DSM5: The Debate Continues

NADA STOTLAND, MD, MPH, REFLECTS ON DSM-5

As an officer of the APA, I was one of the prime movers of the limitations on, and vetting of, potential participants in the preparation of the DSM5. It is no news that this was a controversial process. We were asked why this was necessary. We were warned that it would cost us the contributions of the major diagnostic experts, either because they would be indignant or because they wouldn’t be able to send their children to college if limited to $10,000 a year in pharmaceutical income. We were criticized because DSM-5 participants would be allowed to have any pharmaceutical income at all. We were reminded, and still are, that we could not control the future earnings of participants or control for the possible effects of previous earnings.

Despite the imperfections and the ongoing criticism, those limitations have stood us in good stead. Perhaps 15% of those invited refused because of the limitations, and some people who wanted to participate were not allowed to. There were plenty of excellent scholars willing and eligible. They have been at work for several years.

Subsequently, as an officer of the APA, apart from making sure that the Board has been kept up-to-date, I have maintained a "hands off" posture towards the DSM process. I am certain that there will be things I don’t like about the final product; it shouldn’t be 100% satisfactory to any one of us. However, its publication will raise the same concerns I expressed in my first blog posting. Some of our colleagues will probably loudly and publicly protest aspects of the new edition. How will that serve our field and our patients? 
 

ALLEN FRANCES, MD, RESPONDS:

I like and respect Dr Stotland and have enjoyed working with her in the past. I agree strongly with one half of her comments, but disagree strongly with the other half.

I agree strongly that APA has dealt responsibly with the conflict of interest problem -- with the result that the people selected to work on DSM-5 have the highest integrity. Indeed, we were negligent in not having a similar policy in place when we began work on DSM-IV in 1987. In those much more innocent, pre-Prozac days, the issue simply never occurred to any of us. Despite not having a formal policy, I don't think conflict of interest affected any of our decisions. We were careful to consider false positive risks and squelched almost all suggestions that would lead to increased diagnoses and new markets. The only call we made that clearly favored the drug companies was to include Bipolar II, and this was done only in response to evidence that these patients needed protection from the risks of switches and rapid cycling. In fact, some who argued most against this change were actually most involved in work with the companies that might have benefited from it. Nonetheless, it would have been better to have had a formal policy for DSM-IV and DSM-5 is to be congratulated for developing one.

The problem with the DSM-5 workgroups lies elsewhere. Certainly, they have suggested a number of poorly conceived new diagnoses and lowered thresholds that would greatly benefit drug companies (and bring harm to the false positive patients who would be misidentified). But their motives are pure. My discussions with some of the people involved, and prior work with them, makes me absolutely certain that the proposals arise from naivete about how the new diagnoses will be misused by drug companies to promote products, not by any desire (conscious or unconscious) to encourage this promotion.  

Which brings me to my strong disagreement with Dr Stotland-- concerning the propriety of her hands off attitude (and that of the rest of the APA Trustees). Most of the Trustees I have spoken to have not read the DSM-5 postings. Most know little or nothing about the issues involved in creating a diagnostic manual. None have taken seriously the concerns I have raised. An oversight committee, appointed late in the game and only under external pressure, has been surprisingly passive. DSM-5 has had virtually no APA monitoring and is about to embark on a disastrous $2.5 million field trial that has had no external review.

If I turn out to be correct, the prior poor DSM-5 performance (eg consistent delays, disorganization, impossible complexity, inscrutable writing, off the wall suggestions, lack of risk/benefit analysis etc) will lead to a delayed, defective, and remarkably expensive white elephant. But the real problem is that some of the suggestions, if incorporated into DSM-5, will be  extremely dangerous to the  mislabelled "patients" (especially those who will receive inappropriate antipsychotics) and that others would be forensic nightmares (see the Paraphilia section). I would not be embarked in this campaign of extensive public criticism of DSM-5 if the disagreements were trivial, if they weren't dangerous to patients, or if DSM-5 were self correcting. But the DSM-5 mistakes are not at all subtle or just matters of taste. They are obvious, hugely consequential to patients, and likely to have quite a destructive impact on the future of APA. 

