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Schizophrenia Awareness Week and the Continuing Struggle to Make Early Treatment of Psychosis Available to Those Who Need It

This month, May, 2012, includes Schizophrenia Awareness Week, in Australia (May 20th)  and the U.S (May 26).  These are  important occasions to spread the word that schizophrenia is a treatable disorder and that recovery from its symptoms is possible. Also that untreated or under-treated schizophrenia is an extreme challenge for many people to whom you are probably less than 6 degrees removed.

But for many advocates, this has not been a particularly positive year for our efforts, particularly concerning the campaign to expand early treatment options for the psychosis that usually precedes schizophrenia — a struggle that has centered on proposed changes to the so-called Bible of psychiatry, the DSM5.

As many of you know, I have a personal stake in this, having seen my son “Alex” receive the positive benefits of an early intervention for his incipient schizophrenia.  The debate over whether to expand this treatment option to other youth who may be experiencing similar symptoms contains good people making reasonable arguments on both sides. It also includes some straw men and a few maddeningly self-serving main characters.

As I continue, please note that the following views are entirely my own and do not necessarily reflect the positions of advocacy organizations or mental health professionals with which I am affiliated.

Fevered debate continues over the final terms of the DSM5, with remaining arguments focused on the expansion of diagnostic criteria for some disorders including addiction, and the narrowing of others, such as autism. Why the continuing vitriol, you may wonder? For starters, if a particular disorder receives the status of an official diagnosis in this professional manual,  its recognition increases the likelihood that people who have the cited symptoms will seek and receive treatment, and insurance companies will pay for such services. If more mental disorders are arrested at earlier stages, less psychiatric care will be needed over the long term. Beyond these practical realities, there is a lot of ass-covering going on among the leading lights of psychiatry. I’ll get back to that in a minute.

Meanwhile, for parents, practitioners, and researchers who supported the proposed new diagnosis for “attenuated psychosis syndrome,”  the main fronts of this effort to obtain better mental health care for those suffering from the early symptoms of schizophrenia have simply moved back to the studies and individual families and their doctors where they had played out before — with one exception.

There are now some 20 clinics and leading psychiatric hospitals in the U.S. (with many more in Europe, Canada, Australia and the U.K.) that have already established specialized treatment programs for treating early psychosis — and they will continue to do so in spite of the DSM5 decision. Indeed, these are the programs that will likely produce the definitive data that will ultimately bring about the change in diagnostic criteria that will enable wider treatment for early psychosis, thus sparing millions more youth from the full blown disorder of schizophrenia.

One such pioneering program is the PREP program in San Francisco, affiliated with the University of California, San Francisco (U.C.S.F).  I will be participating as a keynote speaker on June 8, 2012 in the 1st Annual PREP (Prevention and Recovery in Early Psychosis) Conference to be held at The Event Center, Saint Mary’s Cathedral 1111 Gough Street San Francisco, CA 94109. The day-long free educational event is designed for mental health practitioners (CEU’s are offered), youth, parents and anyone else interested in learning the theory, symptoms/warning signs, methods of treatment of early psychosis in the 16 to 30 age group. (Click on the conference title above for more information and registration details.)

Many who have followed the story of this much debated diagnosis may find themselves baffled by the continuing over-heated rhetoric. One of the most confusing issues  at the heart of this dispute concerns the “false positive” argument: that is, the possibility that young people whose symptoms don’t progress to a full blown state of schizophrenia would be stigmatized by the diagnosis and then receive unnecessary treatment.

To these arguments, I would say first that people should not be forced to make decisions about their mental health based on whether that care will stigmatize them in the eyes of others. Secondly, I take issue with this notion of “unnecessary” treatment.

The False-Positive Straw Man

The possibility of a young person receiving a false-positive diagnosis for schizophrenia has worried plenty of people inside and out of the psychiatric profession. And there is good reason to take a close look at this issue. Based on the available studies, only one-third of young people with early symptoms of psychosis actually progress to a full-blown, more serious disorder—without treatment. At the center of this debate is the cost-benefit analysis of the early intervention option, usually intervening with cognitive behavioral therapy and/or antipsychotic medication.

The noted Australian early psychosis researcher Patrick McGorry pinned the vehemence of the current controversy on residue from other recent disputes within the American psychiatric profession. In 2006, he complained to Time magazine that while research and funding to support early psychosis treatment is blossoming in other countries, “it has ground to a halt” in the United States. “They’ve clouded the issue with the whole business of overmedication of younger children for ADHD,” he said.

