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DSM 5 Freezes Out Its Stakeholders

Scary news. The Chair of the DSM 5 Task Force, Dr. David Kupfer, has indicated that 90 percent of the decisions on DSM 5 have already been made. Why so scary? DSM 5 proposes a radical redefinition of the boundary between mental disorder and normality.
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Scary news. The Chair of the DSM 5 Task Force, Dr. David Kupfer, has indicated that 90 percent of the decisions on DSM 5 have already been made.

Why so scary? DSM 5 is the new revision of the psychiatric diagnosis manual, meant to become official in May 2013. It proposes a radical redefinition of the boundary between mental disorder and normality, greatly expanding the former at the expense of the latter. Understandably, this ambitious medicalization of the human condition has generated unprecedented opposition, both from the public and from mental heath professionals. To top it off, the DSM 5 proposals are poorly written, unreliable, and likely to cause the misdiagnosis and the excessive treatment of millions of people.

Under normal circumstances the DSM 5 team would have taken the many criticisms to heart, gone back to the drawing board, and improved the quality and acceptability of their product. After all, the customer is very often right. But this DSM process has been strangely secretive, unable to self-correct, and stubbornly closed to suggestions coming from outside. As a result, current DSM 5 proposals show very little improvement over poorly done first drafts posted in February 2010.

Is there any hope of a last-minute save? I have gathered opinions from three well-informed DSM 5 watchers. They were asked to assess the current state of DSM 5 and offer suggestions about future prospects. The first comment comes from Suzy Chapman, a public advocate, whose website provides the most comprehensive documentary source on the development of DSM 5 and ICD-11. Ms Chapman writes:

DSM 5 consistently misses every one of its deadlines and then fails to update its website with a new schedule. The Timeline was finally revised a couple of weeks ago, but we are still no nearer to a firm date for the final period of invited public comment. We've known since November that DSM 5 is stuffed as far as its planned January-February comment period and that Dr Kupfer now reckons "no later than May" -- but all the website says is "Spring." That's no use to those of us who need to alert patient groups and their professional advisers.

Given Dr Kupfer's statement that 90% of decisions have already been made, all of DSM 5 will probably be predetermined by "Spring" -- with or without input from the public or the field. I am disturbed by the timeline instability; the constant delays; the lack of meaningful response to previous public comment; and now the timing of a final round of public feedback only after decisions have already been made. All this suggests a DSM 5 that doesn't really care what stakeholders think; that feedback won't have any influence at this late stage and that requests for stakeholder participation are no more than purely ritual exercises in misleading public relations.

DSM 5 is clearly choosing to sacrifice meaningful stakeholder input in its mad scramble to meet an arbitrary publishing deadline. APA will most surely foist a second rate product on us. Its Vice Chair, Dr Regier, appears to be grasping at straws when he describes DSM 5 as a "living document," admitting that it offers incompletely tested "scientific hypotheses" but assuring us that these can always be patched, post publication.

This is entirely unacceptable. Patients and the public deserve much better -- we need a DSM 5 that can be trusted to be safe, scientifically sound and fit for purpose from the day it is published.

Dayle Jones, Ph.D. is chair of the task force monitoring DSM 5 for the American Counseling Association. She has become one of the most knowledgeable people on earth about DSM 5, and her views should carry particular weight with the American Psychiatric Association because the 120,000 licensed mental health counselors form one of the largest groups among DSM users. Dr. Jones has serious doubts that DSM 5 process can produce a credible and usable document. She writes:

The timetable for the DSM-5 field trials was unrealistic from the get go, deadlines were never met, and when time ran out, the most important part of the process was mysteriously cancelled. The DSM 5 academic/large clinic field trial was designed to have two phases. Phase 1 was originally scheduled to begin June 2009, but its start date had to be postponed for a year because the criteria sets were not ready, and then were postponed again and again and again (with no reasons given) -- so we enter 2012, with 90% of decisions made but still no reporting of field trial results.

