Sigh of relief. The DSM-5 website announced this morning that two of its most controversial proposals have finally been dropped. We have dodged bullets on Psychosis Risk and Mixed Anxiety Depression. Both are now definitively rejected as official DSM-5 diagnoses and instead are being exiled to the appendix. And one other piece of good news-the criteria set for Attention Deficit/Hyperactivity Disorder has been tightened (not enough, but every little bit helps).
The world is a safer place now that “Psychosis Risk” will not be in DSM-5. Its rejection saves our kids from the risk of unnecessary exposure to antipsychotic drugs (with their side effects of obesity, diabetes, cardiovascular problems, and shortened life expectancy). “Psychosis Risk” was the single worst DSM-5 proposal -- we should all be grateful that DSM-5 has finally come to its senses in dropping it.
For the first time in its history, DSM-5 has shown some flexibility and capacity to correct itself. Hopefully, this is just the beginning of what will turn out to be a number of other necessary DSM-5 retreats. Today's revisions should be just the first step in a systematic program of reform -- a prelude to all the other changes needed before DSM-5 can become a safe and scientifically sound document.
The turnabout here can be attributed to the combination of: 1) extensive criticism from experts in the field; 2) public outrage; 3) uniformly negative press coverage; and, 4) the abysmal results in DSM-5 field testing. The same factors working together should deep six many of the other risky DSM-5 proposals. This is certainly no time for complacency. Much of the rest of DSM-5 is still a mess. The reliabilities achieved for many of the other disorders are apparently unbelievably low and the writing of the criteria sets is still unacceptably imprecise. The following specific issues need to be addressed.
1) Why introduce Disruptive Mood Dysregulation Disorder when it has been studied by only one research team for only six years and risks further encouraging the inappropriate use of antipsychotic drugs for kids with temper tantrums?
2) Why have a diagnosis for Minor Neurocognitive Disorder that will unnecessarily frighten many people who have no more than the memory problems of old age?
3) Why insist on removing the Bereavement exclusion- thus allowing the inappropriate diagnosis of Major Depressive Disorder in people who are experiencing normal grief?
4) Why open the floodgates to even more over-diagnosis and over-medication of Attention Deficit Disorder (by raising the allowed age of onset to 12)?
5) Why dramatically lower the threshold for Generalized Anxiety Disorder when this will confound mental disorder with the anxiety and sadness of everyday life?
6) Why combine substance abuse with substance dependence under the rubric of Addictive Disorders- when this confuses their different treatment needs and creates unnecessary stigma for many young people who will never go on to addiction?
7) Why include a category for Behavioral Addictions that will open the door to the mislabeling as mental disorder all sorts of normal interests and passions? The DSM-5 suggestion to include Internet addiction in the Appendix is an ominous first step.
8) Why include wording in the Pedophilia criteria set that will invite further forensic abuse of the already much misused Paraphilia section?
9) Why label as mental disorder the experience of indulging in one binge-eating episode a week for three months?
10) Why introduce a system of personality diagnosis so complicated it will never be used and will give dimensional diagnosis an undeserved bad name?
11) Why not delay publication of DSM-5 to allow enough time to complete the previously planned and crucial second stage of field testing that was abruptly cancelled because of the constant administrative delays in completing the first stage? This is the only way to guarantee acceptable reliability. We should not accept ambiguously worded DSM-5 diagnoses whose reliability barely exceeds chance?
12) And most fundamental. Why not allow for an independent scientific review of all the remaining controversial DSM-5 changes. This has been proposed by fifty-one mental health organizations as the only way to guarantee a credible DSM-5?
The public has 6 weeks to comment on the current DSM-5 suggestions. Then there will be a round of final decisions- with everything probably sewn up by mid-fall. This opening chink in the previously impervious DSM-5 armor should spur renewed efforts to get the rest of DSM-5 right.
Up until now, the leadership of the American Psychiatric Association has stubbornly defended the indefensible DSM 5 proposal that would turn normal grief into clinical depression. APA has blithely ignored the contrary scientific evidence; the unified opposition of 47 professional organizations; 2 eloquent editorials in the Lancet; and critical articles in more than 100 newspapers from all around the world. The meager counter-arguments offered by the APA and DSM 5 leadership reveal how badly they have lost touch with clinical common sense, with the larger community of mental health professionals, and with the general public.
Recently, Dr. Joanne Cacciatore wrote a moving blog opposing the DSM 5 plan. Within days, she had unexpectedly attracted more than 100,000 viewers. Encouraged by the display of overwhelming support, Dr. Cacciatore has now written a powerful letter to the APA Trustees demanding that they take immediate action to protect normal grief from inappropriate DSM 5 medicalization.
I think her letter could be the crucial turning point in the development of DSM 5. If the APA Trustees respond to it positively and finally exert appropriate governance of DSM 5 on this one point, they may feel empowered to review and revise other equally reckless DSM 5 proposals. If, instead, the Trustees again fall meekly into line backing this hopelessly foolish proposal, it is unlikely that DSM 5 will ever be a safe or scientifically sound system of psychiatric diagnosis.
Here is Dr. Cacciatore's letter:
"Open Letter to the Board of Trustees of the American Psychiatric Association and to the DSM 5 Task Force"
"Two weeks ago, I wrote a blog opposing the DSM 5's proposal to reduce the DSM IV bereavement exclusion."
"This blog has since gone viral in the most incredible way- 100,000 readers within its first few weeks. It seems that this proposal is experienced as an outrageous insult by the very people it is intended to help."
