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.
Dr. Dayle Jones has become one of the world's leading experts on DSM-5 and on psychiatric diagnosis. As chair of the American Counseling Association's DSM-5 Task Force, she closely follows the DSM-5 process and trenchantly critiques the DSM-5 proposals (see her blogs at http://my.counseling.org/category/dayle-jones/). Dr. Jones just sent me the following alarming email. From Dr. Jones: "DSM-5 keeps missing its own deadlines and the DSM-5 publication date is fast approaching. I am afraid there is insufficient time left for thoughtful preparation or adequate public input. Here's a brief history of DSM-5's consistent failure to deliver on time.
On the DSM-5 Field Trials in Academic/Large Clinic Settings: these were originally scheduled to begin in 2009, prior even to the draft proposals being reviewed and vetted by outside mental health professionals. But after much criticism, the DSM-5 Task Force wisely postponed the start date to June 2010. Unfortunately, the Task Force then came up with an impossibly complicated field trial design that was roundly criticized for missing the relevant questions and having a completely unrealistic timetable. Not surprisingly, the start and end dates have been repeatedly delayed. The study was originally planned for completion in early 2010, then in early 2011, and now we are entering 2012 with still no end in sight. This expensive field trial will be essentially worthless because of its lateness, its poor design, which doesn't test the impact of DSM-5 on diagnostic inflation, and its failure to test final DSM-5 wordings because these were not always ready on time.
On the Routine Clinical Practice Field Trial: I have serious concerns whether this will ever get done. I just received a flyer by APA’s Practice Research Network called “Inside the DSM-5 Field Trials” (December, 2011), which stated that since July 2011, “clinicians from around the globe,” have volunteered to participate in the trial. But APA surreptitiously avoided mentioning that the volunteer selection and training process was originally to have been completed by August 2010 and has been delayed first to 2011 and now to 2012. The whole effort has been wrought with confusion, disorganization, ineptitude, and constant delays. I applied to be a volunteer clinician in November 2010 and was accepted April 29, 2011. Between April and late August, I experienced numerous problems: no contact about training, no responses to repeated emails or phone calls, inability to access field trial information online, the APA losing my consent form, and being informed three times that training materials would be emailed, “in a few weeks,” - which never happened. Finally, after these many miscues, the field trials, “officially” began in September 2011. In November, the APA announced it was extending the field trials to March 2012 in order to recruit more participants. There’s a desperate failure motivating this extension – according to the APA flyer, out of “over 5000 clinicians” eligible to participate, only 195 have completed the training, and a mere 70 (1.4 percent) are enrolling patients. This field trial is clearly a total bust.
On The Open Periods For Public Comment: the APA has repeatedly bragged about the, “unprecedented” open comment periods whereby clinicians can post comments about the DSM-5 proposals online during specified time periods. Ironically, the first comment period in February/April 2010 was initiated only after outside pressure insisted that all proposed revisions be reviewed and vetted by the field before field trials could begin. Interestingly, very few substantive changes have been made in response to public comments since the first drafts were posted, despite the fact that so many DSM-5 proposals have been so heavily criticized. The final public comment period was originally scheduled for September/October 2011, but has been twice postponed, because everything is so far behind, first to January/February 2012 and recently to May 2012. Given this late date, new public feedback will almost certainly have no impact whatever on DSM-5 and appears to be no more than a public relations gimmick."
Dr. Jones provides a concise description of DSM-5 disorganization and record of failed promises. It remains a puzzlement that the Trustees of the American Psychiatric Association continue to sit passively on the sidelines, fiddling while DSM-5 fizzles. In our 6/9/09 warning letter, Bob Spitzer and I pointed out to them that the poor DSM-5 planning and surprisingly sloppy execution had made completely impossible the then scheduled publication date of May 2012. Soon after, the APA wisely postponed publication for one year.
