DSM-5 stirred great public and professional controversy because it was so carelessly done and included so many obvious mistakes. At the time, the American Psychiatric Association tried to appease critics with the promise that the errors not picked up before DSM-5 publication would promptly be corrected after. DSM-5 was advertised as a "living document", not written in stone and was to be subject to constant revision and updating.
Critics took little consolation in this promise that DSM-5 errors might eventually be corrected. With more time, clearer thinking, and competent text editing, the DSM-5 mistakes could and should have been identified and corrected before its publication. But APA was in an anxious rush to get DSM-5 to press, however rough its form. DSM-5 is a publishing cash cow necessary to balance the APA budget and has a captive audience of buyers that is not very sensitive to price or quality control.
It is now almost three years since DSM-5 was published; time enough to judge whether it is living up to the promise that it would be a self correcting, "living document." To its credit, APA did establish a mechanism to identify DSM-5 errors and to correct them. Its most important achievement so far has been cleaning up the criteria set for Autistic Spectrum Disorder, which in the original DSM-5 was completely uninterpretable. And a number of other minor errors have
also been fixed.
But the vast majority of DSM-5 mistakes and controversial decisions remain uncorrected. I had hoped to be done forever writing about DSM-5, but having lost confidence in its cumbersome correction process, will offer two suggestions. Each suggestion is directed at a different type of DSM-5 mistake. Mistakes due to the sloppy writing cry out for an immediate, thorough, and competent text editing. Mistakes about which diagnoses to include in DSM-5 and how to define them cry out for an independent external review of the supporting scientific evidence. Let's discuss each in turn.
The DSM-5 writing is so sloppy because its text editors lacked the experience to ensure that DSM-5 writing would have the necessary level of accuracy, clarity, and consistency. An experienced text editor appointed early in the DSM-5 process would have spotted and corrected its many writing mistakes and have produced a much cleaner DSM-5.
There is no reason in the world why the desperately needed text editing can't be done immediately to clean up all the inaccuracies and confusions that persist. Previously, I identified 19 writing errors picked up on a fairly casual reading of DSM-5. An experienced text editor assigned to the task would likely pick up and correct many dozens more.
I will highlight here just the two examples of bad DSM-5 writing that most require instant correction. I have picked the Paraphilia and Somatic Symptom Disorders sections because they are causing the most consequential real world problems. These mistakes are egregious, simple to correct, and would have been corrected before the publication of DSM-5, had it been subjected to proper text editing. The people now most responsible now for DSM-5 corrections readily admit that these are serious mistakes, but seem paralyzed by the cumbersome APA bureaucracy and the publishing priorities of the APA Press.
● Four consecutive DSM's, going all the way back to 1975, have repeatedly and resoundingly rejected the notion that rape is a mental disorder. An unfortunate mistake in the text of Paraphilia Disorders section undercuts this widely accepted consensus. The section is so sloppily written that 'expert' witnesses and prosecutors can incorrectly and misleadingly claim that rape becomes mental disorder if it has been repeated several times. This is pure nonsense- recidivist crime doesn't qualify as mental disorder just because it is recidivist. The mistake leads to the frequent abuse of psychiatric diagnosis in the judicial system to violate due process and constitutional protections against preventive detention. The federal government and 20 states have passed Sexually Violent Predator laws that allow involuntary psychiatric hospitalization (usually for life) of sexual criminals who have mental disorders predisposing them to their sex crimes. The Supreme Court, in narrow decisions, finds these laws constitutional, but only if the preventive detention is restricted to rapists who have a mental disorder. It is abhorrent that a badly written DSM section should facilitate the misdiagnosis of mental disorder in simple recidivist criminals, leading to a violation of their individual civil rights and perverting the integrity of our justice system. Correcting this would require no more than eliminating one paragraph from the Paraphilia text. So far the DSM-5 group has been unwilling or unable to do this, even though they know full well that the offending paragraph is dead wrong. I have no sympathy for rapists, but once they have served their long prison terms, they should not be locked up unjustly, perhaps for a lifetime, just because DSM-5 is badly written. DSM-5 should feel, but doesn't, great urgency in correcting a mistake that allows psychiatric abuse and legal injustice.
● The criteria set for Somatic Symptom Disorder is so loosely written that virtually anyone with a medical illness can be misidentified as mentally ill if they complain about their physical symptoms more than their doctor thinks they should. DSM-5 should have included clearer requirements that the patient's distress and dysfunction be far beyond the expectable given the medical problem and that all possible medical and psychiatric causes of distress had been definitively ruled out. Without these restrictions, it is far to easy for doctors to carelessly assume "it is all in the patient's head"; leading to an incomplete workup; and missing the underlying cause of the symptom. Correcting this egregious DSM-5 mistake is easy and just requires adding exclusionary criteria that have been standard throughout all DSM's, but had been ignored by this particular work group. The people responsible for correcting DSM-5 again know this is the right thing to do, but for reasons I can't understand, aren't doing it.
