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DSM-5: Living Document or Dead on Arrival?

By Allen Frances, MD | November 11, 2011

News flash From Medscape Medical News—“APA Answers DSM-5 Critics”—a defense of DSM-5 offered by Darrel A. Regier, MD, vice-chair of the DSM-5 Task Force. Wonderful news that the American Psychiatric Association (APA) is attempting to address the fact that DSM-5 alarms many of its potential users—it is long past time for an open dialog.

Unfortunately, however, Dr Regier dodges the concerns that must be addressed if DSM-5 is to become a safe and credible document. Five simple questions were previously posed to APA with a request for straight answers:

1) Why is APA not willing to have an independent scientific review of questionable DSM-5 proposals—especially since its own internal and confidential review process has been so badly discredited?

2) Since the DSM-5 suggestions will all broaden the definition of mental disorder, why should we not worry about diagnostic inflation and the massive mislabeling of normal people as mentally ill?

3) Won’t this diagnostic inflation exacerbate the already rampant over-prescription of psychotropic medications (especially by primary care doctors, especially antipsychotics, especially to kids)?

4) Why should we not worry about the unintended forensic complications of a sloppily written DSM-5 containing suggestions that are obvious targets for forensic misuse?

5) Won’t the many small, needless, and arbitrary changes in DSM-5 complicate future research efforts and make impossible the interpretation of data collected before versus after DSM-5?

None of the questions gets anything approaching an answer. Instead, Dr Regier tells us, “We hear your concerns and are aware of those from others in the mental health field, and take them under serious consideration in our deliberations.” But if APA really heard our concerns, there would be an immediate independent scientific review to allay them. What possible excuse is there for not taking the one obvious step that will make DSM-5 credible?

Dr Regier assures us not to worry about the radical DSM-5 suggestions, promising “a rigorous test-retest design to assess the reliability and clinical utility of proposed criteria . . . in 11 academic field trial centers.” He adds, “The full range of disorders will be assessed in this field trial and the findings will contribute to the final decisions about the diagnoses.”

But, simply stated, the field trials are useless for DSM-5 decision-making. They failed to ask and therefore cannot begin to answer the only really important question—is DSM-5 so overly inclusive that it will mislabel as mentally ill millions of people with problems that are just part of the human condition. And experience teaches us that results generated in academic centers often have nothing at all to do with how DSM is actually used (and often misused) in the real world.

Dr Regier goes on to admit the obvious—that the new DSM-5 proposals are not based on anything resembling adequate research: “However, a lot of this has not been tested as well as we would like.” “Some of these fixes are not as well studied as others and we recognize that. But we can’t move forward without some of these put into practice. So we think this is a much more testable set of scientific hypotheses.” “And that’s what the DSM is—a set of scientific hypotheses that are intended to be tested and disproved if the evidence isn’t found to support them.”

There could not be more eloquent testimony to exactly where DSM-5 has gone badly and dangerously off the tracks. DSM-5 most definitely should not harbor the ambition of providing a set of scientific hypotheses created by and for researchers to encourage further testing of their pet ideas. DSM-5 is not at all meant to be a program for future research—it is instead a guide to current clinical practice that will have a crucial impact on the lives of the people misdiagnosed by the DSM-5 hypotheses. They will often be hurt—sometimes badly hurt—by receiving unnecessary medicine and unnecessary stigma.

Recent experience proves that children will be particularly vulnerable to the mislabeling that will follow this exercise in DSM-5 “hypotheses testing,” to say nothing of the misallocation of resources away from the truly ill (who desperately need them) and toward the worried well (who often will be more harmed than helped). There is no conceivable excuse for conducting what amounts to an uncontrolled public health experiment just so the DSM-5 researchers can further the testing of their pet ideas.

Dr Regier is fond of calling DSM-5 a “living document that can be revised regularly.” He states, “We’re thinking of having a DSM-5.1, DSM-5.2, etc.” The implication of this “living document” concept is chillingly out of touch with the perils of clinical reality. Although he doesn’t come right out and say it, Dr Regier seems to be reassuring us with something like, “Don’t you worry if our untested hypotheses get it wrong now, we can always fix it up later.” This blithely ignores the needless and sometimes dangerous medication side effects and stigma to be endured by those who are mislabeled by the premature and untested DSM-5 hypotheses. The makers of DSM-5 have forgotten the most important injunction in medicine—the Hippocratic First Do No Harm.