In various blogs since, I have warned that the DSM-5 process has suffered from continued disarray, with constantly missed deadlines, reckless proposals, and a poorly written product. I have long predicted that there would be a headlong and heedless rush at the end to meet the new deadline of May 2013, with the inevitable mistakes, inconsistencies, and poor quality.
The lack of progress on DSM-5 has disappointed even my seemingly quite pessimistic expectations. The current DSM-5 postings continue to contain many dangerous suggestions as well as (mostly) poorly written, ambiguous, and inconsistent criteria sets. The DSM-5 field trials are so poorly designed and so late in coming that they cannot serve as the much needed filter to eliminate the most egregious problems, instead they seem intended to provide no more than transparent window dressing for a failed process and a defective product.
Here is another warning. Although we never once missed a deadline in preparing DSM-IV, we still had great difficulty at the end completing all the many steps of writing and rectification necessary to have a clean and consistent final product. Every single word in any DSM is a potential target of misuse in forensic settings, of confusion for researchers, of puzzlement for clinicians, and of despair for teachers and students. The final steps of preparation of any DSM require an abundance of unrushed time, care, patience as well as continual cross-checking and meticulous editing. None of which will be available for DSM-5.
Given all that is undone and poorly done and the ongoing remarkable state of disarray, the May 2013 publication date for DSM-5 has itself become impossibly premature. In any sensible world there would be yet another year's delay to clean up the current mess. But because projected DSM-5 publishing profits are essential to the meeting the projected APA budget, May 2013 will almost certainly be the one and only deadline DSM-5 will ever meet. It now seems clear that DSM-5 will be born well before its time in an impossibly ragged and possibly unusable state.
When it comes to DSM-5, experience has proven conclusively that the American Psychiatric Association will not attend to the science, evaluate the risks, or listen to reason. A user’s revolt has become the last and only hope for derailing the worst of the DSM-5 suggestions.
Why might this work? The APA budget depends heavily on publishing profits. DSM’s sell over 100,000 copies and generate about $5 million in profit even in a dull year. This is multiplied several fold at the golden moment when any new DSM is introduced. Meaningful reform will occur only if DSM-5 faces the serious risk of a user’s boycott (replacing it with what will be the freely available ICD-10-CM ). Certainly, in any sensible world, this threat should have no part in the way diagnostic decisions are made. But DSM-5 is more of an Alice in Wonderland world — what should count least (or not at all) may now count most.
Will the petition work? It certainly faces an uphill struggle. APA will have to be shaken out of its inherent leaden complacency which has been further enhanced by the fact that DSM-IV-TR is still selling extremely well even though presumably it will soon be obsolete. The accepted APA wisdom is that the DSM monopoly over diagnosis is so strong and its audience so captive (particularly among students) that criticisms about DSM-5 content, however widespread and damning, can be simply and safely ignored.
The only serious challenge to this APA obstinacy is the Petition To Reform DSM-5. But the petition poses a significant threat to sales only if so many people sign it that DSM-5 finds itself thoroughly discredited in the eyes of both the mental health professions and the general public. I don’t know what is the magic number of signers — but probably it is somewhere between 10,000 to 50,000. Ten thousand signers would almost certainly be too few, treated by APA as merely a drop in the huge book buyers’ market. My guess is that 50,000 would seal the deal and force APA to throw in its weak DSM-5 hand by eliminating its riskiest suggestions. The actual tipping point is probably somewhere in between —who knows where?
The APA stance will also be influenced by how devastating the media response is and the public reaction. Reporters quickly come to understand the great public health risks posed by DSM-5 suggestions that all promote diagnostic inflation and loose prescription habits. Actually anyone not working on DSM-5 seems to appreciate this almost instinctively. News stories about DSM-5 are uniformly negative unless they are generated by APA press releases or appear in its own house organ. The question is how much and how prominent will be the press coverage generated by the DSM-5 petition. My guess is that it will be extensive and extremely critical of DSM-5 and may embarrass it into reform. But this remains to be seen.
