Part I of a Two Part Series
For the fourth time since 1952, when the first edition appeared, the American Psychiatric Association (APA)* is again revising its diagnostic manual. Who cares, some may ask? Seems like a lot of people do care -- and should. Is there dispute about what is being drafted, and how it is being done, by this organization of 38,000 member psychiatrists? Indeed.
The DSM-5 is shorthand for the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition. The APA began revising the 4th Edition (which had undergone some minor revisions and thus was called DSM-IV-TR) in 2000 with the goal of releasing the 5th Edition in 2011 (when the international coding system for billing was due to change -- see below). Estimates now are that it will appear in 2013. It has been 20 years since the last full revision and one is overdue. The DSM is a hefty tome that specifies 283 mental illnesses, categorized by disorders, including mood, anxiety, eating, sleep, personality, impulse control, adjustment, substance-related, schizophrenia and other psychoses, delirium and dementia, developmental impairments and others. It also provides a system for adding the presence of general medical illnesses as well as ratings of functioning and stress.
Were you to open the book to a particular illness, say depression, you would see a list of symptoms (for depression these include sleep and appetite problems, difficulty concentrating, sadness and guilt) whose presence must be met for a specific duration of time for a person to warrant that diagnosis. You would be instructed to ensure that the condition you are observing is not due to something like thyroid disease or a drug that depresses the central nervous system -- both of which can cause depression and would require different treatments. You would learn something about the course and prognosis of the illness but would read nothing about what causes the illness, nor would you find information about specific treatments. The DSM has eschewed, to date, delivering information about the causes and therapeutics of mental disorders. Instead, its goal for decades has been to characterize the signs and symptoms of an illness with enough clarity and specificity that mental health professionals around the world observing the same condition would arrive at the same conclusion about what they are seeing; this is called reliability and has been the DSM's grail.
With a common descriptive language for making a diagnosis, psychiatry would ensure that treatments were properly matched to a condition (for example, for depression and not bipolar disorder, just like you wouldn't want to be treated for asthma if you had pneumonia). Plus it would be possible for researchers to compare treatments, over time, to better know what worked for what condition. Clinicians in Europe, South and North America, Africa, Asia, wherever, would be talking about the same conditions with a common language that would also reveal rates of the condition, wherever it appeared. Over time, the hope was that the DSM's diagnostic precision would uncover the risks, protective factors and causes of different mental illnesses.
There are four reasons (at least) why diagnosis, and thus the DSM, matters:
1. Most public and private payers in the U.S. healthcare system only reimburse for treatment of psychiatric diagnoses formally recognized in DSM (though having a diagnosis does not ensure insurance coverage or payment). Our medical care system, be it for psychiatric conditions or any illness, is based on diagnosis. You can only be admitted for care in a clinic, doctor's office or hospital if you have an illness, which means you have a diagnosis. In short, no diagnosis, then no treatment and no payment. In fact, FDA approval for the treatment of a medication for a psychiatric disorder requires that it be listed in the DSM: no diagnosis, no drug approval.
2. There would be no way to judge the quality of medical care were there no diagnoses. Neither patients nor medical teams could know whether a treatment is effective for a particular condition without a diagnosis, nor would they be able to customize treatments by dose, duration, safety and side effects, age, race and ethnicity, acute or chronic care, and the like. Quality is the appropriate provision of the right treatment for a specific diagnosis - sometimes described as doing the right thing right.
3. Diagnoses can provide socially acceptable reasons for not functioning as normally expected. To wit: he has had a myocardial infarction and will be out of work for a month; she has influenza and cannot attend classes; she has a serious depression complicating her diabetes and cannot attend to her family and work because she must enter the hospital for care for both conditions. Moreover, disability and entitlement programs (like Medicaid and Medicare) require a diagnosis for a person to be eligible for support a person might not otherwise receive.
4. There are those who say diagnosis makes a difference in reducing the stigma that people with mental illness experience. Maybe, for some, having an understandable medical condition does help reduce harsh judgments by others; depression may have achieved that standing, as perhaps has PTSD. For other disorders, like schizophrenia and bipolar disorder, as some of my colleagues have said, it will be their effective treatment, especially reductions in frightening or socially disruptive behaviors, which will actually reduce stigma.