"I have more than sixteen years experience dealing with tens of thousands of grieving people whose children die or are dying at any age and from any cause. To my knowledge, there is no empirical standing for the arbitrary two-week time frame, and thus this proposal not only contradicts good common sense but also rests on weak scientific evidence."
"One thing in which the literature is clear: long-term psychological distress is common in this population and other populations suffering traumatic deaths. In my experience both as a researcher and clinician in the field and also as a bereaved parent, the DSM 5 proposal is radical, unnecessary, challenges what it means to be human, and for some may be dangerous."
"Those with severe depressive symptoms distinguishable from normal grief can already be diagnosed as soon as is needed using the DSM IV criteria. In contrast, DSM 5 would require a distinction between normal grief and mild depression shortly after the death of a loved one that is often impossible to discern for even the most experienced clinicians. The DSM 5 may well create problematic false positives- and thus cause further harm, to an already vulnerable population. There are many more reasons we oppose these changes, many of which are outlined in my blog".
"Our international organization (MISS Foundation) has 77 chapters around the world and has helped countless grieving families and the professionals who serve them. All our services are free and we are a volunteer-based organization. Our website gets more than one million hits per month and we have 27 online support groups. We oppose this change with our minds, with our hearts, and with our numbers."
"I speak on behalf of the MISS Foundation's grieving families: Should the DSM 5 stubbornly ignore the evidence and the mounting professional and public opposition, our last alternative will be to call for more direct action- in the short term, our organization will rally the support of Congressional leaders; in the longer term, we will have no choice but to join a concerted boycott against the use of the DSM 5 in treating bereaved families facing the death of a child".
"Process transparency is also important. Please respond promptly with an indication of the next steps and timetable in the APA review process; what is the organizational table for making this decision; on what grounds will it be made; when will it be announced; and, is there an appeal process?"
"On behalf of hundreds of thousands of bereaved people around the world, I implore you to reverse this poorly conceived and unnecessary decision. My more than 100,000 readers and I hope to hear from you soon."
Thank you, Dr. Cacciatore. Heretofore, the APA leadership has provided no direction, creating a vacuum that allowed DSM 5 full freedom to chart its risky course. But expertise can come from many and unexpected quarters- in this case it arrives in the surprising form of a spontaneous outpouring from 100,000 people who understand the topic of bereavement from the inside. The DSM 5 grief proposal was never needed, doesn't make sense, is gratuitously off-putting, and has placed psychiatry in the worst possible light. APA's misguided defense of it simply has no traction and has already dealt an unnecessary blow to the credibility of psychiatry.
Dr. Cacciatore's well reasoned letter is a clear (and perhaps final) wake up call to the APA Trustees. It is long past time for them to do some reality testing and also to show some gumption and responsible governance. Psychiatry is an essential and wonderful profession that deserves much better leadership than it has so far received throughout the DSM 5 fiasco. It has come down to a now or never moment for the leaders of APA to finally come to plate and curb obvious DSM 5 excess. They should not force those seeking a safe DSM 5 to the extremes of political action or boycott. This is the turning point for the APA leadership- perhaps its last chance to set DSM 5 right.
Up until now, the leadership of the American Psychiatric Association has stubbornly defended the indefensible DSM-5 proposal that would turn normal grief into clinical depression. APA has blithely ignored the contrary scientific evidence; the unified opposition of 47 professional organizations; two eloquent editorials in the Lancet; and critical articles in more than 100 newspapers from all around the world. The meager counter-arguments offered by the APA and DSM-5 leadership reveal how badly they have lost touch with clinical common sense, with the larger community of mental health professionals, and with the general public.
Recently, Dr. Joanne Cacciatore wrote a moving blog opposing the DSM-5 plan. Within days, she had unexpectedly attracted more than 100,000 viewers. Encouraged by the display of overwhelming support, Dr. Cacciatore has now written a powerful letter to the APA Trustees demanding that they take immediate action to protect normal grief from inappropriate DSM-5 medicalization.
I think her letter could be the crucial turning point in the development of DSM-5. If the APA Trustees respond to it positively and finally exert appropriate governance of DSM-5 on this one point, they may feel empowered to review and revise other equally reckless DSM-5 proposals. If, instead, the Trustees again fall meekly into line backing this hopelessly foolish proposal, it is unlikely that DSM-5 will ever be a safe or scientifically sound system of psychiatric diagnosis.
Here is Dr Cacciatore’s letter:
“Open Letter to the Board of Trustees of the American Psychiatric Association and to the DSM-5 Task Force”
“Two weeks ago, I wrote a blog opposing the DSM-5’s proposal to reduce the DSM IV bereavement exclusion.”
“This blog has since gone viral in the most incredible way -- 100,000 readers within its first few weeks. It seems that this proposal is experienced as an outrageous insult by the very people it is intended to help.”
“I have more than sixteen years experience dealing with tens of thousands of grieving people whose children die or are dying at any age and from any cause. To my knowledge, there is no empirical standing for the arbitrary two-week time frame, and thus this proposal not only contradicts good common sense but also rests on weak scientific evidence.”
“One thing in which the literature is clear: long-term psychological distress is common in this population and other populations suffering traumatic deaths. In my experience both as a researcher and clinician in the field and also as a bereaved parent, the DSM-5 proposal is radical, unnecessary, challenges what it means to be human, and for some may be dangerous.”