And there is an important caveat here. My hope is that press coverage doesn’t tar all of psychiatry (and feed the harmful antipsychiatry movement) just because DSM-5 is such a mess. Psychiatry is essential and extremely helpful — DSM-5 is no more than an unfortunate and temporary aberration. The petition is targeted against DSM-5, not against psychiatry. APA’s likely defensive response to the petition will be to dismiss it as the work of anti-psychiatry agitators. This should not be taken seriously. The effort is intended to save psychiatry from the harm being done to it by DSM-5.
This brings us finally to the numbers game. The petition was introduced in the most obscure way possible — on Saturday, October 22 with no fanfare, no Facebook, no Twitter, no website, no press release, nothing but a naked announcement. It was launched by extremely well-meaning people who had correctly identified the problems posed by DSM-5, but who did not have the resources or technical expertise to launch a well organized media and social networking campaign. The petition gained the support it has largely on its own spontaneous steam. At first, almost no one noticed the petition but soon it began attracting an average of over 250 signers per day and has already collected a total of more than 5,000 signatures.
The good news is that this steady growth has occurred mostly by spontaneous electrical word of mouth. Many blog sites have picked up the petition, 17 additional mental health organizations have endorsed it, and people must be busy passing it on to their colleagues. This informal beginning is now slowly being augmented by more sophisticated press, Facebook, Twitter, and website methods. Press interest has already emerged spontaneously with very favorable stories in Nature News and Medscape and many other reporters are now picking up on the story.
The DSM-5 petition clearly has legs, but whether it can fly is still an open question. Its reach will depend on two things: how many people sign on and then how many additional colleagues each signer recruits. It is unknowable whether there will be a weak or powerful network effect. If each signer encourages only one (or none) other colleague, growth will be slow and linear and may top out at 10,000-20,000. This is a very substantial number of professionals frightened by DSM-5 and certainly should chasten APA to much greater caution, but given past performance it probably won’t have much effect. In contrast, let’s suppose each signer encourages five others to sign and two actually do. Then growth will become rapid and exponential and will soon force APA into a serious and much belated rethink of its worst suggestions.
These are very early days. It is far too soon to predict the fate of the DSM-5 petition and the magnitude of its potential impact. It is certainly quite encouraging that its early growth has been so steady without really trying — and that the many additional opportunities for Internet and media dissemination have not yet been fully exploited. Clearly, there is room for very substantial upside growth once the petition is more efficiently disseminated.
But there is also no room whatever for complacency; only a really massive response will force the sleeping leadership of APA to take the corrective action of rejecting the riskiest of the DSM-5 proposals. For anyone seriously concerned about the unintended consequences of DSM-5, the bottom line is clear. Please send the petition (http://www.ipetitions.com/petition/dsm5/) to five of your colleagues so that they may judge whether they would like to join. Exponential growth is the essential key to the petition’s success — and so far the petition’s growth has been no more than linear. Only the resounding voice of the people will save DSM-5 from itself.
Psychiatrists may be more reluctant than are other mental health clinicians to sign a petition questioning the safety and value of DSM-5. After all, it is the American Psychiatric Association that is sponsoring DSM-5 and there is a natural tendency to want to trust the wisdom of one's own association. We also tend to feel the greatest loyalty to our profession when it seems to be under sharp attack.
All of this is completely understandable to me. I have not felt the least bit comfortable assuming the role fate assigned me as critic of DSM-5 and of the
APA. It was a case of responsibility calling and my feeling compelled to answer.
If DSM-5 were not proposing some really dangerous changes, I would have stayed comfortably on the sidelines. But I think DSM-5 is too risky to ignore and that all psychiatrists should feel the same call that I did to restrain it before it is too late.