To confirm McGorry’s assessment of what’s behind American psychiatry’s hysteria around expanding the diagnosis for psychosis one need only listen to the dire predictions of Allen Frances, the editor of the last DSM edition, who has led the charge to exclude the “attenuated psychosis” diagnosis from the DSM-5.  Frances has written that early intervention would cause “a wholesale medical imperialization of normality,” and create a “bonanza for the pharmaceutical industry,” for which “patients would pay a high price [of] adverse effects, dollars, and stigma.” Frances said he regrets the role played by the DSM-IV in creating “the bipolar fad” of the last decade by opening up that diagnosis to children and adolescents. More recently Frances has characterized the concept of prevention in psychiatry as little more than a pipe dream, certainly grossly premature in the case of attenuated psychosis.

Defending his work with early psychosis and the concept of prevention, McGorry explained, “It’s unacceptable to wait for patients to slide into madness, though it’s impossible to predict with any certainty which ones will. You’ve got to do something.” By this, he seemed to mean adding an antipsychotic medication to the treatment mix.

I appreciated McGorry’s clear understanding of just how miserable his patients typically are while they struggle with the onset of psychotic symptoms. In the Time article, I found his description picture-perfect: “They’ve got no friends. They’re sitting alone in their bedroom, their lives passing them by. You’ve got to actively research what’s going to help them. The critics have been right to raise issues, but you can’t neglect people when they clearly have a disorder, just because you can’t technically fit them into our arbitrary system of classification.”

Since his original clinical trial, McGorry and his Australian colleagues have gone on to treat many more young people who are at ultra-high risk for psychosis. Some guardedly good news has emerged from these recent trials. The six-month transition rate to psychosis, which was a 34 percent rate in McGorry’s earlier trials, had, by 2010, dropped to 9.2 percent. What does it mean? McGorry speculates that this drop in conversions correlates with many of his patients being identified earlier in their disease processes. As a result, he thinks they respond better and quicker to the interventions they’re getting. McGorry does not think, as some of his critics assert, that most of these young people were “false-positives” when they first entered treatment.

I would like to put a human face on this concept of the “false-positive.” Let’s say  a young person comes for treatment with pre-psychotic symptoms including paranoia, weak hallucinations, depression, social withdrawal and the beginnings of disordered thinking–all would fit under an “attenuated psychosis syndrome” diagnosis. Depending on how long his symptoms had been going on and how frequently they occur, under the proposed treatment model, he would be deemed at “high risk” of developing full blown schizophrenia. As a first stage treatment, he would then receive up to six months of cognitive behavioral therapy and possibly participate in family therapy to help him and his loved ones manage and hopefully arrest these symptoms. He would not receive antipsychotic medication unless and until his symptoms worsened or continued unabated after several months of CBT. Without knowing whether this young man’s symptoms would have progressed to full blow SZ the question is then: was the treatment he received a net loss or gain to him and his family?

The Definition of “Staged Treatment”

These days, McGorry is very careful to describe his treatment approach as strictly “needs-based.” He outlines a clinical staging model, in which an individual’s treatment moves from one stage to the next only after his symptoms escalate. After determining that the individual meets the criteria of ultra-high risk—someone between the ages of sixteen and thirty who is experiencing attenuated symptoms of psychosis, or is within a year of a first psychotic episode—the first stage of care he receives at McGorry’s clinic is cognitive behavioral therapy and the daily intake of omega-3 fish oil, a readily available nutritional supplement that has been shown to be effective in treating early psychosis, likely by enhancing the ability of the brain’s synapses to communicate. Antidepressants will also be considered if the young person’s depression is present and severe, and she doesn’t respond to CBT. And then, if indicated, McGorry recommends a very low dose of antipsychotic medication, ideally for a limited period of time of six weeks.

If this approach to medical care sounds familiar, that’s because it is the way most medical conditions are treated. Think about the treatment of high blood pressure as a precaution against strokes and heart attacks. Consider the removal of pre-cancerous tissues as a defensive move against tumors.

This same staged model for treating early psychosis has now been replicated and studied in a growing number of national health systems and university-affiliated clinics in the United States, United Kingdom, Europe, Scandinavia, and around the world. From the outside, it looks to be a constant balancing act between risk and benefit; the codifying of each symptom and step of treatment into a fixed clinical protocol an ongoing process—with a high level of cooperation by clinicians working and communicating with each from early intervention clinics around the world.

Who Seeks Early Psychosis Treatment and Why?