“Those with severe depressive symptoms distinguishable from normal grief can already be diagnosed as soon as is needed using the DSM-IV criteria. In contrast, DSM-5 would require a distinction between normal grief and mild depression shortly after the death of a loved one that is often impossible to discern for even the most experienced clinicians. The DSM-5 may well create problematic false positives -- and thus cause further harm, to an already vulnerable population. There are many more reasons we oppose these changes, many of which are outlined in my blog”.
“Our international organization (MISS Foundation) has 77 chapters around the world and has helped countless grieving families and the professionals who serve them. All our services are free and we are a volunteer-based organization. Our website gets more than one million hits per month and we have 27 online support groups. We oppose this change with our minds, with our hearts, and with our numbers.”
“I speak on behalf of the MISS Foundation’s grieving families: Should the DSM-5 stubbornly ignore the evidence and the mounting professional and public opposition, our last alternative will be to call for more direct action- in the short term, our organization will rally the support of Congressional leaders; in the longer term, we will have no choice but to join a concerted boycott against the use of the DSM-5 in treating bereaved families facing the death of a child”.
“Process transparency is also important. Please respond promptly with an indication of the next steps and timetable in the APA review process; what is the organizational table for making this decision; on what grounds will it be made; when will it be announced; and, is there an appeal process?”
“On behalf of hundreds of thousands of bereaved people around the world, I implore you to reverse this poorly conceived and unnecessary decision. My more than 100,000 readers and I hope to hear from you soon.”
Thank you, Dr. Cacciatore. Heretofore, the APA leadership has provided no direction, creating a vacuum that allowed DSM-5 full freedom to chart its risky course. But expertise can come from many and unexpected quarters -- in this case it arrives in the surprising form of a spontaneous outpouring from 100,000 people who understand the topic of bereavement from the inside. The DSM-5 grief proposal was never needed, doesn’t make sense, is gratuitously off-putting, and has placed psychiatry in the worst possible light. APA’s misguided defense of it simply has no traction and has already dealt an unnecessary blow to the credibility of psychiatry.
Dr. Cacciatore’s well-reasoned letter is a clear (and perhaps final) wake-up call to the APA Trustees. It is long past time for them to do some reality testing and also to show some gumption and responsible governance. Psychiatry is an essential and wonderful profession that deserves much better leadership than it has so far received throughout the fiasco. It has come down to a now-or-never moment for the leaders of APA to finally come to the plate and curb obvious DSM-5 excess. They should not force those seeking a safe DSM-5 to the extremes of political action or boycott. This is the turning point for the APA leadership -- perhaps its last chance to set DSM-5 right.
According to this week's Time magazine, the American Psychiatric Association has just recruited a new public relations spokesman who previously worked at the Department of Defense. This is an appropriate choice for an association that substitutes a fortress mentality and warrior bluster for substantive discussion. The article quotes him as saying: "Frances is a 'dangerous' man trying to undermine an earnest academic endeavor." Fresh from DOD, it may be difficult for the new spokesman to leave behind combat cliches and perhaps he is not the best judge of academic endeavors. He enthusiastically extends the APA policy of shooting the messenger because it can't argue the message. Who knows- I may have become a picture card in his deck of high value targets.
In fact, my criticisms of DSM 5 arise precisely from its obvious failure to be an impartial, meticulous, and consensus academic endeavor. DSM 5 has suffered from a fatal combination of excessive ambition, sloppy method, and closed process. It fully deserves the concerted opposition it has generated from forty-seven professional organizations, the world press, the Society of Biological Psychiatry, the Lancet, and the general public. It has pretty much come down to DSM 5 against the world- not just me.
The piece in Time magazine manages to raise again the silly APA suggestion that my objections to DSM 5 are motivated by a feared loss of royalties. Let's set the record straight- hopefully for the last time. The royalties on my DSM IV handbook are about $10,000 a year- not at all commensurate with all the time I have spent trying to protect DSM 5 from making all its repeated mistakes.
My motivation for taking on this unpleasant task is simple- to prevent DSM 5 from promoting a general diagnostic inflation that will result in the mislabeling of millions of people as mentally disordered. Tagging someone with an inaccurate mental disorder diagnosis often results in unnecessary treatment with medications that can have very harmful side effects. I entered the DSM 5 controversy only because I had learned painful lessons working on the previous three DSM's, seeing how they can be misused with serious unintended consequences. It felt irresponsible to stay on the sidelines and not point out the obvious and substantial risks posed by the DSM 5 proposals.
I don't consider myself a dangerous man except insofar as I am raising questions that seem dangerous to DSM 5 because there are no convincing answers. My often repeated challenge to APA- provide us with some straightforward answers to these twelve simple questions:
1) Why insist on allowing the diagnosis of Major Depressive Disorder after only two weeks of symptoms that are completely compatible with normal grief?
2) Why open the floodgates to even more over-diagnosis and over-medication of Attention Deficit Disorder when its rates have already tripled in just fifteen years?
3) Why include a psychosis risk diagnosis which has been rejected as premature by most leading researchers in the field because it risks exacerbating what is already the shameful off-label overuse of antipsychotic drugs in children?
4) Why introduce Disruptive Mood Dysregulation Disorder when it has been studied by only one research team for only six years and risks encouraging the inappropriate antipsychotic drug prescription for kids with temper tantrums?
5) Why sneak in Hebephilia under the banner of Pedophilia when this will create a nightmare in forensic psychiatry?
6) Why lower the threshold for Generalized Anxiety Disorder and introduce Mixed Anxiety Depression when both of these changes will confound mental disorder with the anxieties and sadnesses of everyday life?