What needs to be done to get a safe and credible DSM-5? Clearly, an independent review is needed to evaluate about a dozen of the most radical DSM-5 proposals -- the ones that are bad for patients and bad for the credibility of the APA and psychiatry. The petition urges the APA to take the necessary step of reevaluating the most questionable proposals before they are set in stone. The APA's own internal review process has failed to be rigorous or independent enough to convince anyone outside of the small (and out of touch) circle of the DSM-5 and APA leadership.
Here are some of the issues that scare me about DSM-5 and I think should also scare you:
1) DSM-5 is suggesting many new and untested diagnoses and also markedly reduced thresholds for old ones. This will result in inaccurate diagnosis, massive diagnostic inflation, unnecessary stigma, harmful misuse of medications and misallocation of resources.
2) Overprescription of psychotropic medications (particularly by primary care physicians) is already out of control. Remarkably, antipsychotics have become the No. 1 revenue producer of all classes of drugs. Antidepressants are fourth and anti-anxiety meds are eighth. 11 percent of the population is on antidepressants; 4 percent of kids are on stimulants. There are now more ER visits for overdoses with prescription meds than with street drugs. Most of the prescribing is done by primary care doctors who have little training, no time, and are susceptible to drug company "education" and patient pressure. Psychiatrists must take the lead in advocating for more careful diagnosis and responsible prescribing habits. The DSM-5 suggestions all go in just the wrong direction of promoting loose diagnosis and loose prescribing.
3) DSM-5 has been sloppily organized and wastefully done. Every single deadline has been badly missed, leading to a mad rush at the end. The field trials will cost the APA several million wasted dollars and will yield no useful information.
The scientific review has been cursory and has no credibility. The extended persistence of really foolish suggestions is a great embarrassment to DSM-5 and to the APA.
4) The APA leadership has been passive and unresponsive to warnings that DSM-5 has been running off the rails. They will awake from their leaden stupor and take responsible fiduciary action only under pressure from the membership.
You may be asking yourself -- how could Frances possibly be right and all those DSM-5 experts be so wrong? The answer is simple. The people preparing DSM-5 are well meaning, smart, and expert in their highly specialized fields, but they are mostly ivory tower research types who have not had much real-world clinical experience and don't understand what will be the unintended consequences of their DSM-5 suggestions. Bob Spitzer and I have been through the mill with DSM-III, DSM-IIIR, and DSM-IV and know what are the pitfalls and dangers because we have lived through them. DSM-5 has been running blindly into a whole series of unnecessary minefields and is paying a heavy price for its inability to chart a safe course.
Here is the worst example among many bad DSM-5 suggestions for new diagnoses (indeed, this is the one that got me alarmed enough to speak up two years ago). Attenuated psychosis syndrome will have a ridiculously high false positive rate ( 80 percent to 90 percent), no effective treatment, would promote unnecessary exposure to harmful antipsychotics, and would cause needless worry and stigma. Since studies prove conclusively that the symptoms are so very rarely predictive of psychosis, why in the world would DSM-5 give someone the stigmatizing and absurdly misleading label of attenuated psychosis syndrome and open the door to inappropriate antipsychotic use. Recognizing all these risks, a large portion of schizophrenia and prodromal researchers are sensibly opposed to the inclusion of attenuated psychosis syndrome in DSM-5. But unaccountably, the work group stubbornly clings to its proposal and, without the petition, there is a good chance it may sneak into DSM-5.
This one really dreadful proposal should be enough to motivate your signing the petition, but there are a dozen more that are almost as frightening. And the other DSM-5 workgroups have been equally intransigent in defending proposals that are almost equally indefensible.
I am just one among many, many psychiatrists who fear the negative impact of a misguided DSM-5 on our patients and profession. The Society Of Biological Psychiatry published an editorial suggesting DSM-5 be scrapped. All psychiatrists who care about personality disorders are appalled by the DSM-5 personality disorders section. And here is a telling statement made by James Dillon, MD as he was signing the DSM-5 petition-"I am the chief psychiatrist in the Department of Community Health for Michigan... I will be discussing with my colleagues the merit of abandoning the DSM altogether in favor of the ICD system if DSM-5, as currently proposed (It is November 2011), is formally adopted." The APA leadership must hear from the members it is supposed to represent just how alarmed they are by the reckless DSM-5 proposals and the embarrassment they are causing our field.
