Dr. Frances: I am a psychiatrist. I was chair of the DSM-IV task force. I have been quite critical of DSM-5 and concerned about the fact that too many people in the United States are already getting diagnoses and medicine they don’t need. I am worried that DSM-5 will make that worse.
CCPR: What makes you think that DSM-5 will make that worse?
Dr. Frances: There are a number of new diagnoses that will capture millions of people, and existing diagnoses like ADHD have been watered down, so it will be a lot easier for people to get the diagnosis. Twenty-five percent of the American public currently would quality for a mental disorder diagnosis (Reeves WC et al, Morbidity and Mortality Weekly Report 2011:60(03) ;1—32) and 20 percent are taking psychotropic medications (Medco Health Solutions, America’s State of Mind Report 2011: http://bit.ly/17VyHqK). An amazing Canadian study of a million kids showed that the best predictor of ADHD was whether a child was born in December or January, especially for boys. There is almost twice the rate of ADHD in the youngest kid in the class as opposed to the oldest kid in the class (Morrow RL et al, CMAJ 2012;184(7):755-762). Immature kids are being diagnosed with ADHD and often treated with medication. Twenty percent of high school boys in America get the diagnosis of ADHD and 10 percent of high school boys are on medication (Centers for Disease Control and Prevention, 2011-2012 National Survey on Children’s’ Health; http://1.usa.gov/Mb5D9L). This is ridiculous.
CCPR: One of your criticisms of DSM-5 is that the diagnoses don’t necessarily predict a clear prognosis or treatment approach.
Dr. Frances: My point regarding DSM-5 is that you don’t suddenly say that 10 million people have a mental disorder unless you know a lot more, unless you have evidence that that diagnosis is going to be useful. In DSM-5, diagnoses have been accepted on descriptive grounds. But this is not enough. We shouldn’t be adding diagnoses unless we know what the consequences are. The experience of the past is that every time we add a diagnosis it tends to be misused. And in this instance, the most likely misuse will be that people will begin treating it; the drug industry will be involved, and way before we know whether a medication is helpful, people are on medication. In 35 years of working with experts on diagnosis, I have never met one who said, “My area needs to be reduced.” Every expert wants to increase the purview; they always worry about missed patients; and they overvalue the research in their area, and their own research, so the system gets burdened with new diagnoses that are largely untested, just at the very beginning of understanding of whether they are useful or not, and then the unintended consequences come in.
CCPR: For example?
Dr. Frances: We have had a tripling in the last 20 years in ADHD (CDC op. cit) and a 40 times increase in autism since DSM-IV (CDC autism data, http://1.usa.gov/Gi1Nx). We have had a 40 times increase in childhood bipolar disorder (Moreno C et al, Arch Gen Psychiatry 2007;64(9):1032-1039)—even though we rejected the concept of childhood bipolar disorder in DSM-IV—because drug companies and thought leaders trumpet it and convince people that this is a phenomenon. A 40 times increase and a tremendous increase in the use of inappropriate antipsychotics in children. So the diagnostic system has to be protected. We shouldn’t be adding or changing diagnoses unless we know the consequences, and the one thing we have learned from past experience is that a likely consequence of any change is a lot of misdiagnosis and a lot of excessive treatment.
CCPR: You say in your book, Saving Normal, “Child psychiatrists often dare to go where no one has gone before and children wind up paying the price. They keep inventing new ways to wildly overdiagnose psychiatric illness in kids.”
Dr. Frances: Because insurance requires a diagnosis on the first visit, kids get a label that may last for life, and may be irrelevant to their long-term needs. But the labels don’t go away; they cause stigma and they haunt children and they lead to unnecessary treatment. We need to be careful. Diagnosis is a really serious thing and medication is a serious decision that needs to be made much more carefully with much more time and much more expertise. The thing we have to be aware of is that 80% of medications are given out in primary care.
CCPR: If your criticism is really about primary care doctors, why say that child psychiatrists wildly overdiagnose?
Dr. Frances: There are lots of things that are overdiagnosed in our field, but the three things that have come in the last 20 years—ADHD, autism, and bipolar disorder—have all been in child psychiatry and the primary specialties that deal with children. Children are the most vulnerable, there is the least research on how diagnosis and treatment affects them, and we shouldn’t be bathing them in so many drugs without much greater evidence than we have that they will be helpful.
CCPR: You say that Disruptive Mood Dysregulation Disorder (DMDD) is really just a proxy for temper tantrums. Other experts say that this is a diagnosis for those kids who are very disabled but don’t fit the category of childhood bipolar disorder.