7) Why have a diagnosis for Minor Neurocognitive Disorder that will unnecessarily frighten many people who have no more than the memory problems of old age?
8) Why label the experience of indulging in one binge eating episode a week for three months as a mental disorder ?
9) Why introduce a system of personality diagnosis so complicated it will never be used and will give dimensional diagnosis an undeserved bad name?
10) Why not delay publication of DSM 5 to allow enough time to complete the previously planned and crucial second stage of field testing that was abruptly cancelled because of the constant administrative delays in completing the first stage?
11) Why should we accept ambiguously worded DSM 5 diagnoses whose reliability barely exceeds chance?
12) And most fundamental. Why not allow for an independent scientific review of all the controversial DSM 5 changes identified above- proposed by forty-seven mental health organizations as the only way to guarantee a credible DSM 5? What is there to hide and what harm is done by additional careful review?
If I am a dangerous man, it is because I am exposing DSM 5's carelessness and thus putting at risk APA's substantial publishing profits. During the past three years, I have made numerous attempts, private and public, to warn the APA leadership of the troubles that lay ahead and to implore them to regain control of what was clearly a runaway DSM 5 process. This has had no real effect other than delaying publication of DSM 5 for a year and the appointment of an over-sight committee that turned out to be toothless. I am reduced now to just one means of protecting patients, families, and the larger society from the recklessness of the DSM 5 proposals- repeatedly pointing out their risks in as many forums as possible.
Previous APA responses to criticism provide the bland and unsatisfying reassurance that we should trust DSM 5 on faith, because it has been prepared by experts who have toiled long and hard. This simply won't wash- this emperor really has no clothes. It is long past time for DSM 5 to abandon phoney attempts at public relations and instead allow itself to be subjected to a rigorous independent scientific review. We need a safe and scientifically sound DSM 5- not a third rate product that is universally opposed and lacks all credibility.
DSM 5 has suddenly become a star press attraction. In just the last three weeks, more than 100 news stories featuring DSM 5 appeared in major media outlets located in more than a dozen countries. (For a representative sample see Suzy Chapman's post on Dx Revision Watch.) The explosion of interest started with a flurry when The New York Times published two long DSM 5 articles and three DSM-5-related op-ed pieces, all within a few days. An unrelated press conference in London then generated a widely distributed Reuters story and also many independent pieces. Several other reporters had also been working on their own DSM 5 stories that just happened to arrive at the same time.
The intense press scrutiny of DSM 5 is really just beginning. I know of at least ten additional reporters who are preparing their work now for publication in the near future. And many of the journalists whose articles appeared during these last few weeks intend to stay on this story for the duration -- at least until DSM 5 is published, and probably beyond. They understand that DSM 5 is a document of great individual and societal consequence -- and that its impact and risks need a thorough public airing.
The press coverage has been almost uniformly and devastatingly negative. The two most common themes are 1) DSM 5 will radically expand the boundaries of psychiatry, medicalizing normality and leading to unneeded and harmful treatment; and 2) DSM 5 decisions are being made arbitrarily, based on narrow input and lacking sufficient scientific support. The DSM 5 proposals that have elicited the most concern are changes in the definition of autism and the expansion of major depressive disorder to capture much of normal grief.
The articles sometimes contain small inaccuracies and sometimes emphasize peripheral issues. And the most dangerous DSM 5 proposals get far too little mention. I will discuss in later blogs how DSM 5 will worsen the over-diagnosis of attention-deficit disorder and the over-prescription of antipsychotic mediation. But the press has gotten the main points just right and somehow manages to see the risks of DSM 5 much more clearly than do the people working on it.
Will the American Psychiatric Association finally listen to this concentrated chorus of criticism? At a critical 11th hour, when all else has failed, will the world's reporters save DSM 5 from itself? Is the power of the pen mightier than the thick walls that have so far protected DSM 5 from self-correction? Can the irresistible force of the press move the previously immovable DSM 5 object?
The initial DSM 5 responses are not encouraging -- the usual brew of inaccurate, misleading, and unconvincing statements that never tackle any of the issues in a substantial way. And APA has previously proven itself to be remarkably oblivious, dogged, and stubborn. During these past two years, DSM 5 has made almost no changes in its proposals -- despite their having received widespread criticisms. APA has also casually shrugged off a petition opposing many DSM 5 proposals and requesting that they be subjected to an independent scientific review. The fact that the petition is endorsed by no fewer than 47 different and substantial mental health organizations seems to have carried no weight whatsoever. And APA dismisses the plan of many previous users to boycott DSM 5 by substituting the alternative coding system of ICD-10-CM (which will be freely available on the Internet).
Will the unfavorable press result in a more favorable DSM 5 outcome? Surely we must hope so -- because so few other corrective options are available. DSM 5 remains steadfast and rigid in its support of really bad proposals with extremely dangerous unintended public health consequences. A very small group of out-of-touch DSM 5 experts is now extremely close to achieving what amounts to a radical coup -- redefining a greatly expanded psychiatry at the expense of a quickly shrinking normality. The many expressions of professional and public opposition from outside this hermetically sealed inner circle have been ignored almost completely.
But I have some hope that this concentrated press barrage may succeed where previous efforts have failed. It is fair to say that DSM 5 has become an object of general public and professional scorn. Perhaps now at last, prodded by the world press, DSM 5 will have to heed the unanimous cautionary warnings. Let's hope it will finally come to its senses and cut its losses by rejecting the worst proposals. This will be a service to psychiatry and, most important, to our current and future patients. Paradoxically, the terribly embarrassing press it is receiving now may save DSM 5 and APA much greater embarrassment in the future and, more importantly, prevent the mislabeling as mentally ill of literally millions of people, and their potential exposure to unnecessary and risky medications.
