NEW ORLEANS – If the DSM-5 will one day be a butterfly, the document today can best be thought of as a poky caterpillar, voraciously consuming its way toward a faraway date when it could take flight.
Ten years into the revision process, the unprecedented public posting on the Internet of proposed changes to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-R) in February unleashed a torrent of responses. The work groups have yet to sort through and synthesize thousands of comments from clinicians, professional organizations, and the public.
“This is not a final document. The DSM is a work in progress right now,” said Dr. David Kupfer at the annual meeting of the American Psychiatric Association, the site of vigorous debate about proposed changes at 12 formal symposia and additional workshops and feedback sessions.
“We want to try to be as transparent and inclusive as possible,” said Dr. Kupfer, chairman of the APA's DSM-5 Task Force and professor and chair of psychiatry at the University of Pittsburgh.
The resulting dialogue has been as spirited as it has been exhaustive, and in general has been applauded as a welcome attempt to merge scientific evidence with the day-to-day realities of clinical practice.
“It's extraordinary,” said Dr. Nora Volkow, who is the director of the National Institute on Drug Abuse and serves on the DSM-5 substance abuse task force.
“You're taking advantage of the experience of the clinical world out there, as opposed to saying, this is what my laboratory experiments tell me,” she said in an interview at the meeting. “Of course, it slows the process, but in a way that's OK. You want it to be as close to reality and predictive… of symptoms patient present with, as possible.”
The immediate response to the online posting of proposed DSM changes took nearly everyone by surprise. The document received 41 million hits and generated thousands of formal and informal comments.
“At the end of the day, we've probably received 10,000 comments about what people around the world would like to see and not see in the DSM,” Dr. Kupfer said.“It's actually, I would say, quite invigorating.”
Thirteen DSM-5 Task Force work groups are meeting regularly to review public comments and tweak their draft recommendations in preparation for phase I field trials to test the feasibility, clinical utility, and reliability of proposed diagnostic criteria. (To follow the process online, go to the APA's Web site at www.dsm5.org/ProposedRevisions/Pages/Default.aspx
Pilot trials are slated to begin this summer, with larger field trials planned to be underway by fall, said Dr. Kupfer during a press briefing held at the meeting.
The Task Force budget of less than $2.5 million will likely confine trial settings to just 8-10 clinical sites, to be drawn from among 47 institutions that have completed applications and 70 that have sent letters of intent to participate.
The first field trials will be conducted on “priority disorders,” largely the group of diagnoses that generated the most numerous and heated public comments, Dr. Kupfer explained.
“Not to our surprise, the largest number of comments were received by the working group looking at autism and the autism spectrum disorders,” he said.
At issue is whether to define autism spectrum disorders along a continuous spectrum, “which would allow us to adjudicate levels of severity, difficulties, disabilities, and impairment, instead of simply categorizing somebody as one [diagnosis] or another,” he said.
A similar philosophy underlies proposed changes to diagnoses of eating disorders, a draft category that also generated considerable input from individual clinicians, professional organizations, families, and patients.
Other diagnostic categories that received abundant public comment included anxiety disorders, especially proposed changes to posttraumatic stress disorder and generalized anxiety disorder; and substance use disorders, Dr. Kupfer said.
He said much commentary also focused on the controversial issue of bipolar disorder in children. C new diagnosis, temper dysregulation disorder of childhood, is being considered. “Half the people liked the disorder but didn't like the name; half the people liked the name but not the disorder.”
General comments were also received in response to proposals about assessments and outcome measures for all patients seeking mental health care.
“One of the things some of us feel very, very strongly about is that assessment needs to be enhanced, covering a number of areas that should always be addressed, regardless of the diagnosis,” he said.
Such categories, to be self-rated by a patient at each clinical visit, might include depression, anxiety, anger, and substance use, according to the DSM-5 draft document.