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Dr. Allen Frances: January 2012 Archives

January 2012 Archives

DSM-5 And Diagnostic Inflation: Reply To The DSM-5 Task Force

By Dr. Allen Frances on January 31, 2012 4:41 PM   |   Comments   |   Bookmark and Share
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.

DSM-5: How Reliable Is Reliable Enough?

By Dr. Allen Frances on January 24, 2012 2:42 PM   |   Comments   |   Bookmark and Share
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.

Is DSM-5 A Public Trust Or An APA Cash Cow? Commercialism And Censorship Trump Concern For Quality

By Dr. Allen Frances on January 6, 2012 1:32 PM   |   Comments   |   Bookmark and Share
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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