Originally Published by Huffington Post on February 15, 2012.
Until yesterday, there were only two reasons to stick with the projected date of DSM 5 publication (May 2013): 1) the need to coordinate DSM 5 with ICD-10-CM coding, which was scheduled to start Oct 2013; and, 2) the need to protect APA publishing profits in order to meet budget projections.
The first reason just dropped out. Health and Human Services (HHS) Secretary Kathleen G. Sebelius has announced that the start date for ICD-10-CM has been postponed. It is not yet clear for how long, but most likely a year.
This latest delay in implementing ICD-10-CM is the government's response to pressure by medical providers worried about the cost of changing systems. ICD 10 was available 20 years ago and has been official around the world for some time. The long US lag has been a cost saving measure - it will take billions of dollars to get all health system computers to switch coding systems. Indeed, there are many who would like to take this delay one giant step further by canceling ICD-10-CM altogether and leap frogging to ICD 11 (which will be ready around 2015 or 2016).
Consequently, there is only one reason left to rush DSM 5 to print- the prospect of publishing profits. This would be a shame because DSM 5 is nowhere near ready to be born. Why do I say this and what needs to be done before it can responsibly turned loose on the field?
1) During the past month, there have been well over 100 highly critical news articles in major media outlets all around the world decrying the the many risks of DSM 5 proposals. APA's internal scientific review of these DSM 5 proposals is being conducted in secret and has absolutely no credibility to the outside world. DSM 5 will continue to be ridiculed and ultimately will be rejected unless its extremely controversial proposals are dropped or are subjected to independent scientific review- and such outside review will take time.
2) DSM 5 made a great mistake when it cancelled the crucially important second stage of its field trials. This was made necessary because constant delays in completing its first stage left no remaining time for its second—that is assuming that the May 2013 publication date had to be met at all costs. DSM 5 also warned us that its imprecisely written criteria sets performed so poorly in the first stage of the field trials that historically unacceptable reliabilities (barely better than chance) will now be accepted for DSM 5. This is simply unacceptable. DSM 5 should complete both stages of its field trials as originally scheduled. This means rewriting and retesting the poorly performing diagnoses. And this will take time.
3) The planned DSM 5 clinician's field trial appears to be almost completely dead in the water- plagued by disorganization, constant delays, and a ridiculously high attrition rate. If this is to be done properly, it too will take time to complete.
The original publication date of DSM 5 was 2011. This had to be delayed for a year and then again for another year because of poor planning and disorganized implementation. Continued unexplained delays again have DSM 5 so far behind its own schedule that May 2013 can now be met only with a third rate product that cannot possibly gain the wide acceptance enjoyed by previous DSM 's. The only responsible APA action is to delay DSM 5 publication yet again until it has successfully accomplished all the steps planned in its own original timetable.
The only reason for APA to prematurely rush out a poor DSM 5 product is profit- and given its importance this is simply no excuse at all.
My three criticisms of DSM-5 have been: 1) risky suggestions; 2) bad writing; and 3) poor planning and disorganization. I have pretty much failed to have any real impact on DSM-5; other than perhaps successfully pressuring APA to delay its publication once before, moving it from May 2012 to May 2013. The one-year extension has been largely wasted, the risky suggestions and bad writing remain, and constant warnings that missed deadlines would lead to a mad and careless race at the end were ignored.
With less than a year remaining before DSM-5 is scheduled to go to print, the signs are clear that it cannot possibly be completed on time unless we are willing to settle for a third rate product. The unmistakable red flag is the recent embarrassing admission that DSM-5 will accept diagnoses that achieve reliabilities as unbelievably low as 0.2-0.4 (barely beating the level of chance agreement two monkeys could achieve throwing darts at a diagnostic board). This dramatic departure from the much higher standards of previous DSM's is a sure tip-off that many DSM-5 proposals must be failing to achieve adequate diagnostic agreement in the repeatedly delayed and yet to be reported field trials. Unable to meet expected standards, the DSM-5 Task Force is drastically and desperately trying to lower our expectations.
After reading the first drafts posted in early February 2010, I warned that DSM-5 was in for severe reliability problems. The criteria sets were in remarkably raw form; clearly, they were no more than the draft product of the work groups deprived of the extensive editing needed to turn vague diagnostic concepts into precise, unambiguous, and consistent diagnostic criteria. It was apparent that reasonable diagnostic agreement would be impossible to achieve with criteria so poorly and confusingly written.
The writing of criteria sets is a highly specialized skill that requires a clinician's experience, a computer scientist's command of algorithmic logic, and a lawyer's vigilance. I have known only a handful of people who have mastered this exotic craft and must admit that I cannot myself write decent criteria, despite years of trying to learn. If anyone working on DSM-5 had this necessary skill, the initial drafts would not have been made public in such a ragged and amateur state and the writing has not improved appreciably since. All of the DSM IV options entered field-testing in final draft form - every word had already been subjected to many iterations and countless reviews. In contrast, DSM-5 went into field-testing with primitive drafts that were painful to read.