What needs to be done? In the short term, APA has only 2 choices—submit DSM-5 to external review or drop the most dangerous suggestions. Otherwise DSM-5 risks not being trusted and not being used by mental health clinicians.

For the future, the lesson couldn’t be clearer—never again allow researchers the freedom to turn DSM into a plaything for their pet “hypotheses.” The DSM’s are not meant to be a casually undertaken experiment. They have become far too important an influence on clinical practice and public health policy. DSM-5’s radical ambitions have failed—it attempted to fly too high and now must come back to earth.

If you agree that the APA defense of DSM-5 is much more troubling than reassuring, consider signing the petition requesting reform at http://www.ipetitions.com/petition/dsm5/.

The interview with Dr Regier is available at http://www.medscape.com/viewarticle/753255.

 

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by David Whittaker | December 08, 2011 9:39 PM EST

If what I hear about the DSM V is true I think I'll stick with the DSM IV TR and start a boycott the DSM V movement something akin to the occupy wall street. Everybody is welcome to join. I think the DSM updates are a money driven enterprise whenever the APA needs cash they either revise or publish a new edition. It is a racket.

by Steve Moffic | November 15, 2011 10:39 AM EST

I also join Dr. Pies in suggesting a pause for some further reflection. For instance, there may be some other issues worth focusing on besides the new diagnostic criteria. One of them is who will be deemed appropriate to make official DSM 5 diagnoses. Will it still be any clinician of any discipline who decides that they themselves have the requisite expertise? Should it only be psychiatrists? Or only psychiatirsts and Ph.D psychologists? This is a crucial decision because whatever the criteria are, the diagnostician needs enough skill and expertise to use them appropriately.

We do own Dr. Francis a great deal of gratitude, for I think without his passionate focus on getting this right, we might have been ready to be saddled with a manual with major flaws that would harm patients more than necessary. Why he wasn't more formally incorporated into the process was likely a major mistake.

As to who else should be involved with review process, how about some master clinicians? Won't they be most likely to appreciate the real-live effects of these new revisions?

by Ronald Pies | November 11, 2011 9:25 PM EST

Our colleague Dr. Frances has now provided Psychiatric Times readers with (by my count)
eight blogs on DSM-5 in 18 days--on average, a new blog every 2.25 days, which may be a
Times record! He has done the profession a service by raising important and troubling
questions regarding the DSM-5 process and proposals. While many of us share Dr.
Frances's frustration at the quite limited response from the DSM-5 leadership, I also hope that
my friend Al will now pull back a bit, and allow Psychiatric Times readers sufficient time to consider
and respond to his numerous, withering critiques. I also hope that he will carefully consider the responses
he receives, and engage in a collegial dialogue with those presenting a different point of view.

On a personal note, I fully agree with Dr. Frances's call for a an objective, external
review of the DSM-5 process and proposals. Ideally, a "blue-ribbon"panel under the
aegis of the National Science Foundation would provide this sort of oversight and
consultation to the DSM-5 leadership. This should be done with all deliberate speed.
In my view, such independent review would would greatly enhance the credibility of the
DSM-5, even if it means another delay in its release.

On the other hand, I do think there is something to be said in favor of the "living document" idea
proposed by Dr. Regier. To be clear: I would not apply this model to the DSM-5 diagnostic criteria
themselves, which ought to reflect the best available science and remain "stable" until new evidence accumulates over a period of many years--in general, a period of 15-20 years might be a very rough guide.

However, the ancillary text of the DSM-5 could be updated every 3-5 years or so, as new evidence accrues
with respect to the biological, psychological, and socio-cultural factors involved in a given disorder. Even such text revisions, however, ought to be carried out with great care, and only after sufficient replication and
validation of the supporting evidence. This process, too, would benefit from independent, expert review.

Finally, nobody knows better than Dr. Frances that a major overhaul of our diagnostic
system is a difficult, frustrating, and complex task--one that, in the end, will completely satisfy no one
and will likely dissatisfy nearly everyone. Yes, our DSM-5 colleagues deserve our constructive criticism--
but they also deserve our respect and support for what is often a thankless task. Nonetheless, I agree with
Dr. Frances that the DSM-5 leadership owes our profession a detailed and substantive response to the criticisms that have been put forward by Dr. Frances and many others.

Respectfully,
Ronald Pies MD
Editor-in-Chief Emeritus

[The above represents solely my personal views, not the official position of Psychiatric Times or its editors]






 
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