And it gets much worse. Because it fell so far behind its own schedule, DSM 5 has abruptly dropped the second stage of field testing -- without public comment or justification. This was a catastrophic decision. Phase 2 was specifically designed to provide an opportunity for re-writing and retesting those diagnoses that failed Phase 1. Without Phase 2, poor quality diagnoses will necessarily be included in DSM 5. I believe strongly that DSM 5 should complete its field trials just as it was originally planned -- even if this means delaying publication.

The poor scientific foundation of the DSM 5 is of special concern because it will promote drastically increased prevalence rates, with over diagnoses leading to over treatment. In the absence of convincing data to support its radical changes, counselors may find themselves unable in good conscience to use DSM 5. We are guided by ethical standards that caution us against assessments that lack sufficient scientific foundation. Our ethical code also warns against the dangers of misdiagnosis and of pathologizing individuals or groups, as well as making a diagnosis that would cause harm to an individual.

If counselors distrust DSM 5 and believe that it is ethically questionable to use it, they can simply ignore it. DSM 5 is not mandatory for most clinicians, unless specifically required by their institutional settings. The International Classification of Diseases (ICD) meets all insurer-mandated and HIPAA coding requirements. If mental health professionals find that DSM 5 lacks credibility, they may choose to use the text and criteria of their DSM-IV's and turn to ICD-10-CM (available free online) for codes. Unless DSM 5 shapes up dramatically, I expect that many counselors and other mental health clinicians will wind up boycotting it.

Donna Rockwell, Psy.D. is a member of the group that organized a petition to reform DSM 5. Dr. Rockwell summarizes its purpose:

In October 2011, members of the Society for Humanistic Psychology, a division of the American Psychological Association, sent an Open Letter to the DSM 5 Task Force, asking for an independent scientific review of the most controversial and consequential DSM 5 suggestions. Posted online as a petition, this request has been signed by 11,000 mental health professionals and endorsed by 47 professional organizations representing hundreds of thousands of practitioners (included are the American Counseling Association, the British Psychological Society, 14 Divisions of the American Psychological Association, and the American Psychoanalytic Association). The petition expresses our alarm about the dangers of over diagnosis, over medication, and the lack of scientific foundation for so many of DSM 5's proposals.

The response from APA has been very disappointing. In a January 27, 2012 answer to our call for greater DSM-5 transparency and scientific rigor, its president, John Oldham, MD, wrote, "There is in fact no outside organization that has the capacity to replicate the range of expertise that DSM-5 has assembled over the past decade to review diagnostic criteria for mental disorders."

This misses the point. It is precisely the narrow range of DSM 5 expertise that stimulated our concern that it is insular, lacks scientific rigor, and is far out of touch with clinical reality. The controversial DSM 5 proposals need to be vetted independently and much more vigorously than they have been.

It seems that Dr. Oldham is unaware of the Cochrane Group, universally respected for its ability to conduct systematic and impartial reviews using the well-accepted standards of evidence-based medicine. The APA should contract with Cochrane to determine which of the DSM 5 suggestions can stand up to its scientific scrutiny. I can think of no other way to guarantee a scientifically sound and credible DSM 5. APA must also delay the publication of DSM 5 until it can produce a diagnostic manual that meets minimal standards of quality. This will require extensive rewriting of unreliable criteria sets and retesting them to ensure that they pass muster. As Dr. Jones suggests, DSM 5 must reverse its cancellation of Phase 2 of its field trial; this is a necessary fail-safe against including unreliable diagnostic criteria.

DSM 5 has two purposes -- public and private -- which (because of all the delays) are now placed in direct competition. Its public purpose is to provide an official classification of mental disorders that plays a crucial role in clinical communication, research, education, forensics, insurance reimbursement, disability determination, and FDA approval of drug indications. Its private purpose is to be a cash cow for the American Psychiatric Association -- a perennial bestseller of at least 100,000 copies a year, earning profits of at least $5 million a year. An APA that places its public trust first will delay publication of DSM 5 until it can be done right. An APA that protects profits first will prematurely rush a second- or third-rate product into print.

Let's see what happens.

Allen Frances is a professor emeritus at Duke University and was the chairman of the DSM-IV task force.

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