The original plan for DSM-5 did have a necessary fail-safe; its field-testing was meant to be conducted in two stages. Those criteria sets that performed poorly in the first phase could then be rewritten by the work groups and retested to prove their mettle in the second stage. But disorganization kept delaying the start and plagued the execution of the field trials and deadlines were consistently missed, so that the reporting of results fell at least eighteen months behind the original schedule. For want of time, the absolutely necessary second phase was cancelled, thus circumventing the rewriting and the retesting needed to improve the poorly written criteria. The decision to take this unfortunate shortcut was done secretively, without any announcement or any discussion of its detrimental impact. So, it now appears that APA plans to publish poorly worded criteria sets as the official DSM-5, despite the fact that they have performed poorly in field-testing. The product will be a confusing DSM-5 that fails to provide the diagnostic agreement that is vital for clinical communication, research, and forensics.
The wise, safe, and responsible thing for APA to do now is to delay publication of DSM-5 until the missing second stage of rewriting and retesting can be completed. The wordings that have done poorly in the first stage of field-testing should be rewritten to finally attain the clarity and consistency necessary in an official manual of psychiatric diagnosis. The newly revised (and hopefully final) versions should then undergo the second stage of field-testing as originally envisaged to ensure that they now work. The extra time will also allow for the independent scientific reviews of controversial DSM-5 proposals called for in a petition that has already been signed by more than 11,000 mental health professionals and is endorsed by 40 professional organizations (including many divisions of the American Psychological Association, the American Counseling Association, and the British Psychological Society).
Will APA do what is needed to protect us from a poor quality DSM-5 and instead guarantee one that is safe and scientifically sound? It seems unlikely. The DSM-5 publishing profits that are essential to APA budget projections require there be a May 2013 debut of the manual in bookstores, come hell or high water. So instead of getting DSM-5 up to minimal standards of quality, DSM-5 is trying to drop the standards to minimal - 0.2-0.4 will have to do.
What about the DSM-5 claim that its field trials are so rigorous that we should entertain only the lowest possible expectations of them? This is nonsense. The DSM-5 field trials were in fact conducted under very privileged circumstances that would guarantee much higher levels of reliability than could ever be achieved in everyday clinical practice: 1) Testing was performed in academic centers with a homogeneous corps of well trained raters interested in psychiatric diagnosis and trying their best because judgments were being observed; 2) Raters had access to the results of a computerized self report instrument, thus reducing information variance; 3) Each site specialized in a limited number of target diagnoses that were known to the raters who would therefore be on the watch for them; 4) The unrealistically high prevalence of target disorders in the sites made agreement much easier than the more needle-in-haystack situation of routine practice; 5) Academic settings attract a selected group of the more severely ill patients who are easier to diagnose reliably; and 6) The time allotted for diagnostic interviews exceeded what is typical in clinical practice.
Despite all these advantages, the DSM-5 Task Force is inviting us to settle for levels of agreement just above chance. If DSM-5 performs so poorly when the deck is heavily stacked in its favor, how will it perform in the rough and tumble of the real world?
Which leads to the question: what can be done now to rescue a failing DSM-5? The APA Trustees are face to face with a chilling but unavoidable moment of truth. The press, the Internet, even the TV is filled with prominent stories highly critical of DSM-5. There is simply no way to hide its recklessness and low quality standards. A May 2013 publication date appears to be completely unrealistic unless we are to settle for a DSM-5 so poorly done that its reliabilities will return us to the dark ages of DSM II. DSM-5 is in a very deep hole with very few remaining options.
My recommendations: 1) Make the publication date flexible and contingent on delivery of a quality product that the field can trust; 2) Subject the current drafts and texts to extensive editing for clarity and consistency; 3) Drop the controversial suggestions that risk harmful unintended consequences or at least subject them to external scientific review; 4) Have the rewritten drafts reviewed word for word by many experts in the clinical, research, and forensic uses of DSM-5; and 5) Field test again to make sure the new versions work adequately.
It will be argued back that my suggestions will take time and cost money. But APA has spent a reported $25 million on preparing DSM-5- much of it clearly wasted in missteps. A little more time and a little more money will be very well spent, if this is the only way to salvage a DSM-5 that can be trusted.
The last point is many critics use the specific failures of DSM-5 as justification to attack the entire enterprise of psychiatry. I strongly disagree. DSM-5 is no more than an unfortunate aberration reflecting the temporary state of weak and misguided APA leadership. The work on DSM-5 went off track because of unrealizable ambitions; a closed and secretive process; and insufficient attention to the day-to-day details of prudent planning, management, and careful writing. Because of its poor performance on DSM-5, APA has probably forfeited its right to sole control of future revisions. But all this represents only the specific failure of DSM-5, not a general reflection on what psychiatry is and what it can accomplish. Done well and within its reasonable limits, psychiatry is an extremely helpful and essential profession. It would be a shame to throw the valuable baby out with the bath water or discourage patients from getting the psychiatric help they need and can benefit from. Admittedly, DSM-5 is an embarrassment and a serious hit to our credibility, but we will recover and our patients should not lose faith.
My biggest concern regarding DSM-5 is that it will dramatically increase the rates of mental disorder by cheapening the currency of psychiatric diagnosis — arbitrarily and carelessly reducing thresholds for existing disorders and introducing new disorders with high prevalence. This would create millions of newly mislabeled ‘patients,’ resulting in unnecessary and potentially harmful treatment, stigma, and wasteful misallocation of scarce resources.
In a recent commentary in the American Journal of Psychiatry, the DSM-5 leadership defend their opposite position — stating that they are indifferent to the manual’s impact on rates and justifying this on the grounds that no one knows for sure what the true or optimal rates should be. In my previous blog, I responded to this indifference and chided the Task Force for ignoring the real-world unintended consequences that will follow their dramatically raising the prevalence rates of many of the mental disorders.