The second category of DSM-5 mistakes will take more work and fresh eyes to fix. These are the controversial decisions made by DSM-5 work groups to create new mental disorders or to loosen the criteria sets for existing ones. The DSM-5 process was ingrown and the product often reflected the biases of people working on it, rather than a balanced assessment of the scientific support and adequate concern about harmful unintended consequences. The literature reviews were of poor quality, far below widely accepted standards for inclusiveness, comprehensiveness, methodological rigor, and neutrality.
There is only one way now to guarantee the utility and credibility of the controversial decisions in DSM-5. APA should commission independent Cochrane (or Cochrane like) literature reviews to determine whether the existing evidence really supports them. I have explained elsewhere in more detail why such independent review is necessary and how it should be done.
Given the enormous revenue generated by DSM-5, the cost of commissioning independent external reviews would amount to no more than a rounding error in its publishing profits. The benefits to DSM-5 and APA credibility would be enormous. APA needs to make a reality (not just marketing gimmick) of its promise that DSM-5 would be a "living document".
Below are the DSM-5 decisions that most require an independent, external review to determine scientific validity, clinical utility, and harmful unintended consequences. The findings of the external reviews would be used to guide necessary revisions of DSM-5, allowing the risk/benefit analyses that should have been done well before DSM-5 was ever sent to print. The reviews should be widely available for comment once they are completed and should later be published in scientific journals. Open, independent reviews would provide the field with an opportunity to judge the quality of the evidence supporting DSM-5 decisions.
● DSM-5 greatly loosened the already loose DSM IV criteria for ADHD. This was done despite the fact that we are in the midst of an epidemic of increased ADHD diagnosis both in kids (15% by age 18) and in adults; the explosion in prescriptions of stimulant medication; and the thriving illegal market on college and high school campuses, where diverted ADHD drugs are sold for recreation and performance enhancement. Does the literature really support the DSM-5 loosening? Should the ADHD criteria set be tightened back to DSM IV levels or become even more restrictive? Should there be a black box warning in the ADHD section cautioning about over diagnosis and providing diagnostic tips on how to avoid it?
● The newly introduced DSM-5 diagnosis 'Binge Eating Disorder' has already been exploited as a Pharma marketing tool. A drug company launched a ubiquitous, disease mongering advertising campaign (featuring a former tennis champion) to misleadingly repackage its ADHD stimulant med as a treatment fir BED. If we have learned anything in the last 50 years, it is that stimulant diet pills don't work and cause problems. The leader of the work group that accepted BED as a new diagnosis has publicly expressed buyer's remorse at this abuse of the diagnostic system. Would an independent review of the research literature support the value of BED as an independent mental disorder?
● The DSM-5 confusion of normal grief with Major Depressive Disorder allows drug companies to market antidepressant pills for the bereaved as if they are experiencing clinical depression. The decision to eliminate the 'bereavement exclusion' never made any sense and needs to be reviewed again by unbiased people taking a fresh look at the literature and giving weight to the unintended consequences.
● The DSM-5 inclusion of Minor Neurocognitive Disorder confuses the normal memory loss of aging with early indications of dementia. This is encouraging an industry of fake screening tests for predementia, using unproven neuroimaging and cognitive instruments. Such premature screening is inaccurate and the high false positive rate encourages a variety of quack treatments. The risks and benefits of this inherently unreliable and easily abused new diagnosis need to be revisited.
● Was the DSM-5 inclusion of Disruptive Mood Dysregulation Disorder based on sufficient evidence and what evidence has been collected since on its performance characteristics? Is this new diagnosis being misused to contribute to the excessive, off-label use of antipsychotics in poor kids with behavioral problems?
DSM-5 has become (perhaps too) influential in many real world, consequential decisions relating to clinical practice, education, reimbursement, forensics, and drug company profits. It must reflect best available knowledge and avoid harmful unintended consequences. In its current form, DSM-5 most certainly fails on both counts.
And I have lost confidence that the current internal DSM-5 self-correction process will be any more self-correcting than was the flawed process that led, in the first place, to such a messy and controversial DSM-5. The people leading it are well meaning, well informed, and understand all the issues I am raising. The problem is that their efforts are far too little, far too late, and much too tied to the blundering APA bureaucracy and to the business priorities of the APA publishing house.
