following along

Posted on Saturday 19 November 2011

In an earlier post [starting over…], I was commenting on the proposal to include the Attenuated Psychosis Syndrome in the DSM-5. In that post, I reviewed the comments from two members of the DSM-5 Work Group and a letter in response. I missed something. The DSM-5 Work Group had responded to the letter:
Response to Rietdijk et al. Letter
by William T. Carpenter, M.D. and Jim van Os, Ph.D.
American Journal of Psychiatry 2011 168:1221.

To the Editor: Rietdijk and colleagues provide an interesting perspective. In relation to the DSM-5 work on attenuated psychosis syndrome, there is no doubt that this is an important clinical problem associated with hope for better outcomes with earlier intervention, but whether to add attenuated psychosis syndrome as a new class is far from settled. The field trials are designed to determine the reliability of diagnosis outside the expert centers, and attenuated psychosis syndrome is a disorder or clinical syndrome for which the only question of false positives is the reliability and validity of case ascertainment. Transition to a psychotic syndrome is one of many possible outcomes, and failure to make this transition is not a false positive for attenuated psychosis syndrome. Attenuated psychosis syndrome is not defined as a risk state for primary prevention but as a disorder in which secondary prevention of a psychosis is a therapeutic aim…

In any case, if the results of the DSM-5 field trials support reliable application in nonexpert settings, our work group will have an interesting debate as to the placement in text or appendix and what name is best for the syndrome.

It was a clarifying response. They attempted to move the category of out existing because the patients might become psychotic into the realm of something that stood on its own merit, to be determined by field trials. Dr. McGorry, who is involved in an effort to develop treatment to prevent psychosis, has made this point himself – that such people are in need whether they develop psychosis or not. That’s not the impression I had gotten from the web site earlier, so I went back and reread what it said:

Attenuated Psychosis Syndrome: Rationale

Young people at risk for later manifestation of a psychotic disorder can be identified.  It has been established in follow-back studies that early signs and symptoms of schizophrenia, for example, are present years before diagnosis is established [e.g., Haffner’s longitudinal study] and can be predicted even in infants [Walker’s home movies study].  However, it is the work of multiple groups of investigators in several countries over the past 15 years that has produced evidence for the effectiveness of detecting at risk individuals.  The validity of criteria for identifying individuals as at risk has been published [see Scott et al, below].  An approach to this issue in the DSM-V framework has been published…  And also widely debated…

Critical issues to consider include sensitivity, specificity, positive predictive power and negative predicitive power; the evidence for effective intervention, and issues related to stigma and potential harm of excessive treatment. The potential benefit of establishing a category involves the evidence that psychotic illness is most effectively treated early in the course raising the potential that early intervention may have long lasting benefit that is not achievable with later therapeutic intervention.  Also, as clarified in a recent IOM report, prevention science requires application.  It seems reasonable to anticipate that mental disorders will gradually develop interventions for primary and secondary prevention associated with a number of disorders.

For these reasons, a risk syndrome for psychosis is being considered for either the appendix or possibly the list of disorders.  Immediate issues relate to the unanswered question as to whether ordinary users of DSM-V in ordinary settings will be able to reliably and validly identify cases based on criteria developed and validated by expert investigators.  Any movement forward with this proposal will depend on affirmative answers to this issue in field trials.  A second problem relates to the absence of an evidence-based intervention which has demonstrated benefit in reducing conversion to psychosis.  Finally, more information regarding the potential negative effect on false positive identification is needed. In the final analysis, these factors will be weighed to assess the benefit/harm considerations of moving forward with this proposal.

Well, it says what I thought it said – the diagnosis was being considered because the person might develop psychosis ["at risk individuals"]. Here are the proposed criteria for the diagnosis:

Attenuated Psychosis Syndrome: Proposed Revision

The work group is recommending that this be included in DSM-5 but is still examining the evidence as to whether inclusion is merited in the main manual or in an Appendix for Further Research. As such, the work group strongly encourages feedback regarding this disorder.

All six of the following:
  [a] Characteristic symptoms: at least one of the following in attenuated form with intact reality testing, but of sufficient severity and/or frequency that it is not discounted or ignored;
  [i] delusions
[ii] hallucinations
[iii] disorganized speech
[b] Frequency/Currency: symptoms meeting criterion A must be present in the past month and occur at an average frequency of at least once per week in past month
[c] Progression: symptoms meeting criterion A must have begun in or significantly worsened in the past year;
[d] Distress/Disability/Treatment Seeking: symptoms meeting criterion A are sufficiently distressing and disabling to the patient and/or parent/guardian to lead them to seek help
[e] Symptoms meeting criterion A are not better explained by any DSM-5 diagnosis, including substance-related disorder
[f] Clinical criteria for any DSM-V psychotic disorder have never been met

I think they’re doing their best, but the criteria are pretty flaky. A delusion is a "fixed false belief." How can you have that with intact reality testing? Or hallucinate with intact reality testing? Putting those questions on the side, I’ll spot them that there really are such patients – people who are sort of Schizophrenic, but not really. I don’t want to bicker on that point, because it’s unresolvable.

They’ve obviously changed their tack to meet the objections, just like they’ve changed the name. They point here is that they still want to include this diagnosis in the manual, in spite of the objections, even in "the absence of an evidence-based intervention which has demonstrated benefit in reducing conversion to psychosis." Why do they want to include this diagnosis? Because "It seems reasonable to anticipate that mental disorders will gradually develop interventions for primary and secondary prevention associated with a number of disorders." They don’t want these patients to fall through the cracks. Well, I don’t want them to fall through the cracks either. But I don’t want them to include this diagnosis because I’m afraid the it will be an excuse to start them on neuroleptics – which haven’t been proven effective and carry significant dangers.

