Psychosis Risk Syndrome: Just As Risky With A New Name
A bad diagnosis by any other name is just as risky.
Posted July 30, 2010
The DSM 5 Workgroup that first suggested the inclusion of "Psychosis Risk Syndrome" has halfway come to its senses. It has dropped this stigmatizing name in a last ditch repackaging effort to salvage the proposal. The criteria set remains essentially the same, but is relabeled with the equally awkward title: "Attenuated Psychotic Symptoms Syndrome". The suggestion remains just as dangerous and stigmatizing, whatever it is called.
Why the halfway reversal by the Workgroup at this late date? The "Psychosis Risk" proposal has stimulated widespread opposition (even I am told from within the Workgroup itself). The arguments against it are simply overwhelming. The false positive rate in predicting psychosis would be between 70-90%, meaning that between two and nine youngsters would be misidentified for every one accurately identified. The treatment most likely to be used would be antipsychotic medications. These have no proven efficacy in preventing psychosis, but most definitely have terrible side effects- especially enormous weight gain and its life threatening complications. These medications are overprescribed to those least able to resist- the young and those who are most financially disadvantaged.
Finally, the name "Psychosis Risk" was filled with ominous threat and stigma. Having a label that suggests one is at risk to soon develop a psychosis would cause the mislabelled person much unnecessary worry, unnecessarily reduced ambitions, and create great risk of discrimination in getting work or insurance - thus further exacerbating the risk side of the already totally unbalanced risk-benefit ratio.
As an early intervention strategy, everything that could possibly be wrong was wrong with "Psychosis Risk Syndrome". An extremely inaccurate diagnosis would lead to widespread treatment with an ineffective but dangerous medication. To top it off, the writing of the criteria set is remarkably vague and internally inconsistent. That "Psychosis Risk" was an obvious nonstarter finally got through to the DSM 5 Work Group.
Seemingly, this should have been an end of story moment and we could all breathe a sigh of relief. The obvious and correct next step would be to withdraw the proposal for official recognition and instead relegate Psychosis Risk to where it belongs- in the DSM 5 appendix of suggestions that require further research. Instead, the Work Group is trying to save the suggestion by changing its name and ditching some of its overly ambitious claims.
The idea is to avoid the criticism regarding the high false positive rate by withdrawing claims that the "patients" described are likely to go on to psychosis and that the risk syndrome diagnosis can help to prevent this outcome. But the diagnosis now rests on a new set of equally questionable assumptions, that-1) the people described would have come for treatment anyway; 2) there will be no increase in overall diagnosis, just more accurate diagnosis;
3) inappropriate antipsychotic use can be contained by physician education; and, 4) the new name will carry less stigma.
The Work Group has always been well intentioned, but is as dead wrong in its new claims as it was in its old. Were this diagnosis to be made official- however renamed - it would certainly be used (and probably widely misused) to diagnose youngsters who previously would have avoided diagnosis and treatment. Particularly given the imprecise writing of the criteria set, it will mislabel many teenagers- especially those who are using substances, but also those who are creative or eccentric, and/or have difficult relationships with their parents. The experts on the Workgroup might make these mistakes infrequently, but they can't responsibly make suggestions that are usable only by experts like themselves. Once official, the diagnosis will be misused in ways they never imagined or would accept and will lead to even greater misuse of antipsychotics. And the Work Group can't rely on the wonders of physician education to clean up the mess they will be making. Most of the physician education will come from the very drug companies that have already shown themselves remarkably adept at furthering the overprescription of antipsychotics to children and teenagers.
The name change will also not solve the stigma problem. The new name is ominous enough and the implied (but often incorrectly assessed) risks and disabilities it labels will affect the behavior of insurance companies, employers, and the new "patients" and their families.
Until one year ago, I was comfortable sticking to my early decision to avoid any comment whatever on DSM 5. I reversed myself and felt a compelling responsibility to speak up only when it became clear that "Psychosis Risk Syndrome" had a realistic shot of becoming an official DSM 5 diagnosis. The Work Group had clearly failed to do a careful risk/benefit analysis and to give sufficient weight to the many dangerous unintended consequences of its suggestion. The attempted fix of a name change and a reduction of claims does not at all reduce these dangers. The Work Group should finally do the right thing and nominate this pet proposal (whatever it winds up being called) to go where it clearly belongs- in the appendix of DSM 5.