What are the risks to DSM-5 and to APA if DSM-5 is not reformed? Unless corrected, DSM-5 will be bad for patient care, may cost APA stewardship of future SM revisions, and will do grave harm to the credibility of the APA and psychiatry. The APA leadership has been asleep at the wheel and should never have allowed DSM-5 to become such a public embarrassment.
But what is the most compelling reason for signing the petition to reform DSM-5? This is easy. Our first responsibility as physicians is to DO NO HARM!!! DSM-5 will do grave harm to the people who are misdiagnosed and then often receive unnecessary medication (especially the widely overprescribed antipsychotics that can cause such dangerous weight gains).
On a personal note, I was enjoying a peaceful and happy beach retirement and had several times resisted Bob Spitzer's early entreaties to join him in pointing out that DSM-5 was headed for serious trouble. I saw it as Bob's fight, not mine. Only years later was I forced to speak when it became clear that the harm caused by DSM-5 was too egregious to ignore. I have complete empathy for anyone who prefers the sidelines -- I'd like to be there myself. But this one is not a close call and it is important that we all do the right thing for our patients and for psychiatry.
After all this controversy and opposition, there is one thing (and one thing only) that will save the credibility of DSM-5 and guarantee its safety — a credible process of external scientific review. The American Psychiatric Association is conducting its own internal scientific review, but it strikes out badly on all four requirements that must be met before a review deserves to be taken seriously as a trustworthy stamp of approval.
The scientific review must be:
1) Open: But DSM-5 is engaged in the curious process of a confidential, secret scientific review. Real science and real scientific review are completely incompatible with secrecy.
2) Independent: But most of the people reviewing the much-reviled DSM-5 suggestions have been closely involved in the development of DSM-5 and would have to recuse themselves if this were anything like an independent review.
3) Systematic: But the DSM-5 reviews show no method or thoroughness or consistency. Often most of papers cited were done by those making the proposals.
4) Rigorous: But the DSM-5 review process was discredited from its moment of birth. Its very first decision was to accept the scientific credentials of a new diagnosis invented six years ago and studied by just one group. This travesty could never have occurred were such an inadequate proposal exposed to external review.
The APA has failed to explain why anyone should accept as credible an internal scientific review process that is so closed, homegrown, cursory, and forgiving. APA also offers no explanation why external review doesn't make complete sense. There is every reason for everyone to be extremely skeptical and to demand a real scientific review.
None of the radical and highly controversial DSM-5 suggestions should be accepted unless and until first subjected to a completely independent review of scientific merit and a risk/benefit analysis of its likely impact on actual clinical practice. The most important outcome of the DSM-5 petition could be to smoke APA out on this issue and pressure it to invite outside review.
The DSM-5 petition is now less than a month old and has been signed by almost 6,200 people. In the first week the rate was about 250 people a day. In the last few days, the rate has grown to almost 500 per day. The petition is clearly gaining momentum. It can be accessed at http://www.ipetitions.com/petition/dsm5/
Several divisions of the American Psychological Association have just written an open letter highly critical of DSM-5. They are inviting mental health professionals and mental health organizations to sign a petition addressed to the DSM-5 Task Force of the American Psychiatric Association. (You can read the letter and sign up at http://www.ipetitions.com/petition/dsm5/.) It is an extremely detailed, thoughtful and well-written statement that deserves your attention and support.
The letter summarizes the grave dangers of DSM-5 that for some time have seemed patently apparent to everyone except those who are actually working on DSM-5. The short list of the most compelling problems includes: reckless expansion of the diagnostic system (through the inclusion of untested new diagnoses and reduced thresholds for old ones); the lack of scientific rigor and independent review; and dimensional proposals that are too impossibly complex ever to be used by clinicians.