This is an unresolvable dilemma, this argument I’m having with Dr. Carpenter. We both have the patient’s best interests at heart, and yet our conclusions are diametrical opposites. There are a multitude of situations like this in the practice of medicine – situations where there’s something bothersome, but it doesn’t come together as a known syndrome or disease [yet]. I was taught what to do in such situations in medical school. It even had a name – Watchful Waiting. In another incarnation, it was called Benign Neglect.
  • Watchful Waiting: Expectant management, observation, surveillance-only management. Clinical decision-making: A stance in which a condition is closely monitored, but treatment withheld until Symptoms appear or change.
  • Benign Neglect: Decision-making: A stance of nonintervention that a clinician may adopt in the face of lesions and clinical conditions which have an uncertain or stable clinical course.

1965: I was home from medical school for Christmas, working in the Emergency Room of a local hospital. My then girlfriend [now wife] was coming to meet my parents. Not long after she arrived, she raced to the bathroom and threw up [the possible meanings weren’t lost on me], but she had a fever and right lower quadrant pain and tenderness. I took her to the Emergency Room where I worked. Her white blood cell count was elevated. That’s called "maybe appendicitis." She was admitted to the hospital and "watched." The next morning, she was fine, ate breakfast, and that was that. Well, actually, there was more. A few days later, we went to her home where I was to meet her parents. On arrival, I ran to the bathroom and threw up. Was it a "bug?" or "jitters?" or "a statement?" Who knows? The point is that we each still have an appendix.
2011: On a Thursday about a month ago, I awoke to read this email from a friend who was on the road:
    After eating supper on Tuesday night, I promptly threw up my supper. By Wednesday, I had lost my appetite and had a slight pain in my lower right side of my stomach. I’m now in … after being interviewed on… last night and will be heading home in 30 minutes. Most of the pain has gone in the stomach but the appetite is still gone.  I looked up the symptoms on the internet and there are a few for appendicitis but not many. I’m heading to … on Monday and hopefully will be back at full speed. But I don’t want to go there feeling bad. Any thoughts on my medical condition? I’ll be on cell phone during my travels.
That’s the typical history for an atypical appendix that has ruptured [atypical appendix means it’s wrapped behind the bowel and doesn’t cause the usual kind of pain]. I got him on the phone when he got in range and told him to go the Emergency Room post haste, that he’d probably ruptured his appendix. That was right, and was operated on that night. When we talked later, he mentioned a CAT scan before being admitted. I guess that’s routine these days to "prove" that there’s a reason to operate.
In 1965, my now wife was treated with Watchful Waiting. Appendicitis gets worse. The alternatives [ovarian cyst, a virus, not liking your future father-in-law] get better. In 2011, she would’ve had a CAT scan [apparently cheaper than being admitted, a Managed Care thing]. In 2011, my friend whose diagnosis was unquestioned, had a CAT scan before being admitted too – apparently more Managed Care.

In case you’re wondering why I stuck a couple of cases of Appendicitis in the middle of a discussion of the Attenuated Psychosis Syndrome, let me make it explicit. When you see someone with the kind of symptoms being described, you know there’s something awry, but you don’t know exactly what, and you don’t know what to do. That’s just part of practicing medicine. If you presented such a case to a supervisor, he or she wouldn’t know either. They’d say, "Just follow him along." That means Watchful Waiting. You don’t know at some given point in time, so you follow along until do know something or it turns out to require no action. I mentioned such a case earlier from long ago [1. from n equals one, 2. from n equals one, 3. from n equals one] who did become psychotic. There was another – the son of a friend – who fit the exact same mold. I followed him along too. Periodically, throughout his early and later adolescence, we played Dungeons and Dragons. I thought of it as play therapy. Well, we didn’t play exactly. We just made up characters, and over time, they be came much less fantastic, less in need of magical powers [so did he]. We stopped when he went to college. I’ve been to his wedding and the christening of his three kids. He’s still kind of an odd guy, and I guess I’m still following him along after thirty years.

The only reason to have a made up a diagnosis like Attenuated Psychosis Syndrome is to justify doing what one would do intuitively in a rational world. What doctors do in a situation like this is keep an eye on things, sometimes for a very long time. In the world of modern medicine, you’re supposed to know what to do up front, and there are lots of situations where you just don’t [and nobody else knows either]. Creating a diagnostic criteria to justify following someone along is silly. I guess the third party payers are afraid we’ll follow someone along in order to churn our fees [that would be one silly doctor]. Following someone along is no different than periodic visits for a person with borderline high blood pressure, inactive ulcerative colitis, or routine physicals.

I’ll bet Dr. Carpenter and I would do exactly the same thing if we didn’t have to worry about what to put on the insurance form, and we’d leave the DSM-5 out of the loop. If they want to put something in there, how about the needs following along syndrome? – a list of worrisome signs and symptoms justifying Watchful Waiting or Benign Neglect [maybe non-stigmatizing needs following along syndrome]…
    November 19, 2011 | 3:25 PM

    How far away are we from just adding prophylactic antipsychotics to our drinking water?

    In the area of the US known as the “diabetes belt” and “stroke belt,” nearly a quarter are on “behavioral” medications, according to Medco prescription statistics ( Coincidence? Causal? Too many people needing “shut-up” pills?

    At what point does overprescription of antipsychotics become a public health danger? Annual death rate from diabetes is more than twice that of suicide. But diabetes can be a profit center too!

    November 20, 2011 | 3:24 PM

    I really liked this post. Kind of along the lines of “Don’t just DO something, STAND there!” which is often exactly the correct course of action.

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