“Anywhere but here” is the refrain heard from the majority of teenagers who, if given a choice, would give serious thought to cutting off a finger before agreeing to see a “shrink.” Demian Rose in his role as medical director for PREP San Francisco offers an insight into how and why young people initially arrive at his clinic for care, explaining that most don’t come because they’re failing at school, or even because they’re hearing voices. These fleeting psychotic symptoms no doubt fuel their anxiety and depression, but most come for an evaluation, Rose says, “when they become socially isolated and emotionally distant from their peers.” Research confirms that mood fluctuations and stress trigger and exacerbate the recurrence of psychotic symptoms in those at risk.27

The good news may be that since friendships and budding romantic feelings are such a priority to adolescents, when this area of their lives gets messed up, they have a greater motivation to get evaluated and treated. In the process, they may stave off the psychosis that could be laying in wait.

The Important Role of Psychotherapy in Pre-Psychosis Treatment

The therapeutic goal at PREP is to help the psychologically distressed individual (around ten to one are male) retrain and reframe his thoughts and behaviors toward more socially acceptable habits.28 This is also the essence of the cognitive behavioral therapy (CBT) used with young people who are treated at PREP. This form of psychotherapy has been around for decades, but it has only recently been adapted by psychologists in the United Kingdom for the treatment of psychosis. (CBT in its original form is a widely used form of talk therapy to treat most other common mental disorders, including depression). As adapted for psychosis, CBT teaches an individual who becomes suspicious or paranoid to become consciously aware of a negative thought pattern that is about to escalate and then to learn how to “catch it, check it, change it.”

Imagine that a young man who is experiencing fleeting psychotic symptoms is sitting on a packed bus at rush hour. In his discomfort at the crowd pushing up against his knees, he might acquire the distinct feeling that the middle-aged woman standing a few feet away is staring at him, angry that he has a seat and she doesn’t. He may also fear that she’s scrunching up her nose because she believes he smells badly. He could go off even further on this paranoid tangent, becoming suspicious she will report him to the bus driver, who will request he get off at the next stop.

Before saying something inappropriate to the woman or getting up to leave the bus preemptively to avoid the feared outcome, CBT teaches this young man to stop and catch his wayward thought process. Checking to see if there’s any other viable explanation for the woman’s behaviors then reveals to him the more likely possibility that the woman simply has nowhere else to look but in his direction. Further, he realizes that there’s no concrete evidence to support the belief that she blames him for her situation or judges his appearance negatively—nor that she has any intention to speak to the bus driver about him. This reframing allows the young man to change his thoughts and to then relax his mind and body for the duration of the bus ride. It’s the CBT mantra in action: “Catch it, check it, change it.”

Demian Rose, Rachel Loewy, and their colleagues writing in Current Psychiatry use a continuum model to demonstrate how the human spectrum of thought and perception ranges from ordinary to heightened and then on to varying degrees of psychosis. They demonstrate how a clinician can respond to a young person’s unusual comments or behaviors without “pathologizing” his behavior and risk alienating him. This approach offers the client perspective and a choice. On one hand, he can continue expressing his unusual thoughts openly and risk alienating others. Or he can choose to keep these thoughts to himself and gain social acceptance. Rose points out that in the prepsychotic stage, this interactive discussion and decision-making process is much more viable.

This same advice can be useful to parents of an adolescent or a younger child whose altered behavior or speech might suggest that he is close to this outer edge of the continuum. Putting science aside, I remember as a parent watching Alex in this state, and it was terrifying. As he left “reality” behind, I felt him slipping away from me, too. But the alternative to pathologizing this behavior, Demian Rose points out, is normalizing it, which allows you to open up an honest conversation with your child (or another adult) about thoughts and feelings that may not fit our definition of normal but may in fact be very human. I didn’t have this insight to guide me at the time, but it made perfect sense when I heard Rose explain that this sort of conversation is the best way to find out what someone in this state is feeling and thinking, and what he really needs from you.

In addition to training their clients to use this thought-reframing drill, the PREP program also includes family members and caregivers in ongoing treatment. The model calls for bringing the clients’ parents and other family members together in a regularly meeting “multi-family group.” There they receive psychoeducational treatment, meaning they learn about psychosis and how they can help the affected person stay on track. Getting together with other families provides much-needed emotional support to parents faced with the often daunting task of providing care a troubled adolescent.