The American Psychiatric Association has no special mandate or ownership rights giving it any special sovereignty over psychiatric diagnosis. APA took on the task of preparing DSM's sixty years ago because it then seemed so thankless that no other group was prepared or willing to do it. The DSM franchise has stayed with APA only because its products were credible enough to gain widespread acceptance. People used the manual only because it was useful.
DSM-5 has strained that credibility to the breaking point and (unless radically changed) will be much more harmful than useful. We have reached a turning point that will soon become a point of no return. A near final version of DSM-5 must be ready by next spring and all final wording will be set in stone within a year. Time is running out if DSM-5 is to be saved from itself.
Rescue attempts and pushback are coming from numerous directions and are fast gaining in momentum. The American Psychological Association was preceded by an even harsher critique by the British Psychological Society. The Society of Biological Psychiatry has wondered why we need a DSM-5. Experts in personality disorder have universally decried the proposed revisions in DSM-5. And the American Counseling Association will soon weigh in with its own statement on DSM-5.
Meanwhile DSM-5 has lived in a world that seems to be hermetically sealed. Despite the obvious impossibility of many of its proposals, it shows no ability to self-correct or learn from outside advice. The current drafts have changed almost not at all from their deeply flawed originals. The DSM-5 field trials ask the wrong questions and will make no contribution to the endgame.
But the DSM-5 deafness may finally be cured by a users' revolt. The APA budget depends heavily on the huge publishing profits that accrue from its DSM sales. APA has ignored the scientific, clinical, and public health reasons it should omit the most dangerous suggestions — but I suspect APA will be more sensitive to the looming risk of a boycott by users.
Here are best-case and worst-case scenarios. Best case: APA opens up DSM-5 to external, independent review and only those suggestions that pass muster are included. DSM-5 becomes safe, usable, and widely used.
Worst case: DSM-5 stumbles along blindly as it has and includes most or all of its harmful suggestions. It loses its status as a useful and standard guide to psychiatric diagnosis, creating an unnecessary and unfortunate Babel of practice and research habits. And the American Psychiatric Association goes broke.
The Trustees and Assembly have thus far been almost completely passive in exercising their governance role over DSM-5. I believe they can wait no longer if they are to fulfill their responsibility to the public, to the mental health field, and to their membership. It is pretty much now or never.
Within the next three to five years, we will likely have biological tests to accurately diagnose the prodrome of Alzheimer's disease (AD). Much remains to be done in standardizing these tests, determining their appropriate set points and patterns of results, and negotiating the difficult transition from research to general clinical practice. And, given the lack of effective treatment, there are legitimate concerns about the advisability of testing for the individual patient and the enormous societal expense with little tangible benefit. Despite these necessary caveats, there is no doubt that biological testing for prodromal AD will be an important milestone in the clinical application of neuroscience.
How does this impact on the DSM-5 proposal to include a Minor Neurocognitive Disorder as a presumed prodrome to AD? Clearly the advancing science makes this proposal obviously premature and unnecessary. Any DSM-5 definition has necessarily to be based exclusively on extremely fallible clinical criteria that will have unacceptably high false positive rates — surely exceeding 50 percent. Why scare half the people taking the tests unnecessarily, especially when there is no effective treatment even for those who are true positives?
Accurate diagnosis for prodromal AD most certainly requires biological tests and, fortunately, these are now well within reach. No purpose can possibly be served by rushing ahead with a second rate clinical method of prodrome diagnosis when accurate biological testing will so soon be available. DSM-5 can make a far better choice. It has declared itself to be a 'living document' with plans for continuing, ongoing revision as new findings justify changes. Prodromal AD is the perfect diagnosis for implementing this plan. Hold off for now and then add an Alzheimer's prodrome only after the biological tests have proven themselves able to diagnose it accurately.
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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
Why Psychiatrists Should Sign The Petition To Reform DSM 5