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RAISE Questions and Answers
Questions & Answers about Psychosis
- What is psychosis?
- What causes psychosis?
- How common is psychosis?
- What is the connection between psychosis and schizophrenia?
- What are the early warning signs of psychosis?
- What does “duration of untreated psychosis” mean?
- Do people recover from psychosis?
- What should I do if I think someone is having a psychotic episode?
- Where can I go to learn more about RAISE and psychosis?
Questions & Answers about Treatment
- Why is early treatment important?
- What is coordinated specialty care (CSC)?
- What is shared decision making and how does it work in early treatment?
- What is the role of medication in treatment?
- What is Supported Employment/Education (SEE) and why is it important?
- Where can I go to learn more about treatment options?
Questions & Answers about the NIMH RAISE Project
- What is RAISE?
- Why is RAISE important?
- What is the RAISE Early Treatment Program (RAISE-ETP)?
- What did we learn from the RAISE-ETP study?
- What is the RAISE Implementation and Evaluation Study (RAISE-IES)?
- What did we learn from RAISE-IES?
Questions & Answers About Psychosis
Q: What is psychosis?
A: The word psychosis is used to describe conditions that affect the mind, where there has been some loss of contact with reality. When someone becomes ill in this way it is called a psychotic episode. During a period of psychosis, a person’s thoughts and perceptions are disturbed and the individual may have difficulty understanding what is real and what is not. Symptoms of psychosis include delusions (false beliefs) and hallucinations (seeing or hearing things that others do not see or hear). Other symptoms include incoherent or nonsense speech, and behavior that is inappropriate for the situation. A person in a psychotic episode may also experience depression, anxiety, sleep problems, social withdrawal, lack of motivation and difficulty functioning overall.
Q: What causes psychosis?
A: There is not one specific cause of psychosis. Psychosis may be a symptom of a mental illness, such as schizophrenia or bipolar disorder, but there are other causes, as well. Sleep deprivation, some general medical conditions, certain prescription medications, and the abuse of alcohol or other drugs, such as marijuana, can cause psychotic symptoms. Because there are many different causes of psychosis, it is important to see a qualified health care professional (e.g., psychologist, psychiatrist, or trained social worker) in order to receive a thorough assessment and accurate diagnosis. A mental illness, such as schizophrenia, is typically diagnosed by excluding all of these other causes of psychosis.
Q: How common is psychosis?
A: Approximately 3 percent of the people in the U.S. (3 out of 100 people) will experience psychosis at some time in their lives. About 100,000 adolescents and young adults in the U.S. experience first episode psychosis each year.
Q: What is the connection between psychosis and schizophrenia?
A: Schizophrenia is a mental illness characterized by periods of psychosis. An individual must experience psychotic symptoms for at least six months in order to be diagnosed with schizophrenia. However, a person may experience psychosis and never be diagnosed with schizophrenia, or any other mental health condition. This is because there are many different causes of psychosis, such as sleep deprivation, general medical conditions, the use of certain prescription medications, and the abuse of alcohol or other drugs.
Q: What are the early warning signs of psychosis?
A: Typically, a person will show changes in their behavior before psychosis develops. The list below includes behavioral warning signs for psychosis.
- Worrisome drop in grades or job performance
- New trouble thinking clearly or concentrating
- Suspiciousness, paranoid ideas or uneasiness with others
- Withdrawing socially, spending a lot more time alone than usual
- Unusual, overly intense new ideas, strange feelings or having no feelings at all
- Decline in self-care or personal hygiene
- Difficulty telling reality from fantasy
- Confused speech or trouble communicating
Any one of these items by itself may not be significant, but someone with several of the items on the list should consult a mental health professional. A qualified psychologist, psychiatrist or trained social worker will be able to make a diagnosis and help develop a treatment plan. Early treatment of psychosis increases the chance of a successful recovery. If you notice these changes in behavior and they begin to intensify or do not go away, it is important to seek help.
Q: What does “duration of untreated psychosis” mean?
