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Backgrounder

Schizophrenia is a chronic, severe, and disabling brain disorder that affects about 1.1 percent of the U.S. population age 18 and older in a given year. Symptoms usually develop in men in their late teens or early twenties and in women in their twenties and thirties. In rare cases, schizophrenia can be diagnosed in childhood. The symptoms of schizophrenia fall into three broad categories:

  • Positive symptoms affect both thoughts and perception and they include hallucinations, delusions, and disordered thinking. Positive symptoms can be terrifying to the person who experiences them, and may cause fearfulness, withdrawal, or extreme agitation. To a person who is not ill, the speech of persons with schizophrenia may seem odd and difficult to understand.
  • Negative symptoms represent a loss or decrease in the ability to initiate plans, speak, express emotion, or find pleasure in everyday life. To a person who is not ill, these symptoms are harder to recognize as part of the disorder and are often mistaken for laziness or depression.
  • Cognitive symptoms (or cognitive deficits) are problems with attention, certain types of memory, and the executive functions that allow us to plan and organize. Cognitive deficits can also be difficult to recognize as part of the disorder but are the most disabling because of their impact on one's day-to-day life functioning.

Available treatments, such as antipsychotic medications and social skills training, can relieve many of the disorder's symptoms, but most people who have schizophrenia must cope with some residual symptoms as long as they live. People with schizophrenia frequently drop out of school, lose the ability to work competitively, and become increasingly isolated from friends and family. Although the course and features of schizophrenia vary from person to person, people with the disease are much more likely than others to be unemployed and homeless. Substance abuse often becomes a problem, further compromising functioning.

People with schizophrenia have significant rates of co-occurring health problems including other mental illnesses and medical conditions. The mortality rates from diseases such as diabetes and cardiovascular, respiratory, and infectious diseases are over twice, and in some cases, over three times as high as compared to those without mental illnesses. About 5 percent of people with schizophrenia commit suicide.

Schizophrenia is a costly disease, for individuals, families, and the nation. Patients with schizophrenia are among the most vulnerable in our society and are greatly dependent on family members and the limited services provided by Federal, State, and local systems of care and financing. Much of the long-term care provided to patients, both in terms of treatment and housing, is paid for with public funds; additional costs are incurred by the criminal justice system, and providers of services and shelters for the homeless. Finally, the disease is responsible for enormous losses in productivity and income, both for patients and caregivers.

Given current knowledge of the earliest phases of schizophrenia, the best chance for altering the discouraging prognosis commonly associated with the illness may be to intervene aggressively at the first episode of psychosis, before functional abilities are lost. The Recovery After an Initial Schizophrenia Episode (RAISE) initiative will examine this approach by supporting the development and testing of two complementary models for early intervention in schizophrenia. Both treatments are designed to be deployed in real-world settings and to be cost-effective. From the earliest stages of development, these interventions will incorporate features necessary for rapid dissemination into community settings, thus facilitating the transition from research to practice.

The interventions will include the range of therapies and support currently available for schizophrenia, including medications, psychosocial therapies, rehabilitation services, and supported employment, all aimed at promoting symptom reduction, and improving the ability to work, participate in social life, and live independently. While these individual approaches are available to some extent now, the goal of RAISE is to provide an integrated system of intervention, incorporating varied approaches in a systematic way tailored to individuals, and achievable in the real-world environments in which people with schizophrenia obtain assistance.

RAISE will proceed in three phases:

  • A period for refining the proposed interventions based on input from stakeholders, such as mental health consumers and family members; representatives of State and local service agencies who treat young people with psychotic disorders; scientific experts in the area of early phase schizophrenia; and representatives of Federal agencies whose missions intersect with the care of persons with schizophrenia. These Federal agencies include the Substance Abuse and Mental Health Services Administration, the Centers for Medicare and Medicaid Services, the Social Security Administration, the Department of Justice, the Department of Veterans Affairs, and Walter Reed Army Medical Center.
  • A feasibility study to demonstrate that each intervention can be fielded in real world community treatment settings and be evaluated in a randomized clinical trial design.
  • Large-scale, geographically diverse practical trials built around the typical patients, clinicians, and payment mechanisms encountered in routine clinical practice.

Stimulus funds will support the conceptual and feasibility stages described above. These funds will be spent to employ large numbers of academic and scientific experts, treatment delivery specialists in real-world clinics, research assistants, data management and processing personnel, and business office staff across provider systems in several states. The NIMH has committed Institute funds to complete the large-scale practical trials that will evaluate the effectiveness of the two interventions.

To date, the prevailing assumption has been that someone diagnosed with schizophrenia faces an inexorable decline in mental health and overall functioning. RAISE has enormous potential for changing this expectation and making functional recovery a realistic goal. Even a fractional reduction in the disability and need for services that result from this disease would lead to considerable cost savings for communities as well as greatly improved quality of life for affected individuals and their families.