The Book of Woe: The DSM and the Unmaking of Psychiatry (24 page)

He was right about that.

But, First continued, a problem much more important and easier to grasp could be seen in the unevenness of the APA’s proposed changes. Take Intermittent Explosive Disorder, for example. “It’s one of the few disorders for which there are no changes proposed,” he said. “Is that because the criteria for IED are so sound that there is no need to change them?” (IED, which got its initials before the war in Iraq made them piquant, is pretty much what it sounds like—a propensity, mostly among children and adolescents, to become quickly and unpredictably enraged, and then quickly return to normal.) He pointed out that IED is one of those “socially constructed, I-don’t-know-what-it-means” diagnoses, one that you would think any major revision would reconsider. But, he explained, no one on the work group seemed interested in IED (or, he added, in two other impulse-control disorders—kleptomania and pyromania). It wasn’t anyone’s pet project, so the criteria had been left unmolested.
*

On the other hand, he continued, consider Specific Phobia, described in the DSM-IV as a “marked and persistent fear cued by . . . a specific object.” There was apparently no shortage of experts interested in this one, with the predictable result. First flashed a PowerPoint slide on which he had highlighted the differences between the existing and the proposed criteria. The text was a jumble of cross-outs and underlines. “Marked and persistent fear that is excessive or unreasonable, cued by the presence or anticipation of a specific object” had become “marked fear or anxiety about a specific object or situation.” An entire criterion—that the patient recognize the fear as excessive or unreasonable—had been deleted in favor of a requirement that the clinician determine if it is out of proportion to the actual danger (but only after taking into consideration the “sociocultural context”). “Avoidance, anxious anticipation, or distress” had become “fear, anxiety, or avoidance.”

An expert flaps his mouth in New York or Washington, and chaos breaks out in Peoria—an outcome made more vexing, First pointed out, by the fact that these changes seem to be made for the sake of change, to fix diagnoses that aren’t broken. “Why did this happen?” he asked. The answer lies not in science, but in sociology, in what he called the
work group effect
.
“If you get a group of people doing weekly conference calls for three years, you are going to get lots and lots of changes,” he said. “We’re dealing with human nature here. Why would someone clamor for a position where they spend five years of their lives doing a lot of work for nothing? The reward is to get your view of the world embedded in the DSM.”

•   •   •

It’s Monday, the third day of the annual meeting, and the AAPP conference is over. First has settled into a seat to watch
Kupfer and Regier demonstrate
⁷
how they expect clinicians to use the DSM-5 to reach diagnoses, or at least how they will do it in the field trials. This will also be their first opportunity to show off their long-anticipated dimensional assessment methods and perhaps answer some of the questions about proposals such as the move to eliminate Asperger’s.

The room is set up for a couple hundred people. About twenty-five have straggled in. If Regier is disappointed by the turnout, he’s not saying. Neither is he waiting for latecomers, although he might privately be cursing the scheduler who put this workshop on at noon, the hour at which drug companies like to put on shows while psychiatrists enjoy their box lunches.

You can’t blame him for wanting to get started. For nearly two years, he has been responding to worries about the unreadiness of the new criteria and the unwieldiness of the dimensional assessments with some version of the response he gave me in September 2010 when I repeated those charges: “
That’s why we are doing a field test
⁸
,” he said, and he added that the trials would begin soon.

A month after that conversation, on October 5, the APA sent out a press release. The field trials had started, it declared, and it described “
two rigorous study designs
⁹
.” In one, to be conducted at eleven medical centers across North America, two different clinicians would use the new criteria and the dimensional measures to independently evaluate the same patient. To the extent that they agreed, the diagnoses would be seen as reliable. Videotapes of their work would be reviewed by a third clinician, this one considered an expert, to see if either or both of them had come up with a valid diagnosis. The participants would then rate the usefulness of the new procedures. In the second design, called the Routine Clinical Practice (RCP) trial, 3,900 mental health professionals in private offices would evaluate two patients, also using the new criteria and dimensions. They would repeat the procedure with the same patients a couple of weeks or so later, and the results would be compared. The information generated from the two studies would be fed back to the work groups, who would tweak the criteria accordingly and return them to the field trialists for a second round of testing. “Field trials will give us the information we need to ensure the diagnostic criteria are useful and accurate,” Regier said.

