Illness anxiety disorder.

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A final reminder of the deadline for comments and objections in relation to Somatic symptom disorder

Q: When do objections need to be in by and where should they be sent?

A: Submit objections via email by November 15 to Donna Pickett, CDC: nchsicd9CM@cdc.gov

Q: Can anyone submit objections?

A: Yes. And from as many patient, professional and advocacy groups as possible, particularly from the U.S. but also international objections. Although this concerns potential changes to the draft of the U.S. specific ICD-10-CM there may be implications for ICD-11.

Q: What is being proposed?

A: The American Psychiatric Association has requested 6 new DSM-5 disorders for consideration for inclusion in the forthcoming ICD-10-CM via the September 18-19, 2013 ICD-9-CM Coordination and Maintenance Committee meeting.

APA’s rationales for these requested additions, the coding proposals and timings are set out on Pages 32 thru 44 of the September meeting Diagnosis Agenda.

But on Pages 45-46, under “Additional Tabular List Inclusion Terms for ICD-10-CM”, a further 17 proposals and changes are listed for consideration for addition to the Mental and behavioral disorders F codes.

These include the addition of the new DSM-5 categories, Somatic symptom disorder (SSD) and Illness anxiety disorder, as inclusion terms, under the ICD-10-CM Somatoform disorders section, thus:

ICD10CM 4

Source: September 2013 Diagnosis Agenda, Page 45

The Diagnosis Agenda can be downloaded here: http://www.cdc.gov/nchs/data/icd/icd_topic_packet_sept_181913.pdf

Q: Is “Somatic symptom disorder” being proposed to replace several existing ICD-10-CM Somatoform disorders categories and is a unique new code proposed to be assigned to SSD?

A: No, not in the proposal as it stands in the Diagnosis Agenda document.

The proposal is to add SSD as an inclusion term under F45.1 Undifferentiated somatoform disorder. This is the ICD-10-CM code to which SSD is cross-walked in the DSM-5.

Illness anxiety disorder is being proposed as an inclusion term under F45.21 Hypochondriasis. This is the ICD-10-CM code to which Illness anxiety disorder is cross-walked in the DSM-5.

Q: What should I include in my objection?

A: Responders are being asked by NCHS/CMS to consider the following: Whether you agree with a proposal, disagree (and why), or have an alternative proposal to suggest.

Responders are also being asked to comment on the timing of those proposals that are being requested for approval for October 2014: Does a specific proposal for a new or changed Index entry and Tabular List entry meet the criteria for consideration for implementation during a partial code freeze [6] or should consideration for approval be deferred to October 2015?

And separately, and where applicable, comment on the creation of a specific new code for the condition effective from October 1, 2015. (This is not applicable in the case of SSD or Illness anxiety disorder.)

• Since no timing has been specified for the proposed insertion of the requests on Pages 45-46, I suggest stating that as a poorly validated disorder construct, SSD does not meet NCHS/CMS criteria for “new diseases/new technology procedures, and any minor revisions to correct reported errors in these classifications” and should not be considered for approval during a partial code freeze.

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On Day Two of the meeting, APA’s Darrel Regier presented 7 proposals for additions or changes, discussed APA’s rationales for each of these requests, in turn, and fielded any resulting questions or comments from the floor or from the meeting chairpersons.

Rationales, references, specific coding proposals for addition as inclusion terms in October 2014 (and subsequent code modifications in those cases where a unique new ICD code is proposed to be created for the term effective from October 2015) are also set out in the Agenda document (from Page 32).

But there was no presentation on behalf of APA, or by representatives of NCHS or CMS, or by anyone else for the specific proposal to add Somatic symptom disorder (SSD) and Illness anxiety disorder as inclusion terms under the ICD-10-CM Somatoform disorders.

No rationales for their inclusion or references to scientific evidence to support the validity of these new DSM-5 constructs have been published in the Diagnosis Agenda and there was no discussion of these two proposals during the course of the meeting.

The requesters of the proposals set out on Pages 45-46 are not identified, so it is unclear whether these “Additional Tabular List Inclusion Terms” are being proposed by APA or by NCHS/CMS.

• I suggest you comment in submissions on the absence from both the Agenda document and the meeting presentations of rationales and references to enable proper public scrutiny, consideration and informed responses to the proposed inclusion of these two terms.