In sum, diagnosis makes a big difference. So, we better get it right. Enter the APA and their effort to get the DSM more right after 20 years of stasis. The APA constructed 13 work groups, over 160 people, to revise the DSM, along with review and critique by the APA's internal committees, councils and board of trustees.
In an effort to publicly share progress in DSM-5 development and solicit feedback from the manual's users, the APA posted online their draft material and twice invited comments; their website has received over 7 million visitors, 40 million hits, and 10,000 comments. Potential members of the drafting teams were required to fully reveal and divest themselves of any potential conflicts of interest (e.g., industry consultations, stock ownership, or helping to market a medication) before being appointed. This set the process back by some time, but created an unprecedented level of transparency. Now, field trials have begun at 11 academic medical centers throughout the country with a variety of mental health professionals. In addition, real-world office practice sites will soon begin trials by psychiatrists, psychologists, social workers, nurses and counselors. The APA is working with the World Health Organization (WHO) to set up field trials in primary care settings.
In short, a great many experts are creating the latest DSM while being subject to professional and public scrutiny of their motives and their product, and it is about to be test-driven in hospitals and offices to see how it works. The iterative and open DSM-5 development process has and will permit continuous improvements along the way. Yet none of this guarantees excellence, though it fosters it and allows for a more trustworthy process.
Criticism has especially collected about delays and public perception. The already two-year deadline extension has taken a lot of attack -- despite explanations about the workgroup membership vetting and need for sophisticated field trials. Yet the really critical deadline lies ahead (October 1, 2013) in time for the DSM-5 to be linked to the ICD-10-CM (the International Classification of Diseases, 10th edition - U.S. Clinical Modification). The ICD is a disease coding (billing) system produced by the WHO, modified by the U.S. Federal Government, and required for all Medicare, Medicaid, and private insurance claims. In other words, the DSM provides diagnostic criteria and the ICD provides billing codes: both are actually needed for medical business to be done. Ironically, if the DSM-5 had been published in 2011 (using current ICD-9-CM codes) it would have to be republished with the new ICD-10-CM codes in 2013! Unintended delays, in fact, have resulted in a synchrony that will enable clinicians and administrators to have the new diagnostic system and the updated billing codes arrive at the same time. And they would not have had to buy a DSM in 2011 and an updated one in 2013.
The APA was also trumped for a while in communications about the DSM by experienced experts, Dr. Allen Frances, the editor of DSM-IV in particular, who has been critical of virtually all aspects of the DSM-5 development process. His initial critique left the APA looking flat-footed about what it was doing to make things right.
These are serious issues. But they are not being ignored. Time will tell if they will be properly corrected. The DSM-5 development process has been less than perfect. The final DSM-5 product could be at risk for not being as clinically meaningful and usable as it needs to be. As for the former, I am reminded about what Churchill said about democracy: "... the worst form of government except {for} all the others that have been tried"
As for the latter, more about the product in Part II of this series where I will discuss the actual diagnostic and content changes proposed for the DSM-5. These include a new category of behavioral addictions; revisions in disorders of development previously described as mental retardation; far more about mental disorders affecting children, including considering introducing what is now called 'risk syndromes' to foster early identification and intervention; a focus on the co-occurrence of disorders, which is often more the rule than the exception; and 'dimensional assessments' which are basically means by which clinicians can evaluate the severity of a person's condition and monitor if treatment is working -- to name a few. Will the 5th Edition exonerate itself from its critics? The world of mental health needs that to happen.
For more information see the DSM-5 website: www.dsm5.org
*Disclosure: I am an APA member. I have held numerous elected state and national positions at the APA, worked there from 2000-2002, and currently sit on the Council on Research and Quality Care.
The opinions expressed here are solely my own as a psychiatrist and public health advocate. I receive no support from any pharmaceutical or device company.
Visit Dr. Sederer's website at for questions you want answered, reviews, commentary and stories -
www.askdrlloyd.com