didn’t need to happen…

Posted on Friday 17 August 2012

The DSM is a medical code book, a way of representing an illness as a symbol. With the coming of third party payers, there’s an added dimension – covered or not covered by insurance. With time, there came to be another dimension standardizing the specifics of that coverage. These latter dimensions are determined outside of medicine, but add a powerful valence to the encoding system. To my way of thinking, the success of the atheoretical, descriptive, reliable DSM-III and DSM-IV largely rested on their compatibility with the requirements of the third party payers. I think of this dimension as legitimacy. It’s the elephant in the room, the very big thing that isn’t talked about directly. The reason the DSM is used by all of the other mental health disciplines is that it standardizes and legitimizes mental illness.

So we’ve reached a point in time to decide whether the DSM-5 revision due to be published in less than a year is acceptable as it stands. It was introduced a decade ago with this book – A Research Agenda for the DSM-V:
    In the ongoing quest to improve our psychiatric diagnostic system, we are now searching for new approaches to understanding the etiological and pathophysiological mechanisms that can improve the validity of our diagnoses and the consequent power of our preventive and treatment interventions venturing beyond the current DSM paradigm and DSM-IV framework. This thought-provoking volume produced as a partnership between the American Psychiatric Association, the National Institute of Mental Health, the National Institute on Alcohol Abuse and Alcoholism, and the National Institute on Drug Abuse represents a far-reaching attempt to stimulate research and discussion in the field in preparation for the eventual start of the DSM-V process, still several years hence. The book:

    • Explores a variety of basic nomenclature issues, including the desirability of rating the quality and quantity of information available to support the different disorders in the DSM in order to indicate the disparity of empirical support across the diagnostic system.
    • Offers a neuroscience research agenda to guide development of a pathophysiologically based classification for DSM-V, which reviews genetic, brain imaging, postmortem, and animal model research and includes strategic insights for a new research agenda.
    • Presents highlights of recent progress in developmental neuroscience, genetics, psychology, psychopathology, and epidemiology, using a bioecological perspective to focus on the first two decades of life, when rapid changes in behavior, emotion and cognition occur…
When I was looking at this topic in May [dreams of our fathers VII…], I wrote:
    David Kupfer and Darrel Regier came on the scene in a peculiar relationship to the dreams of their fathers. On the one hand, they espoused the dreams of their St. Louis fathers [Eli Robins and Samual Guze] of putting psychiatry on a firm biological footing ["understanding the etiological and pathophysiological mechanisms that can improve the validity of our diagnoses"]. On the other they fairly consistently said they were going to transcend the dreams of their other fathers [Robert Spitzer, and Allen Frances] of simply improving the reliability of the current descriptive classification ["venturing beyond the current DSM paradigm and DSM-IV framework"]…
Recall that the DSM-III and DSM-IV were based on three tenets: no a priori principles, descriptive criteria, and reliability. The first two were conceptual, designed to rid the system of any particular theories of causation and postulated mental mechanisms. The last was the one that mattered – reliability. In practice, that meant kappa, a measure of inter-rater concordance [box scores and kappa…]. In the absence of concrete parameters [like the biomarkers of physical medicine] that would allow declaring validity, they substituted a measure of reliability. These DSM-5 revision leaders proposed to move our diagnostic system up a notch:
    "… now searching for new approaches to understanding the etiological and pathophysiological mechanisms that can improve the validity of our diagnoses…"
They apparently thought that they could move beyond reliability and shoot for validity after all. The book was the research agenda designed to acquire the necessary confirmation to make that change. The no a priori principles tenet was obviously not going to be a part of this particular effort. A biological causation and pathophysiology were assumed.

The DSM-III was much bigger than a simple code book. It was the tool that changed the landscape of psychiatry and the rest of mental health by transcending the debates about what we don’t know [the etiology of the mental illnesses] and sticking only to what we do know [symptoms and syndromes] and by substituting something we can measure [reliability] for something we can’t [validity eg biological markers]. Awkward in its best moments, it nonetheless fit the unspoken requirement of legitimacy.

I don’t think the people in charge of this revision were thinking much about legitimacy when they set their course. It was the end of the NIMH’s Decade of the Brain, and the beginning of a new century. Neuroscience and psychopharmacology were the ascendant paradigms and the pharmaceutical pipeline was continuing to supply a steady stream of new drugs. They seemed to have no clue that they were headed into a decade of disillusionment. In the context of Dr. Spitzer’s DSM-III and Dr. Frances’ DSM-IV, there were some things that badly needed doing. The biggest diagnosis of all, Major Depressive Disorder, was in urgent need of attention. It meant something specific in the book, but in doctors’ offices it just meant "depressed" – opening a conduit for the widespread over-prescription of antidepressant and other medications. The DSM categories had become the basis for FDA approval and the phenomenon of "indication sprawl" was an escalating problem. Autism, ADHD, the Bipolar Child badly needed clarification. And then came the waves of scandal as the extent of the pharmaceutical industry’s invasion of psychiatry began to be exposed: conflicts of interest, ghost-writing, guest authorship, false and off-label advertising, schemes like TMAP, hidden adverse effects, inflated efficacy reporting, payola at high levels, and more.

The DSM-5 Task Force ignored the dramatic changes in climate, keeping to its dreams of validity well beyond any hope of achieving them. They seemed to passively ignore improving reliability. Instead they occupied themselves by adding unproven things like the attenuated psychosis syndrome or perseverating on new complexities like cross-cutting or dimensional whatevers. When their predecessors, Drs. Spitzer and Frances, realized what was happening and raised the alarm, they were rebuffed as interfering has-beens. The Task Force began their quest by reframing their task based on a contemporary exuberance, relying on a wished-for trajectory of future discovery. They didn’t change gears along the way in spite of repeated warnings. Dr. Frances was able to mobilize enough force to quash some of their more speculative proposals, but he couldn’t redirect them to focus on reliability. Here at the end of the road, they were finally forced to report no progress in validity, and their benchmark for reliability, the Field Trials, were a disaster [all quiet on the western front…].

The wisest course of action would be to take a step back and do the revision that was needed in the first place under new leadership. If they move forward as expected, the best they can look for is a tepid response and inertia supported only by former usage. They risk facing a major boycott with their base turning to the alternative International Classification of Diseases [by treaty, the official code book]. If history is kind, this story may some day fit into a larger, inevitable context that makes it make sense. Right now, it just looks like a major screw-up from the get-go by arrogant people that just didn’t need to happen…
  1.  
    August 17, 2012 | 2:20 PM
     

    Mickey,
    I have just discovered your blog in the last few days. I’m drinking it down like water in the desert. I’m an ageing but still working psychiatrist who came of age professionally just as Robins and Guze were making their overly successful push. I have been wishing I could find the time and the strength of will and the organizational skills to pull together all the strands you are so effectively pulling together here. For instance, the opening paragraph of this post, on how DSM functions as a tool of legitimation, is a gem of condensed and clear explanation.

    I’m going to keep reading. I’m glad you are devoting so much of your “retirement” to this. I’ll be reposting and enthusiastically recommending lots of your stuff on my nascent blog.

    Keep up the very important work.

    Gene Combs

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