Tuesday, August 4, 2009

DSM-V Transparency: A Case Study

Last month, I wrote a few posts on the ongoing controversy about DSM-V, which is the next version of psychiatry's "bible," the Diagnostic and Statistical Manual. A quick recap: Dr. Allen Frances, the chair of the DSM-IV task force (who was shut out of the the DSM-V task force) wrote a scathing editorial for Psychiatric Times in which he questioned whether there has been sufficient progress in psychiatry to merit significant changes in the manual. The APA responded with a rebuttal, and so on.

Underlying these tiffs is something that must now be regarded by most APA leaders as a mistake: the early decision to require that DSM-V task force members sign a "confidentiality agreement." Drs. Regier and Kupfer maintain that this was merely a kind of "no-compete" clause to prevent task force members from writing and making money off their own versions of DSM. But Dr. Frances said the agreement was part of DSM-V’s “inexplicably closed and secretive process.”

Confidentiality agreement or not, as it turns out, there are glimpses of complete DSM-V transparency here and there. Take a look at this web page from the excellent Schizophrenia Research Forum website. Entitled "Live Discussion: Is the Risk Syndrome for Psychosis Risky Business?", this describes in detail the proposal for a new disorder called "Risk Syndrome for Psychosis." You can access the proposed criteria for the disorder, including the text discussing characteristics, associated features, differential diagnosis, etc.... So far, there are 23 comments posted, constituting a rigorous debate about the pros and cons of the proposal.

At this point, the diagnosis may or may not make it into DSM-V. It really depends on whether there is strong enough research indicating that treatment of early forms of psychosis can head off the later development of schizophrenia. My understanding is that the research is unconvincing, but I'm willing to defer to these specialists, who clearly know a lot more about psychosis than I do.

The point is not so much whether "Risk Syndrome for Psychosis" ends up winning a coveted spot in the DSM-V pantheon; rather, the point is that here is a case study of complete transparency, and it doesn't hurt one bit. In fact, it works exceedingly well, because it lets everyone in on the psychosis work group's thought process and it invites comments on a specific proposal. Where's the beef? It's here.

Unfortunately, if you go over to the DSM-V website and look at the official "Report of the DSM-V Psychotic Disorders Work Group," all you'll find is a very brief summary of some of the topics under discussion. The only mention of the Risk Syndrome for Psychosis is telegraphic: [One issue being considered is] "adding a risk syndrome section to DSM-V and including risk for conversion to psychosis as a category." There isn't even a link to Schizophrenia Research Forum website.

The same level of detail (ie., almost no detail) applies to the other work group reports as well. In their rebuttal to Frances, the APA leadership maintained that "the process for developing DSM-V has been the most open and inclusive ever.” Apparently they were referring to various presentations at conferences. If they want to be credible, I suggest they instruct the chairs of each work group at least to post links to all web pages containing specifics of proposed disorders. That would be true transparency, and it would make a lot of disgruntled psychiatrists happy.


Gina Pera said...

Great points, Dr. C.

Here what comes to mind when I ponder the perceived need for secrecy:

1. "No one but us psychiatric specialists in X area will understand this information, so why muddy this rarefied water by admitting the unannointed?"

2. "We're tired of the wingnuts' DSM conspiracy theories and the cowboy journalists who take their bait; why leave ourselves open to their whacko attacks?"

For anyone who is interested, the research underlying proposed criteria for Adult ADHD is an open book. It's called ADHD in Adults: What the Science Says, by Barkley, Murphy, and Fischer.

Sara said...

Gina, It's all very well to present lots of "science" about ADHD in Adults but unless it's accompanied by equally detailed science on the current psychopharmacological remedies that are being used to treat it I'm not convinced of the objectivity. In my experience Russell Barkley buys into every drug ever devised to treat ADHD hook, line and sinker with no nod to the risks so I'm not very interested in his theories on the disorder. Just how much money were those authors getting from pharmaceutical companies at the time they wrote the book?

And as for "Risk Syndrome for Psychosis" this isn't really a debate about whether it exists or not, but just how to define it and what to do about it. There seems to be quite a dread of making it too easy to diagnose. Can we just step back (outlier that I am) and think about it from the patient's point of view?

In some people who eventually become psychotic, probably in most, there are clues beforehand that this eventuality is in the works. Some people become psychotic as the result of some catastrophic event but for others it's something that creeps up on them as a result of stress and perhaps some ongoing trauma inducing circumstances. Their coping mechanisms falter; their thinking becomes disorganized. All in all it would be a good thing if someone could step in and help these people before the psychosis blossoms into a full fledged dissociation from reality, but what is the real way to help these people?

It's not by labeling/diagnosing them and telling them they're at risk of full blown psychosis. That's a self-fulfilling prophecy. And it's not really by medicating them for some indefinite period because most antipsychotics simply blunt the patient and then lead to rebound and exacerbation of symptoms down the road if and when the drug is removed. No, the way to help is by seeing if something can be down to modify the stressors and/or help the person cope by reframing how they view what's going on. Unfortunately this is not what the DSM is about. It's all about expanding chronic treatments and getting insurance coverage, not about helping people live their lives in a healthy, resilient fashion. It's a tool for industry and the profession but not really a big help for the patient.

Gina Pera said...

I apologize, Sara, but I really don't understand your point.

As for your "experience" of Russell Barkley, I'm not sure what that means, either. Have you attended one of his lectures, read his books, etc.? Are you a professional who is educated in understanding these issues and parsing studies?

I wonder if your perception parallels that of other laypeople who criticize researchers in other medical/psychiatric fields of study.