The Task Force has come back with the following Q and A, which popped up at the APA website apparently in response to my warnings about diagnostic inflation.
Q: Was prevalence estimated in the DSM-5 Field Trials?
A: The prevalence of every target diagnosis evaluated in the field trial was estimated.
Q: Will the prevalence of DSM-5 disorders be very much higher than the
prevalence of DSM-IV disorders?
A: In general, the prevalence rates of the diagnoses evaluated in the Field
Trials are slightly lower than DSM-IV prevalence rates.
The wording is remarkably misleading. Note that the DSM-IV rates in the field trial were “estimated” by chart review, but that the DSM-5 rates were “evaluated” by systematic interview. This results in a totally meaningless comparison of apples and oranges. The DSM-IV and DSM-5 rates should have been systematically compared (as is customary) using common data gathered in the field trial diagnostic interviews. This is absolutely standard research operating procedure — always compare apples to apples, don’t switch assessment methods. It is beyond understanding why this simple step was omitted in the DSM-5 field trials and why chart diagnosis is offered now as a lame substitute.
The Q/A prediction that DSM-5 prevalence rates will be lower than DSM-IV is wrong, impossible, even laughable. It is obvious that most changes suggested for DSM-5 will increase prevalence rates above those in DSM-IV, often quite dramatically. The DSM-5 team should know better than to claim otherwise. I am not sure which interpretation is worse — that DSM-5 is being deliberately misleading or that DSM-5 is terminally self-deluding. Either way, its failure to measure comparative prevalence in the field trial is an unaccountable error and its failure to reckon the risky consequences of the DSM-5 proposals is just plain reckless.
As I first pointed out before the DSM-5 field trials began, the proper design should have included:
1) For existing disorders: Ratings of DSM-IV, ICD 10, and DSM-5 criteria items to allow comparison of rates across the three systems.
2) For new disorders: sampling their likely rates in general psychiatric settings, in primary care, and (by telephone) in the general population.
The academic centers that were selected for DSM-5 field testing are ivory towers that don’t generalize well to the real world. Indeed, most psychiatric diagnosis and medication treatment is now done by primary-care doctors and the impact of DSM-5 must be tested where it will most be used.
The whole purpose of field testing is to identify and correct problems in the preliminary DSM suggestions before they become set in stone as official guides to diagnostic practice. The design of the DSM-5 field trial unaccountably left out the most important question (its impact in rates) and the most important settings (routine clinical practice). The DSM-5 leadership now provides a fudged, incorrect, and belated reply to the risks of diagnostic inflation — don’t worry, it won’t happen. Such willful blindness is a sure prescription for bad surprises. Unless corrected before publication, DSM-5 will inflict many and serious unintended consequences.
This is the title of a disturbing commentary written by the leaders of the DSM-5 Task Force and published in this month’s American Journal of Psychiatry. The contents suggest that we must lower our expectations and be satisfied with levels of unreliability in DSM-5 that historically have been clearly unacceptable. Two approaches are possible when the DSM-5 field trials reveal low reliability for a given suggestion: 1) admit that the suggestion was a bad idea or that it is written so ambiguously as to be unusable in clinical practice, research, and forensics; Or, 2) declare by arbitrary fiat that the low reliability is indeed now to be relabeled ‘acceptable.’
In the past, ‘acceptable’ meant kappas of 0.6 or above. When the personality disorders in DSM-III came in at 0.54, they were roundly derided and given only a reluctant bye. For DSM-5, ‘acceptable’ reliability has been reduced to a startling 0.2-0.4. This barely exceeds the level of agreement you might expect to get by pure chance.
Previously in its development, DSM-5 has placed great store in its field trials. This quote is from the Chair of the DSM-5 Task Force: “There’s a myth that all the decisions have been made, when in fact, all the decisions haven’t been made. Just because things have been proposed doesn’t necessarily mean they’ll end up in the DSM-5. If they don’t achieve a level of reliability, clinician acceptability, and utility, it’s unlikely they’ll go forward.”
And this quote is from a 2010 interview given to a science writer by the head of the DSM-5 Oversight Committee: “It’s going to be based on the work of the field trials -- based on the assessment and analysis of them. I don’t think anyone is going to say we’ve got to go forward if we get crappy results.”
The DSM-5 tune has now changed dramatically. The commentary written for AJP by the leadership of DSM-5 Task Force appears to be suggesting that they will, in fact, “go forward,” and with sub-par reliabilities of 0.2-0.4.
Now consider that the original field trial plan was to have a second phase to permit fixing those diagnostic criteria that were found to have unacceptable reliability in the first phase. These would go back to the workgroups who could then rewrite the offending criteria and retest the new version in the second phase of the field trial. But poor planning and administrative foul-ups kept pushing back the field trials so that they are now at least 18 months late in completion. As time was running out, DSM-5 leadership quietly dropped the second phase of the field trials, removing any reference to it from the timeline posted on the DSM-5 website. Their Plan B substitute for adequate field testing appears in AJP -- To wit: a drastic lowering of the bar for what is ‘acceptable’ reliability.
Can ‘accepting’ unacceptably poor agreement uphold the integrity of psychiatric diagnosis? Poor reliability degrades our ability to communicate with one another clinically, and prohibits meaningful research. ‘Accepting’ as reliable kappas of 0.2-0.4 is to go backwards more than thirty years to the days of DSM II. Before DSM III, Bob Spitzer and Mel Sabshin saw the need to develop a criterion-based system that could achieve reasonable diagnostic agreement. This is the very minimum condition necessary for current clinical work and future progress in psychiatry.