All that was said about the list of proposals on Pages 45-46 was the following, after Dr Regier had wrapped up his own presentation and handed the podium back to the Co-Chair:

[Unofficial transcription from videocast] Donna Pickett (CDC):

“…And just to complete the package, there are other Tabular List proposals that appear on Page 45 and 46 that we would also invite your comments on. And again, with some of the terminology changes that Dr Regier has described the intent here is to make sure that if those terms are being used, that they do have a home somewhere within ICD-10-CM to facilitate people looking these up. So we invite comments. We’re showing the Tabular List proposed changes; however, there obviously would be associated Alphabetic Index changes with that which we didn’t show just to keep the package a little bit smaller.”

• You might also consider quoting the APA’s disturbing DSM-5 field trial data (see March 2013 BMJ commentary by Prof Allen Frances for data).

• Or quote the SSD work group’s recognition of the shaky foundations and lack of scientific robustness for its new DSM-5 construct:

In its recent paper: Somatic Symptom Disorder: An important change in DSM, the SSD work group acknowledges the “small amount of validity data concerning SSD” and that much “remains to be determined” about the utility and reliability of the specific SSD criteria and its thresholds when applied in busy, general clinical practice, and there are “vital questions that must be answered.” [7]

• There is no body of published research on the epidemiology, clinical characteristics or treatment of the APA’s Somatic symptom disorder construct.

• There is a paucity of rigorous evidence for the validity, safety, reliability, acceptability and utility of the SSD construct when applied to adults and children in diverse clinical settings and across a spectrum of health and allied professionals.

• NCHS/CMS has insufficient scientific basis for the approval of SSD as a valid new disorder construct for inclusion within ICD; has published no independent field trial data and provided no rationale to inform public responses.

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Why is it important to submit objections?

If SSD is inserted as an inclusion term to an existing code in ICD-10-CM this may leverage the future replacement of several existing ICD-10-CM Somatoform disorders categories with the SSD construct, to more closely mirror DSM-5.

Inserting SSD as an inclusion term into ICD-10-CM may make it easier for ICD-11 to justify its proposal for a Bodily distress disorder to replace several existing ICD-10 Somatoform disorders categories. Though BDD may not mirror SSD exactly, it is anticipated to incorporate SSD’s characteristics and thereby facilitate harmonization between ICD-11 and DSM-5 disorder terminology.

As set out many times during the three DSM-5 stakeholder reviews and in several papers published earlier this year with Prof Allen Frances, DSM-5 SSD has highly subjective and loose, easily met criteria.

A mental health diagnosis of SSD can be applied as a “bolt-on” to any chronic medical diagnosis – to patients with cancer, diabetes, heart disease, MS, angina, ME and CFS, IBS, FM, chronic pain conditions. It can be applied to adults and children (or to the caregivers of children with chronic illnesses).

SSD may become the dustbin diagnosis into which those with persistent, “medically unexplained” somatic (bodily) symptoms will be shovelled. Patients with rare or hard to diagnose illnesses may find themselves mislabelled with SSD.

Implications for the potential impact on patients for an additional diagnosis of SSD are set out (about half way down the page) in my report Somatic Symptom Disorder could capture millions more under mental health diagnosis and in copies of submissions to the three DSM-5 stakeholder review periods, collated on this site.

Also in Mary Dimmock’s 2012 SSD Call to Action materials.

There is a now a copy of the 20 March, 2013 BMJ commentary “The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill” by Prof Allen Frances (with Suzy Chapman) on the NAPPS Skills (Northern Association for Persistent Physical Symptoms) site (Vincent Deary’s group) in this PDF.

If you’ve not already done so, please get an objection in before November 15.

And please alert all contacts, advocates, patient groups and professionals to the November 15 deadline and the need for input and objections.

Further information:

1 Crazy Like Us: How the U.S. Exports Its Models of Illness – DSM-5 is Americanizing the world’s understanding of the mind Christopher Lane, Ph.D. in Side Effects, October 9, 2013

2. Dx Revision Watch: APA petitions CMS for additions to ICD-10-CM: Deadline for public comment and objections November 15: http://wp.me/pKrrB-3tq

3. Dx Revision Watch: Videos and meeting materials: September 18- 19 ICD-9-CM Coordination and Maintenance Committee meeting: http://wp.me/pKrrB-3tV

