Stopping psychosis before it starts: a national program builds on efforts in Portland, Maine, to prevent psychosis in at-risk youth.

On April 10, 2007, the Robert Wood Johnson Foundation (RWJF) launched a $14.4 million national program to build upon and replicate the early success of the Portland (Maine) Identification and Early Referral (PIER) program to prevent psychiatric illnesses among young people. Jane Isaacs Lowe, senior program officer at RWJF, explained that the new program, the Early Detection and Intervention for the Prevention of Psychosis Program (EDIPPP), represents the Foundation's single largest investment in mental health to date, reflecting excitement about the promise that PIER's approach offers for forestalling or preventing debilitating and costly major mental illnesses. The Foundation's interest in this work is driven in part by the enormous human and financial costs inflicted by major mental illnesses such as schizophrenia.

The national program is expanding PIER's success during the past seven years in identifying and treating young people experiencing subtle and early symptoms that herald the onset of serious mental illness and, in most cases, preventing an initial psychotic episode and hospitalization. In addition, EDIPPP is awarding four-year grants to replicate the PIER model, which uses a combination of evidence-based pharmacologic and psychosocial interventions in the prevention and treatment of severe mental illnesses (in this case, schizophrenia and major depression with psychosis) in people ages 12 to 25. The four sites are Sacramento, California; Salem, Oregon; Ypsilanti, Michigan; and Glen Oaks, New York. The existing PIER program at the Maine Medical Center serves as RWJF's National Program Office for EDIPPP.

Each of the program sites represents different and more ethnically diverse populations than Portland's, but each will present similar challenges to mounting the type of community-wide education and outreach essential to identifying young people at-risk and ensuring early referral and treatment. In areas where early intervention programs originated (the United Kingdom, Australia, Scandinavia, Canada, and elsewhere in the United States), success has hinged on how effectively these programs have become known and accepted in their communities.

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In Portland, young people typically are referred by high school guidance counselors, pediatricians, or other clinicians who attended presentations about PIER's work, visited the PIER Web site (www.preventmentalillness.org), and are familiar with the early warning symptoms that suggest the onset of a psychotic illness.

For example, a ninth grader in a local high school began the year impressing his English teacher with his articulate class comments and well-organized writing assignments. He always appeared neatly dressed and groomed. Then "Ben" suddenly began to show up for days at a time wearing the same unkempt clothes. His writing became more rambling and tangential, and his comments in class often were disturbingly unrelated to the subject at hand.

An excellent athlete, Ben dropped off the freshman soccer team without explanation, avoided his friends, and isolated himself in his room at home. Never a regular or committed participant at his family's church, he began to read the Koran for hours on end and to berate his baffled and anxious parents for what he felt were their attempts to read his mind and brainwash him to suppress his newfound religious zeal.

His mother had heard about PIER and called the program. She told the intake worker that her son's frightening and rapid changes were accelerating. An appointment was offered the next day to explain the nature of PIER's research, explore the family's attitudes and experiences with the mental health system, and ascertain their willingness to participate. Ben's unusual thinking and other bizarre beliefs and behavior were assessed using the Structured Interview for Prodromal Syndromes (SIPS), an instrument developed at Yale University and now commonly used by early intervention programs.

The SIPS confirmed the clinical urgency of his deteriorating cognition and behavior. Like many young people referred to PIER, he quickly was started on one of the newer antipsychotic medications after the team psychiatrist ruled out medical causes for his symptoms. Ben and his family also received hours of education about the presumed changes in his brain underlying his symptoms, the importance of recognizing and minimizing stresses (including use of marijuana and other street drugs) that exacerbate such symptoms, and repeated reassurance that bad parenting is not responsible for these frightening changes.

In addition to close medication management and regular documentation of the course of Ben's symptoms, he and his parents were encouraged to join a psychoeducational multifamily group, meeting twice monthly over two years. Research by PIER Program Director Dr. William R. McFarlane and others has shown that this kind of group markedly reduces risks for psychotic episodes. Group leaders and members provide ongoing support, comfort, and guidance at a time of crisis, fear, and social isolation for these families. There is abundant sharing of expertise and experience among the five or six families and clinician leaders who regularly attend, as well as modeling of thoughtful problem solving.

Although the research has not yet concluded and results have not yet been published, data available for PIER's first four years show a drop in first psychiatric hospitalizations for psychotic disorders in the Greater Portland catchment area relative to the rest of Maine. Statewide, some 30 to 40% of young people exhibiting early symptoms go on to have a full-blown diagnosable illness, but fewer than 15% of cases treated by PIER have deteriorated to a psychotic symptom level. Of these, most have responded to aggressive treatment with a decrease or even a disappearance of earlier symptoms, often with a return to school or to a higher level of functioning than before entering the program.

In large part, this success follows years of outreach efforts familiarizing clinicians, teachers, guidance counselors, and many others working with young people with the "warning symptoms" that should prompt a referral for screening and timely treatment (For a list, refer to PIER's Web site). Most recently, PIER clinicians have been teaching young people themselves in tenth grade health classes in local high schools, offering the optimistic message that the knowledge they acquire could equip them to dramatically help a friend or family member whose distress they may well be the first to hear about.

Widespread dissemination of this early intervention model throughout the United States offers tremendous hope and optimism for combating some of the most devastating and costly illnesses that can afflict young people and their families. Closing a window of vulnerability at a critical period could confer not only short-term symptom improvement, but also long-term protection from disability associated with psychotic illness (just as early detection and treatment have done for cancer and heart disease). This would be a public health triumph whose significance can scarcely be overestimated.

Dr. Maier's son experienced a psychotic onset to his bipolar disorder a decade ago, and Dr. Maier draws on his experiences in working with families in his research.

BY JAMES MAIER, MD, DFAPA

ABOUT THE AUTHOR

James Maier, MD, DFAPA, is a Research Psychiatrist with the PIER Program with more than 30 years in private practice and five years working with PIER.

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