The release didn’t mention that the field trials were already five months late. But that’s not all it left out. It also failed to say what Regier had to admit when I asked him directly the next day: that they really hadn’t begun at all. What had started was only a pilot study designed to shake the bugs out of the protocols for the medical center trials. This research had to be finished, its data analyzed, the methodology modified according to the findings, and the clinicians trained before the field trial itself could begin in earnest. He couldn’t say when this would happen or, for that matter, when the 3,900 practitioners—a number that would soon go up without explanation to 5,000—in the routine practice study would get their marching orders.

In that October conversation, Regier also told me he didn’t understand what all the fuss was about. “
I’m surprised
¹⁰
that the . . . statement would be considered news. Perhaps we should have a daily tweet.” It was as if he didn’t know that it was his people who had called it a “news release” or that just the previous day, they had quoted him calling the field trials a “critical phase” in an “important process.”

The field trials did eventually get under way. Or at least the academic center studies did, with the first opening for business just before Christmas 2010, and the last coming on line in March 2011—nearly a full year past their scheduled start. But even as we convened in Hawaii, the RCP trial had yet to start, and no one was saying when it would. Allen Frances had made the predictable hay of the slipping schedule, adding it to the litany of what he called disarray and disorganization, his tone—“Missed Deadlines Have Troubling Consequences,” in case that wasn’t obvious—becoming increasingly high-handed. In the meantime, it was safe to say that the field trials had not yet won over a single heart or mind.

So no wonder Regier is eager to strut the APA’s stuff. I’m sure he’d like us to go back and talk them up to our colleagues, maybe even tweet the virtues of the new criteria and the dimensional measures. I am also eager, as I have signed up to be one of the RCP trialists, and this session will be my first chance to see what I’ve gotten myself into.

“Of particular value to us is feedback from clinicians about how useful these [assessments] would be in your practices,” Regier is saying. And the feedback starts right now, he tells us, thanks to the electronic keypads, about the size of a television remote control, on the tables in front of us. “Let’s try these out with a question, and you’ll see how they work when an entire audience uses them.”

The entire audience, which by now has swelled to at least thirty-five, grab their clickers. The question comes into view on the PowerPoint screen.

Which of the following productions was not filmed in Hawaii?

A.
Hawaii Five-O

B.
Baywatch

C.
Jurassic Park

D.
Indiana Jones and the Raiders of the Lost Ark

“There’s supposed to be music,” Regier says, and looks at the tech guy, who flips a switch. A steel drum song breaks out on the speakers. Which seems a little more “Hey, mon,” than “Aloha,” but Regier doesn’t seem to mind.

We cast our ballots, and as soon as the calypso stops, percentages for each answer pop up on the screen.
Baywatch
leads the way. “Fifty percent of you know your TV series,” Regier says.

Regier explains what is about to happen. Emily Kuhl, an APA staffer, and William Narrow, the psychiatrist in charge of research for DSM-5, will be reenacting a session that occurred some weeks ago. Kuhl will “channel” the patient, Regier explains, while Narrow conducts his “regular clinical interview.”