Dr. Frances: I think that there needs to be a tremendous re-education in the field about the fallacy of bipolar disorder and the carelessness with which antipsychotic and mood stabilizing medicines have been given to kids with sometimes outrageous consequences. To counteract the drug company conferences, there should have been conferences sponsored by the American Psychiatric Association, child psychiatry groups, pediatricians, and family care practitioners teaching their members that this diagnosis is not official, has gotten out of hand, and led to harmful treatments. The solution of handing down a new diagnosis meant to counteract the problems of the old diagnosis just sets up the new target. The research on temper dysregulation disorder or disruptive mood dysregulation disorder, however it is labeled, is markedly thin.
CCPR: So what do you do with those kids that are clearly in distress, whose families are also distress, but who don’t fall into any of the diagnostic criteria of the DSM?
Dr. Frances: I think the crucial point here is to recognize the value of not-otherwise-specified (NOS) diagnoses. We can’t ever have a system that is going to cover all the great turmoil and great difficulty of human life. But when you make a diagnosis official, it takes on a life of its own and leads to unintended consequences that can be particularly dangerous. I am not against treating with medication a kid who is having all sorts of problems that we don’t have a diagnosis for. But in these situations, I trust the individual clinical judgment of the practitioner to make the NOS diagnosis, rather than having an official diagnosis that makes it sound like we know what we are doing, that we studied it carefully, and that we understand the risks and benefits. Once something gets a separate diagnostic label and a code it takes on a life of its own. For some kids, we should admit our uncertainly. In lots of situations in life we just don’t know what is best, and for those kids it doesn’t make sense to make up a diagnosis if we don’t understand.
CCPR: Is your primary criticism of the DSM-5 process that the consequences of new diagnostic categories were not fully considered?
Dr. Frances: Yes, I think that DSM-IV was meant to be conservative, and even with DSM-IV we had lots of unintended consequences. DSM-5 was ambitiously innovative in an attempt to be prematurely paradigm shifting. It started out with the dream of having a more biological method of diagnosis. When this failed, it reduced the thresholds for defining mental disorders in the hope of stimulating preventive psychiatry. But for none of the new conditions introduced by DSM-5, and for none of the reduction of thresholds for old diagnoses, is there any evidence at all that we can meet the three standards that are important before you can safely make a change. Those are:
1) Accurately identify the patients that are being described or we have a lot of false positives.
2) Have treatments that will help the people you do identify.
3) Ensure that treatment is safe.
For none of the DSM-5 changes are these criteria met. In each instance there will be tons of false positives. There has been no study showing treatment is effective, and in each instance there are risks that treatments that will be used in real life may be harmful.
Because insurance requires a diagnosis on the first visit, kids get a label that may last for life, and may be irrelevant to their long-term needs.
~ Allen Frances, MD
CCPR: What do you propose as a solution?
Dr. Frances: I think that the American Psychiatric Association should no longer be controlling a document that has gained such enormous societal implications—at this point, not just for clinical work but for determining insurance, disability, school services, who goes to prison, who gets to have custody over a child, who gets to fly a plane or buy a gun, and so on. All sorts of things are determined by psychiatric diagnosis beyond the clinical. For safety’s sake, we need a more FDA-type of approach to vetting the diagnostic system. New diagnoses in psychiatry now are much more dangerous than new drugs because they can lead to millions of people being misdiagnosed and getting drugs that they don’t need. Drug companies marketing to consumers, which occurs really just in the United States, needs to end. We need to stop the idea that drug companies can market diseases the way they market beer or cars. I think the insurance industry needs to have a different perspective. They created a requirement for a diagnosis on first visits thinking that this would be a screen that would reduce costs. In actual fact, over the long run it greatly increases costs. It would be much better to have a moratorium period early in evaluations where you didn’t have to have a diagnosis—where it is just an evaluation visit. Parents and consumers need to be better educated about the risks as well as the benefits of psychiatric diagnosis. I think the really tragic thing is the misallocation of resources. We are spending billions of dollars on unnecessary medication for people who would do better without it. At the same time, we have a million psychiatric patients in prison for nuisance crimes that would have been avoided had they had adequate community treatment and housing. We have closed a million psychiatric beds in the last 50 years, and not so coincidentally, we have opened a million prisons beds for psychiatric patients (US Department of Justice, Bureau of Justice Statistics Special Report 2006; http://1.usa.gov/17nLjdm). The NIMH shouldn’t just be a brain institute advocating for brain research that may help people in the future. Past experience shows that the translation from basic neuroscience to helping patients in a practical way is painfully slow.
CCPR: Thank you, Dr. Frances.
Dr. Frances is the author of The Essentials of Psychiatric Diagnosis (Guilford 2013) and Saving Normal (HarperCollins 2013).