Nothing in APA's past or current performance inspires confidence that it will do the right things in correcting the DSM-5 mistakes. Clearly, the DSM franchise is too important to be left in the hands of a small guild of psychiatrists who treat it more like a publishing asset than a public trust.
In summary, two steps are required to restore the credibility of DSM-5 and ensure its accuracy, utility, and safety:
●an immediate and comprehensive text editing to correct the many and egregious writing errors;
● the commissioning of independent, external reviews of the scientific literature to determine which of the controversial DSM-5 decisions lack evidentiary support and require revision.
I invited a response from Dr Paul Appelbaum, Chair of APA's DSM Steering Committee, tasked with the responsibility for correcting DSM-5 errors. Here it is:
"Revising the DSM: Where Do We Stand?
Where does the process for making changes to DSM stand right now? As the chair of APA's DSM Steering Committee, I appreciate the opportunity to respond to Dr. Frances' comments, and to provide an update. Most important to convey is that APA has shifted the paradigm for how revisions will be made to DSM. In place of the periodic massive efforts that have characterized DSM revisions since the inception of the manual, going forward we will see continuous improvement of particular diagnostic categories, when and if supported by advances in the field. By pegging revision to scientific advances and requiring both explicit supportive data and a cost-benefit analysis of the proposed changes, the new process should discourage changes that are not well supported by evidence--a frequent criticism of DSM in the past.
In keeping with this approach, the Steering Committee has developed a set of criteria and procedures for reviewing proposals for changes. The full criteria will be posted on the DSM website in the coming months, but the essence is that proposals for revision of existing diagnoses will need to demonstrate that they would improve the validity of an existing diagnostic criteria set; increase reliability or clinical utility, without reducing validity; or substantially reduce deleterious consequences, without a reduction in validity. Proposals for new diagnoses would have to meet DSM criteria for a mental disorder; demonstrate validity and reliability; manifest clinical value; avoid overlap with existing diagnoses; and have a positive benefit/harm ratio. Criteria have also been created to judge proposals for deletion of existing diagnoses. When clear errors or ambiguities are demonstrated in the current criteria or text, a streamlined process will be in place to make corrections.
At the moment, we are in the midst of appointing the members of the five Review Committees, which will evaluate proposed changes in broad areas of psychiatric diagnosis. Simultaneously, we are designing the web portal that people can use to submit proposals for changes to DSM, and which will be used to post proposed revisions for public comment. Although no one person controls all aspects of the timeline, it is my hope to be ready to "go live" this spring with the web portal and the entire process in place.
There are many people who think that something in DSM-5 needs fixing. Some of them may be right. And not all of them agree on what should be changed or how those changes should be prioritized. That is precisely why we are setting up a process that allows thoughtful consideration of proposed changes. Were we to proceed in an ad hoc way to make decisions about the issues that Dr. Frances raises, he would be fully justified in criticizing us for making changes without clear criteria or procedures in place--as he criticized aspects of the DSM-5 process.
If this sounds like temporizing, it's not. In my view the DSM-5 process was hurt by the failure to set out clear criteria for changes and exact procedures for their consideration before the process began. That's not a mistake we want to repeat. We will make our own mistakes, but we would at least like to learn from those of our predecessors. As will be clear when the web portal opens, we're envisioning a data-driven process. This is critical as the incremental improvement in the scientific basis for the classification is our ultimate goal. Although I regret that Dr. Frances has lost confidence in this process even before it has begun, I am hoping that everyone else will be willing to judge us on our performance once we get underway."
Thank you, Dr Appelbaum.
I have great respect for Dr Appelbaum, but little confidence in his DSM-5 corrections process. His response is non-responsive to my two suggestions. 1) The many DSM-5 writing errors and inconsistencies don't need any empirical review and shouldn't be subjected to any lengthy postponement. They are simple mistakes that can be cleaned up readily with careful text editing. Of course, this should have been done before DSM-5 was ever sent to press, but better late than never. And there is no excuse to allow even more damage to be done while waiting for Dr Appelbaum's lengthy review process. 2) Judgements about the validity, utility, and risks of the controversial DSM-5 decisions should rely on external, independent reviews of the empirical data, done by people outside of APA who have special expertise in the rigorous methods of empirical review. Dr Appelbaum's corrections process is almost identical to the failed DSM-5 review methods that caused such bad decision making in the first place and it will almost certainly fail in similar ways. We need a reviews done with fresh and neutral eyes, unwedded to DSM-5 biases or to APA finances.
Allen Frances is a professor emeritus at Duke University and was the chairman of the DSM-IV task force.