Narrow begins by telling us that the patient’s name is Virginia Hamm. The lame joke falls flat in the empty room. Bearded and balding, Narrow is laconic, even shy, and not a natural showman; he looks like he’d rather be almost anywhere else than on this, or any, stage. Virginia, he continues, had come to the clinic and been assigned to a computer. She’d typed in her demographics and described her chief complaint
as Obsessive-Compulsive Disorder and depression. She had filled out the Cross-Cutting Measures, Levels 1 and 2—the dimensional measures designed to assess symptoms that are not necessarily part of the diagnosis. She had indicated how regularly she felt “irritated, grouchy, or angry” or “nervous, anxious, frightened, worried, or on edge,” how often she heard voices or thought of hurting herself, whether she sniffed glue or drank alcohol, or if she had ever found herself “not knowing who you really are or what you want out of life.” She’d clicked through the items on the Altman Self-Rating Mania Scale and the Patient Health Questionnaire—Somatic Symptom Short Form, and the PROMIS (Patient Reported Outcomes Measurement Information System) scales for anxiety and depression. She had confided in the computer about her “getting along with people and participation in society,” about her “communicating/understanding,” her “getting around and self-care and life activities.” After about a half hour of pointing and clicking, she had pushed the last button, sending the information to another computer, this one at Vanderbilt University, home of the REDCap (Research Electronic Data Capture) system, which had tabulated the answers and generated a report, returning it at the speed of light to her clinician. We are holding a printout of the results in our hands, a thick sheaf of papers telling us what is wrong with Virginia Hamm, if not how to cure her.

Narrow is going through the results out loud. “Two point nine on the depression measure, anxiety score is in the moderate range, somatic symptoms score is zero, suicidality is one,” he reads from the laptop sitting on the table between him and the fake Virginia. “No reported problems with cognition or memory. Emotionality above average, antagonism is above average, disinhibition is below average, schizotypy is below average.”

Narrow seems a little tentative about what to do with this information. He tells us that it isn’t exactly diagnostic, because it doesn’t correspond to DSM categories, and it isn’t exactly a screening device; it is only supposed to help direct the clinician’s attention to certain DSM categories. But he is short on the details. It might be that his regular clinical interview, like mine and that of most of the therapists I know, doesn’t usually involve a laptop and a fake patient and an audience and a computer printout. Still, he seems more uncertain about what to do next than you’d expect from the guy who is in charge of the research.

He seems particularly unsure about how long this is going to take. “If I start running out of time,” he says, “we’ll just need to cut this short, but I will try and do as much as I can of the high points of the interview.” He looks at a cluster of four or five women in the front row, APA apparatchiks apparently. They seem to know something, and if it had to do with the possibility that a ninety-minute session is not sufficient to demonstrate the clinical trial, I realize that I might have made a mistake—not by coming here instead of going to lunch, but by signing up to do four of these interviews and thus committing six or more nonbillable hours to the DSM-5 cause. I wonder what is going to happen when my 4,999 fellow trialists, most of whom, or so I imagine, are busier and charge more money than I, do this math.

“Okay, Miss Hamm,” Narrow says. “I’m glad you’ve consented to do this study for us. It’s a very important study and will help us to develop a new DSM.” He asks what has brought her to the clinic, and she tells him what she has already told the computer about her OCD and depression. “Why don’t we start with the OCD?” he asks. She tells him about how she couldn’t throw anything away, especially not newspapers, how years and years of them have at times accumulated in her apartment.

“Were most of the rooms filled with things?

“Yeah.”

“
Filled
filled?”

She assures him that she left paths between the piles, but even so, one day her brothers showed up at her apartment and tossed her stash into a dumpster they had rented.

He wants to know what that was like “emotionally.”

“I was shocked,” she replies. “It’s stressful, you know, watching them take my stuff out. But we decided it’s better to throw away two good things than to leave ninety-eight things that aren’t so good.” And indeed, she added, while the brothers had to repeat the purge a number of times, she had gotten used to it.

“So you had to go through some real thought to part with these things?” Narrow asks.

Virginia doesn’t respond.

Narrow tries more questions about her OCD, but Virginia, at least the way Kuhl is playing her, keeps her cards close to her vest. She is not terribly insightful, or interesting, or engaging.

“So let’s talk about the depression now,” Narrow says.

It started in college, Virginia tells him, when she was “finding out that I’m gay” and worrying about what her parents would think, but it wasn’t terrible, and she was never suicidal, and she was on meds now, and, especially since two of her brothers had come out in the meantime, her depression was really not much of a problem.