By Allen Frances, MD
The DSM-5 Scientific Review Group was the last hope for an eleventh hour DSM-5 save. This hope recently died. Its first decision makes clear that the group will be no more than an easy rubber stamp willing to approve even the worst ideas dreamed up by the DSM-5 work groups. Its quick acceptance of Disruptive Mood Dysregulation Disorder (DMDD, also known as Temper Dysregulation) shows that just about anything can make it through this sham review process. Watch out for yet another fad sparked by child psychiatry.
A brief update may be in order for those of you not fully up to speed on the arcana of DSM-5 organizational functioning. The appointment of the DSM-5 scientific review group was a belated response to criticisms that many of the DSM-5 proposals did not have a reasoned rationale or deep scientific support; were reckless and radical; and would trigger diagnostic inflation and excessive use of medication.
Had it lived up to its name, the scientific review group could have ensured a safe and usable DSM-5. Initially, there was cause to be reasonably optimistic that it might serve as filter at least for the worst DSM-5 proposals. The group consisted of highly respected, experienced, and competent individuals who might be expected to hold DSM-5 to an appropriately high standard. But from its very beginning, there were also three reasons to worry that the review would be more spin than science:
1) Confidential Reporting: The review group was instructed to report confidentially only to the APA Board of Trustees. A wall of secrecy is inherently incompatible with the spirit of scientific review. All science worthy of the name should be open, transparent, and subject to the most thorough peer review from the widest of sources.
2) Independence: A scientific review group should always be independent of the science it is reviewing. How puzzling then that the Chair of the DSM-5 scientific review group had also served as a DSM-5 Task Force member and has previously staked out strong positions defending DSM-5. Interesting also that the only researcher ever to have studied DMDD also happens to sit on both the scientific review group and the child disorders work group (although she did recuse herself on the DMDD approval). The other members are less immediately involved in DSM-5, but are loyal APA soldiers, not at all independent of pressures coming from the byzantine APA political process and from its financial needs. The DSM-5 proposals should have received a completely unbiased, multidisciplinary, and truly independent review—they didn’t.
3) Lack of Evidenced Based Methods: There are well developed standards for evaluating scientific evidence and applying it to medical decision making. We may never know the secret rituals that have informed the deliberations of the DSM-5 scientific review group, but we can be sure from its approval of DMDD that these had no resemblance to state of the art scientific review.
The scientific review group’s first action was to issue a blank check that will allow child psychiatry to start another diagnostic fad. Child psychiatry has been on a reckless binge of overdiagnosis with no fewer than three false ‘epidemics’ to its credit—childhood bipolar, attention deficit, and autism. Unchastened, the field now offers up DMDD as a new and completely untested diagnosis—and amazingly enough, the scientific review group has swallowed it whole.
There is virtually no research on DMDD—it has been studied by only one group and for only six years. We don’t know how high will be its rate in the bustle of primary care, its proportion of misdiagnosed false positives, its natural course and response to treatment, even its optimal definition. We can make only one safe prediction—DMDD will almost surely increase the already outrageous overdiagnosis of mental disorder in kids and the consequent overprescription of dangerous antipsychotic drugs.
Everyone (even the scientific work group and the child work group) must have known that DMDD is a made up and unstudied diagnosis with no real scientific support. The review group probably bought the child group’s argument that DMDD is a lesser evil replacement for childhood bipolar disorder—less stigmatizing and less likely to result in reflex long term antipsychotic use. But their proposed fix is a disaster in the making that will most likely make an already bad situation much worse.
DMDD will capture a wildly heterogeneous and diagnostically meaningless grab bag of difficult to handle kids. Some will be temperamental and irritable, but essentially normal and just going through a developmental stage they will eventually outgrow without a stigmatizing diagnosis and a harmful treatment. Others will have conduct or oppositional problems that gain nothing by being mislabeled as mood disorder. Yet others will have serious, but not yet clearly defined psychiatric disorders that require careful and patient monitoring before an accurate diagnosis can be made.
Difficult kids suffer and cause much suffering to parents, sibs, teachers, and other kids. Everyone feels great and understandable pressure to do something. Eager clinicians and worried parents seek a label and a treatment—even in situations where it is not yet possible to make an accurate diagnosis or deliver a safe and effective treatment. Making an imprecise diagnosis and giving a risky treatment is not a reasonable solution to the troubles caused by troubled kids.
Too often prescribing a pill follows all too quickly and mindlessly after the (mis)labeling of the ill. And too often the pill is an antipsychotic with all its risks of huge weight gain and dire complications. Amazingly, the newer antipsychotics have already stretched their off label usage to become the number one revenue producing class of drugs in the United States—raking in $15 billion per year. The inclusion of DMDD in DSM-5 will most likely add further to the overuse of antipsychotics in kids, not solve it.
It is a great puzzle that any group charged with responsibility for conducting a scientific review would take on blind faith the scientifically unsupported suggestions of the child psychiatrists—the very group who initially got us into this mess with their seemingly insatiable propensity for overdiagnosis.
So what can be done to reduce the overdiagnosis of childhood bipolar disorder? There are three steps that are much safer and more effective than adding DMDD. First, do no harm. Don’t propagate new fads in a futile attempt to end old fads. Second, include a prominent black box warning in DSM-5 about the overdiagnosis of childhood bipolar disorder and its potentially dire consequences. Third, the APA and the various psychiatric, psychologic, and counseling groups concerned with pediatric mental health should sponsor conferences for clinicians, parents, and teachers on the difficulties in definitively diagnosing youngsters, the need for caution, the value of accurate diagnosis, but also the risks of overdiagnosis and of overtreatment. The childhood bipolar fad needs to be attacked head on, not by adding a fake new diagnosis likely to start its own foolish fad.
The general lesson to be learned is clear—never have the fox guard the henhouse. The DSM-5 experts who are suggesting untested psychiatric diagnoses are too close to their pet proposals to be objective about them. The scientific review group is too close to the DSM-5 leadership and the APA institutional goals to provide anything resembling the needed independent review. The DSM-5 momentum towards unexpected consequences appears to be inexorable. Only mounting pressure on APA from outside groups can brake this runaway train.
1 in 66 Americans is a Diagnosed Psychotic, By Robert Johnson, Information Clearing House.