(Excuse me while I mention again an ADHD-related example; it's the only psychiatry area where I have knowledge and experience. But it is a general point I'm making.)

I had the pleasure of attending Dr. Barkley's presentation at the CADDAC (Canada non-profit advocacy for ADHD) conference in Toronto. The audience of several hundred adults was spellbound by his eloquence, his profound grasp of the subject in all its complexity, his compassion for people who have ADHD, and new findings he shared on neuroanatomy and ADHD.

Then I chatted with one woman afterwards who said, "He sounded like a pharma salesman." This despite a small fraction of his talk even touching on medication.

This woman had ADHD and so did her three young children. All three were experiencing what sounded like significant social and physical fallout (untreated ADHD can have a huge impact on sleep, diet, and more). Yet, she refused to consider medication for herself or her children, and she was convinced that their mental/physical problems came about because she'd eaten fish from the North Sea that was tainted with mercury. She'd eaten it every day, she pointed out. She was equally convinced that their problems could be cured with diet, though despite many efforts she'd not found such a miracle cure.

That's her choice, of course, but anyone who could sit through that presentation and produce only that flip remark obviously could not pay attention or is deeply oppositional. (Sort of like the "birthers" who can't understand complexity and hyperfocus on that.)

In short, this is one example of the type of person who cannot see past "DANGER PHARMA" to the deeply impressive body of work by Barkley et al. No wonder researchers in ALL areas of psychiatry have gotten gunshy about dealing with the public or the media. Ignorant reactions such as that, which say more about the person's distorted thinking than the reacher's embrace of medication, have a chilling effect. And of course, their colleagues' shady behavior has not helped.

"Follow the money" is a useful slogan only for those who can process complex issues without preconceived bias and with fully cooperative executive functions. For the rest, it's a way to reduce complexity to useless simplicity.

Shoulda_Woulda_Coulda said...

In reference to Sara's comment...

I'm not a psychiatrist, but I've seen many of them for schizophrenia. I have no idea what caused my schizophrenia. I've been taking medication since I was 19. I've had to rebuild my life twice due to relapse. I make it through life, but there are some aspects in life that are hard for me, that don't cause difficulty for my friends and spouse.

My mom tells me that I started to act a little "strange" when I was about 16. I remember having some warped dark thoughts, but I don't think I was psychotic then. I had my first incidence of psychosis when I was 19. I was started on an antipsychotic and antidepressant. Due to the psychosis, I attempted suicided and ended up in the ICU then a phych unit. I have been on medication since then.

As was mentioned by Sara, my treatment is based on medication, which is very expensive. They do help, but I have to take them as prescribed even when I feel ok, otherwise I relapse within 1-2 months.

I know there are people much worse than me and I truly feel for them. Schizophrenia is awful and I wouldn't wish it on anyone. I know people who can't even function with a ton of medication and social support. They spend their days in group homes and other supported living environments. They feel ashamed that they can't live on their own. They don't like the fact that their day is dictated by someone else...that they can't do what they want, when they want. I just can't imagine living like that. I've also met people who live on the streets who have schizophrenia. They're so far out there they don't even know they're out there. I'll stop and talk to them, to the dismay of my friends (it makes them really uncomfortable when I stop and talk to "weird, dirty, homeless people"). I don't know how to help them, but it makes them smile when I talk to them for a while...a smile is at least something. I've been fortunate because the worst it's been for me is losing jobs, hospitalizations and having to move back home.

If there is some way that a doctor could accurately say early on, "We think you're at risk for developing schizophrenia. This is what we can do to intervene." Just think what impact that could make!

I do agree with Sara, that probably all they'll do is give people a medication cocktail. That might help, but it isn't the complete answer. I think Sara is totally right that coping mechanisms fail. When I'm really stressed for a while...the next thing I know, "my friend is telepathizing with his cats." My doctors have told me that my stress levels affect my schizophrenia, but none have ever told me that I have a faulty coping mechanism. I just get more medication. More Zyprexa for me...and a little Seroquel for while, too.

I may not understand the intricicies of the DSM-IV and the upcoming DSM-V, but I do know that if there is some way to intervene and prevent the development of fullblown schizophrenia, that is a God-send and it should be utilized to the fullest extent possible. But, that's just coming from a patient...a person who has lived with schizophrenia for the better part of her life.

If it's over-diagnosed and people are put on antipsychotics unecessarily, that's not a good thing. Antipsychotics aren't a joke and if it weren't for the fact that they helped me I most certainly wouldn't put them in my body! The thing with psychiatry is that there are no "tests." You can't do spirometry or a cholesterol test. So, how do you guarantee that you aren't giving these medications when they aren't needed? Who wants to be 16 and given Zyprexa and end up on a cholesterol medication and 40lbs overwieght because they "might" develop schizophrenia? Prevention is a wonderful idea...I'd love for my psychiatrist to have done that when I was 16!

Steve said...

What to say? I have ADHD and am 43, just recently diagnosed. Watched barkely's lecture in Toronto in full and found i informative, fascinating and grateful that someone in he profession appears to fully understand my problems and relate to the profound impairments the condition has had on my life.

I hate the fact that it is ever present and not episodic like depression and believe that to be a major reason why I did no recognise anything was wrong myself up until recently. But like the Professor, I am extremely grateful that the condition is relatively treatable with drugs and have enjoyed the last three weeks of first being on medication and thus feeling close to what it must be like to be "normal". he real agenda here is a) people doubt the validity of the condition (please change the name to something more convincing) and
b) People are scared because the drugs used here have an association with street drugs

Both a) and b) are born out of ignorance which I always considered to be the antithisis of science.