The Role of the Family

The man credited with developing this model is William McFarlane, a pioneer in early intervention for psychosis whose PIER Clinic (Portland Identification and Early Referral) was established in Maine in 2000. McFarlane’s studies show that ongoing support groups made up of several families meeting together significantly reduces relapse rates for the schizophrenic family member—when compared to not involving families in care or offering psychoeducational support to one family at a time.29 The PIER program was also the first to demonstrate that teachers, social workers, pediatricians, and therapists in a community could be trained to successfully identify psychotic symptoms in distressed young people and then intervene by referring them to PIER for an evaluation.

The Medication Issue

When an adolescent is diagnosed properly as “ultra-high risk,” he may be as little as a month or as long as one to two years away from developing full-blown schizophrenia—if he is going to convert at all. Demian Rose put the clinician’s dilemma succinctly: “The problem with the current diagnostic standard is that it ‘waits’ until it’s absolutely sure that dysfunction has been present for 6 months before confirming schizophrenia; so the message to parents and patients is all too often: ‘Let’s wait this out. You’re either going off a cliff. Or you’ll be okay. We’re not sure which.’ The real question should be how can clinicians reduce the risk of conversion while minimizing the risk and burden of any treatments.”

One guiding principle at PREP is to use as small a dose of antipsychotic medication as possible to keep the individual stable, and to err on the side of less is more.31 Convincing clinical data is accumulating on the positive outcomes coming from clinics using the approach practiced at PREP. Those who get treatment within the first six months to a year of the appearance of symptoms of psychosis show a much higher rate of remission and long-term recovery. If their symptoms convert to a diagnosis of full-blown schizophrenia (the usual diagnosis if they do) or bipolar disorder, their treatment is usually more effective, meaning their impairments are less, and their recovery is greater over the long term. But if they receive the same treatment from one to three years after psychosis has firmly taken hold, the rate of remission is lower, and the risk of side effects from long-term use of the medication goes up.32

Now in its second year of operation, the PREP program has treated thirty young people, ages sixteen to thirty, with a mean age of twenty-two years. Twenty-one of these patients had already progressed to full-blown schizophrenia before coming to PREP, but they were recent-onset patients. Nine hadn’t yet reached that threshold, and so were considered ultra-high risk.33 In the future, if the PREP-PIER model is permitted to become the standard for mental health care, we could reasonably expect this ratio to reverse; more young people could receive help before going “over the cliff” into a full psychotic episode, not after. Then their care could begin with CBT and be far less likely to progress to medication, at least not for a long period. The important thing is that they would learn the necessary self-regulating skills to stay safe.

In a professional journal, Thomas McGlashan, who led a clinical trial in early psychosis treatment at Yale and came out with what he saw then as disappointing results, nonetheless laid out the evidence for argument to treat young people for their symptoms of early psychosis as follows: (1) the patients are currently ill, (2) the patients are at high risk for getting worse, (3) no DSM-IV diagnosis accurately captures their current illness or future risk, (4) the diagnosis has been made with reliability and validity in the research setting, and (5) placement in DSM-5 would help promote the needed treatment and prevention research to enable articulation of a standard of care to benefit these patients and their families. He closed by pointing out that any potential harms can be minimized by patient, family, and provider education.

To my ears, this debate comes down to the question of who has the right to decide when an individual and a family have suffered enough. By continuing this now very public, fever-pitch argument over the difficult choice of whether to give a child or teenager a psychiatric medication, I think we’ve lost sight of what’s really at stake here. As Doctors McGlashan, McGorry, and Rose make clear, these young people are already very ill when they come seeking help. My sense of urgency comes from having watched my son Alex’s two painful years of decline until he became a shadow of his former self. And having the joy of watching him climb out of that state after three years on medication and in intensive CBT therapy. No young person should have to stay in that state any longer than necessary.

The lack of a recognized diagnosis for early psychosis in the DSM-5 will not stop parents and their affected adolescents from seeking and getting help for those symptoms. It will just keep the process of getting help expensive and difficult and limited the number who can be helped in time to stave off the possibility of developing a full blown disorder.

In other words, it will stay par for the course for American medicine. But that doesn’t mean parents and advocates shouldn’t continue the campaign to educate and lobby for change.

For comprehensive NEWS on early treatment of schizophrenia and a list of hospitals and clinics treating early psychosis in the US and around the world visit the website http://www.schizophrenia.com

For more information on the PREP Clinic.

[Some of this article is drawn from my book, A Lethal Inheritance, A Mother Uncovers the Science Behind Three Generations of Mental Illness. It has been updated to reflect recent developments around the DSM5.]

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