DSM-5 will have a big impact on how millions of lives are led and how scarce mental health resources are spent. Getting the right diagnosis and treatment can be life enhancing, even life saving. Incorrect diagnosis can lead to the prescription of unnecessary and potentially harmful medication and to the diversion of services away from those who really need them and toward those who are better left alone. Preparing DSM-5 should be a public trust of the highest order.
But DSM-5 is also an enormously profitable commercial venture. DSMs are perpetual best sellers, at least 100,000 copies are sold every year, netting the American Psychiatric Association yearly profits exceeding $5 million.
From the very start of work on DSM-5, the APA took unprecedented steps to protect its commercial interest -- but in the process betrayed its obligation to the public trust. Work group members were recruited only on condition that they first sign confidentiality agreements, thereby squelching the free flow of ideas that is absolutely necessary to produce a quality diagnostic manual. “Intellectual property” has been the priority -- a safe, scientifically sound DSM-5 has been the victim.
DSM-5 commercialism and heavy-handed censorship have recently assumed a new and troubling form. The APA is exercising its “DSM-5” trademark to unfairly stifle an extremely valuable source of information. Suzy Chapman, a patient advocate from England, runs a highly respected and authoritative site providing the best available information on the preparation of both DSM and ICD. Her writings can always be relied upon for fairness, accuracy, timeliness, and clarity. The site has gained a grateful following with over 40,000 views in its first two years.
Ms. Chapman recently sent me the following e-mail describing her David vs. Goliath struggle with the APA and its disturbing implications both for DSM-5 and for internet freedom:
"Until last week, my website published under the domain name
http://dsm5watch.wordpress.com/. On December 22, I was stunned to receive two emails from the Licensing and Permissions department of American Psychiatric Publishing, claiming that the domain name my site operates under was infringing upon the DSM-5 trademark in violation of United States Trademark Law and that my unauthorized actions may subject me to contributory infringement liability including increased damages for willful infringement. I was told to cease and desist immediately all use of the DSM-5 mark and to provide documentation within ten days confirming I had done so."
"Given my limited resources compared with the APA's deep pockets, I had no choice but to comply and was forced to change my site's domain name to http://dxrevisionwatch.wordpress.com. Hits to the new site have plummeted dramatically, and it will take months for traffic to recover -- just at the time when crucial DSM-5 decisions are being made."
"Was APA justified in seeking to exercise its trademark rights in this situation? Or do the APA's actions fly in the face of accepted internet trademark practice, common sense, and good public relations? I am not a lawyer, but I have made a careful study of 'U.S. Trademark Law, Rules of Practice & Federal Statutes, U.S. Patent & Trademark Office, November 8, 2011' and of many other available sources. My conclusion is that the APA is making excessive and unwarranted claims for its DSM-5 trademark. Courts have found that using a trademark in a domain, or subdomain name, is ‘fair use’ if the purpose is non-commercial, where there is no intent to mislead, where use of the mark is pertinent to the subject of discussion, and where it is clear that the user is not implying endorsement by, or affiliation with, the holder of the mark."
"The home page of my site clearly defines its purpose -- 'DSM-5 and ICD-11 Watch - Monitoring the development of DSM-5, ICD-11, ICD-10-CM' and carries this disclaimer, 'This site has no connection with and is not endorsed by the American Psychiatric Association (APA), American Psychiatric Publishing Inc., World Health Organization (WHO) or any other organization, institution, corporation or company. This site has no affiliations with any commercial or not-for-profit organization ... This site does not accept advertising, sponsorship, funding or donations, and has no commercial links with any organization, institution, corporation, company or individual.”
"It puzzles and worries me that the APA would seek to suppress my clearly non-commercial resource created only to provide information and commentary on the revision process of two internationally used classifications. My only purpose is to inform interested stakeholders and those patient groups whose medical and social care may potentially be impacted by proposals for changes to diagnostic categories and criteria."
"There is a paradox here. The APA has promoted its commitment to transparency of process, but has rarely demonstrated it. Much has been made of the posting of drafts for public review and soliciting feedback. But to usefully participate in this process, patients, patient groups, and advocacy organizations, need to know about proposed changes and when, and by what means, they can input comment during public review periods. Now, because of the APA's arbitrary actions, it will be harder for them to find the information they need - just when they most need it."
I am surprised and saddened by the APA's ill-conceived attempt to restrict Suzy Chapman's free expression on DSM-5. It can only be in the service of the equally unworthy goals of censorship and/or commercialism. I simply can't imagine that anything should ever be kept secret in the preparation of a diagnostic manual and wonder what in Suzy Chapman's web site could possibly be so frightening to the APA.
Using a trademark to suppress comment is a violation of the APA's public trust to produce the best possible DSM-5. This is another indication that DSM has become too important for public health, and for public policy, for its revisions to be left under the exclusive control of one professional organization - particularly when that organization's own financial future is at stake. This basic conflict of interest can be cured only by creating a new institutional framework to supervise the future DSM revisions. Censorship and commercial motivations must not warp the development of a safe and scientifically sound diagnostic manual.
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Nice read, I just passed this onto a friend who was doing a little research on that. And he actually bought me lunch as I found it for him smile Therefore let me rephrase that: Thank you for lunch! "C...
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Dr. Allen Frances is professor emeritus at Duke University, where he was previously chair of its department of psychiatry and behavioral sciences. He was also chair of the DSM-4...Read More
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