4. Article: ICD Codes for Some DSM-5 Diagnoses Updated, Mark Moran, Psychiatric News, October 07, 2013:

http://psychnews.psychiatryonline.org/newsarticle.aspx?articleID=1757346

5. ICD-9-CM/PCS Coordination and Maintenance Committee Meeting September 18-19, 2013

September C & M meeting Diagnosis Agenda Proposals PDF document [PDF – 342 KB]

http://www.cdc.gov/nchs/data/icd/icd_topic_packet_sept_181913.pdf

6. Partial Freeze of Revisions to ICD-9-CM and ICD-10-CM/PCS

7. Somatic Symptom Disorder: An important change in DSM. Dimsdale JE, Creed F, Escobar J, Sharpe M, Wulsin L, Barsky A, Lee S, Irwin MR, Levenson J. J Psychosom Res. 2013 Sep;75(3):223-8. Epub 2013 Jul 25.

Media coverage: Karina Hansen now detained six months against her will in Hammel Neurocenter, Denmark

Post #273 Shortlink: http://wp.me/pKrrB-3kV

Update at September 9: According to reports linked to by ME Forenginen, Danmark, on Facebook:

The Hansen parents had a court hearing on September 5, 2013, to challenge the legality of Karina’s guardianship. Karina’s removal from her home by the authorities and her continued detention at Hammel Neurocenter was not scheduled to be covered during the court proceedings.

The Danish Aktion Karina/Term group that has been protesting outside Hammel Neurocenter and the Aarhus Research Clinic for Functional Disorders (the clinic that is advising Hammel Neurocenter on Ms Hansen’s treatment), are planning a new demonstration in front of the Ministry of Health. The event is scheduled for September 26, in Copenhagen.

For more information on this event: https://www.facebook.com/events/536076826466062/

Update at August 30: It is understood that a meeting between the Hansen parents and physicians at Hammel Neurocenter took place on Tuesday, August 28; that Dr Gerdes and lawyer, Mr Tørnes, were not permitted to attend this meeting and that the parents were denied access to visit their daughter.* I will post further information if and when an official update is released.

*Source: https://www.facebook.com/meforeningen.dk

There have been further protests staged, this week, at Hammel Neurocenter:

Aktion Karina – Myalgisk Encephalomyelitis (ME) Aktion 2, Dag 1:

http://www.youtube.com/watch?v=lFfilet_upo

Update: According to ME Forenginen, Danmark, on Facebook, the Hansen parents have been called to a meeting in the next couple of weeks with Merete Stubkjær Christensen, chief physician, Regionshospitalet, Hammel Neurocenter. Doctor Stig Gerdes and lawyer, Paul Tørnes, have sent a further letter to the Aarhus Research Clinic for Functional Disorders (that is advising Hammel Neurocenter on Ms Hansen’s treatment), following a telephone conversation with the Clinic. It is understood that Dr Gerdes and Mr Tørnes were hoping to attend this anticipated meeting with Merete Stubkjær Christensen to support the parents.

Update: YouTube: Danish Aktion Karina/Term group protest (Day 5):
http://www.youtube.com/watch?v=0tAAJvJmhH4

Update: YouTube: Danish Aktion Karina/Term group protest Hammel Neurocenter (Day 4): http://www.youtube.com/watch?v=OqDUJworpaY

Update: New article, August 14: Dagbladet Holstebro (Subscription required for access)

http://dagbladet-holstebro-struer.dk/holstebro/beskyldte-mor-for-alvorlige-svigt-af-syg-datter

Beskyldte mor for alvorlige svigt af syg datter (Accused mother of serious failure of sick daughter)

Update: YouTubes: Danish Aktion Karina/Term group protests about Karina Hansen’s treatment (Days 1 to 5):

Aktion Karina Day 1: http://www.youtube.com/watch?v=zDBhlnw6DMo

Aktion Karina Day 2: http://www.youtube.com/watch?v=yAf2fH8qhuQ

Aktion Karina Day 3: http://www.youtube.com/watch?v=vpCd9ZGAEY8

Aktion Karina Day 4: http://www.youtube.com/watch?v=OqDUJworpaY

Aktion Karina Day 5: http://www.youtube.com/watch?v=0tAAJvJmhH4

“Karina er en 24 årig ME-syg kvinde, som er blevet tvangsindlagt på Hammel Sygehus, underkastet regler for psykiatrien og hun er under psykiaterne på Forskning klinikken for de såkaldte funktionelle lidelsers bestemmelser og fulde kontrol.