In my view, the Trustee's hands off complacency has been a serious mistake that needs correcting now. The DSM-5 process would never have been so problematic had it received sufficient oversight in the past both within the APA and through a more open debate with the field. The current mistakes regarding the field trial design and inclusion of dangerous new diagnoses are not close call judgments that could go either way with no harm done to patients or to the APA. This is precisely the time, before it is too late, for the Trustees to take action. At the very least, they should direct the Oversight committee to appoint subcommittees to conduct an external review of the field trial design, a forensic review of all new proposals and wordings, and a risk/benefit analysis of new diagnoses and reduced thresholds.

DR STOTLAND'S REJOINDER

In response to Dr Frances' posting, let me clarify a few points:
 
I am and have been strongly in favor of vigorous debate during the development of DSM-5. I am not aware that any other professional association has posted a draft of a diagnostic system, as did the APA, to invite the widest possible array of views. Each Annual Meeting and Institute on Psychiatric Services has featured several presentations and open sessions for commentary. This is in addition to scholarly publications and presentations at other professional gatherings around the world. This unprecedented openness, including the exposure of a work in progress, allows each of us to identify and express potential pitfalls.

My concern is about taking these arguments to the general public. That would not be such a great concern were it not for the fact that no other class of disorders is already associated with such stigma, misunderstanding, and fear. No other medical specialty has an organized opposition dedicated, without exaggeration, to its destruction. The lay public is not equipped to understand the complexities of the DSM-5 process. They, and often we, as psychiatrists, have a strong tendency to forget that diagnoses in many other specialties are no more pure, clear, objective--"scientific"-- than those in psychiatry. There is no definitive test for migraine. No one can establish the precise point at which aberrant cells become a cancer. To take a case close to my heart, menopause is not a deficiency disease. I could go on and on. 
 
Bringing concerns to the APA Board and to the large group of individuals working on DSM-5 is salutary. In fact, I share some of Dr Frances' concerns and, as an individual, have brought them to the DSM-5 group. But, in the end, there will be a DSM5-- an official DSM-5. I have no doubt that no one will be completely satisfied with it. My extensive experience with the media, always eager for bad news, especially about psychiatry, leads me to believe that undermining the DSM-5 process publicly aids and abets our detractors and will lead to an unjustified erosion of already-shaky public confidence in our field, discouraging suffering individuals from seeking care and eroding the confidence and hope of patients already in treatment. I cannot identify a good reason for taking arguments about the DSM-5 process to the general public. 
 
There comes a point where a group assigned to do a challenging task has to be allowed to work on that task without substantive interference from the governance of its association. My decision not to interfere directly, as APA President, in the development of the DSM-5, does not reflect the attitude of the APA Board. The APA Trustees are represented on the DSM-5 Steering Committee. In response to the concerns expressed, they also set up a special group to oversee the process. I am not at all certain that disrupting the work entirely and starting over with new parameters and procedures would result in a better process or a better product.

DR FRANCES' PARTING COMMENT

There is one very powerful reason for taking the many serious problems with DSM-5 to the general public. My actions are the necessary result of the hands-off policy of the APA Trustess and of its Oversight Committee. I didn't want to be involved at all with DSM-5 and would gladly drop out now were the mistakes not so obvious and so consequential to patients and to the future of APA. The most recent example of all that is wrong with DSM-5 was the development a fatally flawed and hugely expensive field trial proposal with no consultation from  the field and no external review. It would feel irresponsible for me to let pass without public comment such continuing egregious mistakes.

If the Trustees and Oversight committee would only excercise their own responsibility for DSM-5, I could back off trying to steer them clear from what is likely to be a collossal mess for patients and for the APA. All I ask is the appointment of 3 review committees-- forensic, risk benefit, and field trials. The Trustees should do this as a form of insurance-- if I turn out to be exaggerating the problems, no harm done. But suppose I am right about the problems that will be caused unless DSM-5 is corrected (this is at least a reasonable bet), and suppose the APA governance structure remains as passive and ineffective as it has so far been? Then the public has a right to know the problems and I feel I have a responsibility to tell them. It is not yet too late to save DSM-5.