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Altering the Course of Schizophrenia

By Courtney Reyers, NAMI Publications Manager

This month the Recovery After an Initial Schizophrenia Episode (RAISE) project, overseen by the National Institute of Mental Health (NIMH), moved forward with a crucial step in refining its research approaches. The RAISE project, which focuses on early and aggressive treatment of schizophrenia, began full-scale clinical trials on August 9. RAISE researchers believe that early intervention improves clinical outcomes for individuals facing schizophrenia, reducing symptoms and preventing the deterioration of functioning characteristic of the illness.

Despite the current availability of treatments for people living with schizophrenia, many do not receive treatment until the disease is well established, with recurrent episodes of psychosis, resulting in costly multiple hospitalizations and disabilities that can last for decades. In addition, existing treatments have limited effectiveness and the potential to cause side effects. Periods of unemployment, homelessness and incarceration are common, making schizophrenia a costly disease for individuals, their families and the community at large.

RAISE seeks to fundamentally change the way schizophrenia is treated by stepping in during the early stages of the illness—when symptoms may be most responsive to treatment. The hope is that such a coordinated approach, tailored to each individual and sustained over time, may make lasting differences in the adherence to treatment and its overall success.

“RAISE is a crucial project because prevention and early intervention are two areas that the field needs to develop,” said NAMI’s Medical Director, Ken Duckworth, M.D. “For too long, the field of psychiatry has been a downstream service. The delivery model hasn’t focused on serving people upstream.”

Two independent research groups are working in parallel to develop and test potential intervention approaches. The treatments are similar but the research approaches and settings are different, allowing RAISE researchers to rigorously test interventions under a variety of conditions.

One group, led by John M. Kane, M.D., of the Feinstein Institute for Medical Research, is called the RAISE Early Treatment Program (ETP). It has 34 locations across the nation and will follow 400 individuals throughout the trial and for two years after the culmination of the trial to monitor and evaluate treatment. The ETP will compare two different ways of providing care to people in early stages of schizophrenia. Treatment may include personalized medication treatment, individual resiliency training and supportive services such as family psychoeducation and education or employment assistance.

The second team, the RAISE Connection Program, headed by Susan Essock, Ph.D., of Columbia University, aims to recruit 100 participants in New York and Baltimore to engage in individually tailored treatment, illness management strategies, education and/or employment assistance, supportive services and follow-up care for up to two years.

Typically, a team-based, multi-element approach is not implemented until people diagnosed with schizophrenia are in chronic stages of the illness. First-episode patients usually get medication and help getting back on their feet but after that they are pretty much on their own. The RAISE project is looking to change this method of care.

“[RAISE] is saying no to treatment as usual. We need to throw the kitchen sink at this illness right from the start and we need to retain this person in treatment for a sustained period of time,” Dr. Jeffrey A. Lieberman, M.D., of the Research Foundation for Mental Hygiene, Lawrence C. Kolb Professor and Chairman of Psychiatry at Columbia University and recipient of the 2011 NAMI Scientific Research Award said.

“[RAISE] will enable researchers to demonstrate how a strategically timed intervention at the onset of symptoms can prevent the debilitating effects of one of humankind’s most devastating and costly mental disorders,” said Dr. Lieberman, “This is a unique and historic opportunity to bring, more rapidly than we could have imagined, research and clinical efforts to bear on the question of how to reduce the burden of this devastating disease to the patient, the family and society.”

Most patients are treated at community centers and not at specialized treatment facilities. Because the number of individuals who develop schizophrenia each year is relatively few, community programs cannot devote staff solely to the treatment of patients experiencing a first episode of psychosis. Dr. Kane’s team has developed programs that will allow community clinicians—ones who treat a wide variety of patients—to develop expertise in treating people who experience a first episode of psychosis. If successful, the ETP will provide community centers a model for providing better treatment for first-episode patients with available staffing and resources.

“Not only do we hope to change the trajectory and prognosis of early-phase schizophrenia, but also the way that people think about this illness,” Dr. Kane said. “Only a few decades ago, the word ‘cancer’ was uttered in whispers, if spoken at all, and inspired enormous fear and misunderstanding. In a similar fashion, we hope to alter the connotation of the word schizophrenia by demonstrating that this brain disease can be effectively managed so that individuals who experience its onset can have a high likelihood of recovering and of doing the many things that we all take for granted: going to school, working, having hobbies, friends and intimate relationships.”

ETP is based on a shared, decision-making model in which patients and their families choose among evidence-based interventions for symptom improvement, developing resiliency and well-being as well as for maximizing social and vocational functioning. These interventions are designed so that they can be implemented at settings across the country as well as across diverse backgrounds. For example, the Feinstein program includes a computer program to provide information from specialized research centers about the treatment of patients with first-episode psychosis to be readily available at community centers. Dr. Kane’s team will compare its treatment program with what is currently provided by community facilities.

“It is critical that we develop and test a treatment package that can be delivered under ‘real world’ conditions,” Dr. Kane said. “Since there are important differences across the United States in terms of local resources, reimbursement patterns, demographic characteristics, etc., we want to make sure that we are working with patients and clinicians in representative communities. We also hope to work with the local NAMI Affiliate in each community to engage them in helping us with patient ascertainment and recruitment.”

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