“Karinas telefon er gået død, og er ikke mere i brug. Karina har ikke adgang til en PC. Familiens advokat har fået at vide, at han ikke er Karinas advokat. Karina må ikke modtage besøg.

“Karinas retssikkerhed er alvorligt truet. Karina udsættes for fysisk træning, hvilket ofte skader Me-patienter. Karina har ikke set sine forældre siden indlæggelsen for over 100 dage siden. Psykiaterne på Forskningsklinikken for de såkaldte funktionelle lidelser har fået ansvaret for ME-syge i DK, selvom udenlandske og indlandske eksperter mener, at ME er en neurologisk eller en immunologisk sygdom og ikke en psykiatrisk sygdom. Psykiaterne har voldsomt brug for en succeshistorie, da de har fået ansvaret for et helt nyt ME-videns-center, som fremover skal have ansvaret for ME-syge i DK. Psykiaterne på Forskningsklinikken vil ikke samarbejde med specialister i ME, men kun med andre psykiatere.”

Aktion Karina/Term site – https://www.facebook.com/events/214896588665066/

Update: New article, August 14: Ekstra Bladet

http://ekstrabladet.dk/nationen/article2066198.ece

Voldsomt: 5 betjente tvangsindlægger 24-årig  (Violently: 5 cops forced hospitalization of 24-year-old)

Lige nu demonstrerer ca. 20 borgere mod tvangsindlæggelsen af 24-årige karina, der blev fjernet fra hjemmet – uden forældrenes accept Af: Thomas Harder

(Right now, around 20 citizens demonstrate against forced admission of 24 year old Karina, who was removed from home – without parental consent By Thomas Harder)

“De har taget hende og har gjort hende til en psykiarisk sygdom – men hun er fysisk syg, og vi er meget bekymrede for hende”

(“They have taken her and assigned her a psychiatric illness – but she is physically ill, and we are very concerned for her”)

As previously posted on August 14

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“…They have not seen their adult daughter for almost six months, after she was forcibly hospitalized in Hammel Neurocenter. Against her parents’ wishes. Against her own wishes. Not even their daughter’s lawyer can get an explanation…”

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KHBW2On 12 February, 24 year old Karina Hansen of Holstebro, Denmark, was removed from her home by five policemen, two doctors, two social workers and a locksmith, who threatened to break down the door to the family home.

She was taken, against her will, to Hammel Neurocenter. For six months, now, Karina has remained in hospital and is denied visits from her parents, Per and Ketty Hansen.

Karina is unable to access her legal representative because the hospital and health authorities refuse to acknowledge the lawyer whom she engaged to represent her, in 2012.

The authorities have appointed a guardian over the heads of Karina and her parents, who held power of attorney for their daughter, pictured on the left.

Rebecca Hansen, chairman, ME Foreningen, Danmark (ME Association, Denmark), who is not a relative, has been acting as lay advocate to the Hansen family. The most recent update on Karina’s situation was published here on Dx Revision Watch, in June.

For links to translations of Update 2: Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story in Danish, German and Dutch go here.

Professor Per Fink, Aarhus Research Clinic for Functional Disorders is advising Hammel Neurocenter on Karina’s treatment – a treatment regime she has made plain she does not wish to receive, in a setting she does not wish to be detained in.

Her rights, as a patient, to determine where and by what means and for how long she is treated, to receive documentation and a treatment plan and access to her family and her lawyer, are being denied by Danish Health authorities.

For information on Aarhus Research Clinic and Per Fink et al’s construct of Bodily Distress Syndrome, see Part Two of Dx Revision Watch Post: ICD-11 Beta draft and Bodily Distress Disorders; Per Fink and Bodily Distress Syndrome

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National media coverage of the case

On August 10, four reports were published by the newspaper, BT, Danmark (a Danish national tabloid):

http://www.bt.dk/danmark/foraeldre-naegtet-at-se-syg-datter-mor-hvordan-skal-jeg-komme-vaek-herfra

Forældre nægtet at se syg datter: ’Mor, hvordan skal jeg komme væk herfra?’

(Parents are refused [visits] to see sick daughter: ‘Mom, how do I get out of here?’)

by Morten Eggert

also

http://www.bt.dk/danmark/derfor-blev-24-aarige-k-fjernet-fra-sine-foraeldre

Derfor blev 24-årige K fjernet fra sine forældre

(Why was 24 year old K removed from her parents?)

also

http://www.bt.dk/danmark/24-aarig-patient-i-slaar-mig-ihjel

24-årig patient: I slår mig ihjel

(24 year old patient: “You are killing me”)

(As I don’t speak Danish and since this is a very sensitive case, I prefer not to provide imperfect and potentially inaccurate auto translations or summaries; the gist of these reports can be roughly auto translated via Google, Bing or other translators.)

also

[Image] http://xa.yimg.com/kq/groups/86982676/219750998/name/BT

Politiker: De må ikke tvangsindlægge

(Politician: They don’t forcibly hospitalize)

“Liselott Blixt, health spokesperson for Dansk Folkeparti (The Danish People’s Party) and Chairman of the Folketing § 71-supervision, which keeps an eye on the use of coercion, has now prompted a statement from Region Midtjylland on this deeply unhappy case…”

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Local media coverage

A local paper (Dagbladet Holstebro-Struer) also reported on the case, last week, on 10 August, with a four page interview with Per and Ketty Hansen. Subscribers can read the interview with Karina’s parents, in Danish, online, here:

http://dagbladet-holstebro-struer.dk/holstebro/de-tog-vores-datter

They took our daughter

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From ME Forenginen, Danmark’s Facebook page: https://www.facebook.com/meforeningen.dk

On August 13, BT published an interview with ME Forenginen, Danmark’s, Vice-Chair, Cathrine Engsig, about the treatment of Karina Hansen and her parents:

[Image] https://fbcdn-sphotos-b-a.akamaihd.net/hphotos-ak-frc3/p480x480/995990_412997052143731_905956157_n.jpg

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Demonstrations

According to ME Forenginen, Danmark’s, Facebook page, a non-affiliated Danish group has started a 5 day demonstration in Aarhus and Hammel to raise awareness of Karina’s plight.

A series of demonstrations started on Monday, 12 August, and ends on Friday, 16 August, in the afternoon.

More information here: https://www.facebook.com/events/214896588665066

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Initiatives

According to ME Forenginen, Denmark’s Facebook page, doctor Stig Gerdes and lawyer Stig Tornaes have contacted psychiatrist, Professor Per Fink, Aarhus Research Clinic for Functional Disorders, who is advising Hammel Neurocenter on Karina’s treatment. A copy of their letter can be read, in Danish, on ME Forenginen, Danmark’s, Facebook page, here:

https://www.facebook.com/meforeningen.dk

I will update when further official updates or media coverage become available.

Clarification
Reports and updates on Dx Revision Watch site on the Hansen family’s situation are being published as provided by, and in consultation with, Rebecca Hansen, Chairman, ME Foreningen, Danmark (ME Association, Denmark), or edited from reports as provided. Dx Revision Watch site has no connection with any petitions or initiatives, or with any websites, social media platforms or other platforms set up to promote petitions or initiatives, or to otherwise raise awareness of the Hansen family’s situation. All enquiries in relation to any petitions or other initiatives, or platforms associated with them should be addressed directly to the organizers, sponsors or owners responsible for them.

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Previous posts

Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-2Xc

Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story: Update 1: http://wp.me/pKrrB-35o

Update 2: Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-390

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Links

Website for ME Foreningen, Danmark www.me-foreningen.dk

Official petition launched and sponsored by the ME Association of Denmark, and approved by the Hansen family: http://www.ipetitions.com/petition/postcardtokarina/
For more information on the ME Association of Denmark’s postcard campaign go here on Facebook
For information on Bodily Distress Syndrome see Part Two of Dx Revision Watch Post: ICD-11 Beta draft and BDD, Per Fink and Bodily Distress Syndrome
Opdater 2: Menneskerettighederne nægtet: Noget råddent i staten Danmark: Karina Hansen: http://wp.me/pKrrB-390
Update 2: Human Rights denied: Something rotten in the state of Denmark: Karina Hansen’s story: http://wp.me/pKrrB-390
Update 2: Ontkenning van mensenrechten: Iets verrot in de staat van Denemarken: Het verhaal van Karina Hansen: http://wp.me/pKrrB-390
Update 2: Menschenrechtsverstoß: Etwas ist faul in Dänemark: Karina Hansens Geschichte: http://wp.me/pKrrB-390
Update 2: Droits de l’Homme: Il y a quelque chose de pourri au royaume du Danemark: l’histoire de Karina Hansen: http://wp.me/pKrrB-390
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