A: The length of time between the start of psychotic symptoms and the beginning of treatment is called the duration of untreated psychosis or DUP. In general, research has shown that treatments for psychosis work better when they are delivered closer to the time when symptoms first appear. This was the case in the RAISE-ETP study. Individuals who had a shorter DUP when they started treatment showed much greater improvement in symptoms, functioning, and quality of life than those with longer DUP. The RAISE-ETP project also found that average DUP in the United States is typically longer than what is considered acceptable by international standards. Future RAISE-related efforts are working to find ways of decreasing DUP so that individuals receive care as early as possible after symptoms appear.
Q: Do people recover from psychosis?
A: With early diagnosis and appropriate treatment, it is possible to recover from psychosis. Many people who receive early treatment never have another psychotic episode. For other people, recovery means the ability to live a fulfilling and productive life, even if psychotic symptoms return sometimes.
Q: What should I do if I think someone is having a psychotic episode?
A: If you think someone you know is experiencing psychosis, encourage the person to seek treatment as early as possible. Psychosis can be treated effectively, and early intervention increases the chance of a successful outcome. To find a qualified treatment program, contact your health care professional, or contact one of the national organizations listed on the Patients and Families page. If someone having a psychotic episode is in distress or you are concerned about their safety, consider taking them to the nearest emergency room, or calling 911.
Q: Where can I go to learn more about RAISE and psychosis?
A: You can listen to Dr. John Kane answer questions about first episode psychosis. You can hear Dr. Lisa Dixon talk about her personal interest in RAISE and about developing first episode psychosis treatment programs in communities. You can watch this video of Dr. John Kane talking about treating first episode psychosis. You can visit the Patients and Families page for more information.
Questions & Answers About Treatment
Q: Why is early treatment important?
Left untreated, psychotic symptoms can lead to disruptions in school and work, strained family relations, and separation from friends. The longer the symptoms go untreated, the greater the risk of additional problems. These problems can include substance abuse, going to the emergency department, being admitted to the hospital, having legal trouble, or becoming homeless.
Studies have shown that many people experiencing first episode psychosis in the United States typically have symptoms for more than a year before receiving treatment. It is important to reduce this duration of untreated psychosis because people tend to do better when they receive effective treatment as early as possible.
Q: What is coordinated specialty care (CSC)?
A: Coordinated specialty care (CSC) is a recovery-oriented treatment program for people with first episode psychosis (FEP). CSC uses a team of specialists who work with the client to create a personal treatment plan. The specialists offer psychotherapy, medication management geared to individuals with FEP, case management, family education and support, and work or education support, depending on the individual’s needs and preferences. The client and the team work together to make treatment decisions, involving family members as much as possible. The goal is to link the individual with a CSC team as soon as possible after psychotic symptoms begin.
Coordinated specialty care is a general term used to describe a certain type of treatment for FEP. There are many different programs that are considered CSC. In the United States, examples of CSC programs include (but are not limited to) NAVIGATE, the Connection Program, OnTrackNY, the Specialized Treatment Early in Psychosis (STEP) program, and the Early Assessment and Support Alliance (EASA). RAISE is not a CSC program. RAISE is the name of a research initiative developed and funded by the National Institute of Mental Health to test CSC programs. Navigate and the Connection Program were the two CSC programs tested as part of the RAISE Project. For more information, read, “Evidence-Based Treatments for First Episode Psychosis: Components of Coordinated Specialty Care.”
Q. What is shared decision making and how does it work in early treatment?
A: Shared decision making means individuals and their health care providers work together to find the best treatment options based on the individual’s unique needs and preferences. Clients, treatment-team members, and (when appropriate) relatives are active participants in the process. More information about how to participate in decisions with health care providers can be found on the SAMHSA website.
Q: What is the role of medication in treatment?
A: Antipsychotic medications help reduce psychotic symptoms. Like medications for any illness, antipsychotic drugs have benefits and risks. Individuals should talk with their health care providers about the benefits of taking antipsychotic medication as well as potential side effects, dosage, and preferences like taking a daily pill or a monthly injection. For more information about how to work with your health care provider, visit the SAMHSA website for materials on shared decision making.
Q: What is Supported Employment/Education (SEE) and why is it important?
A: For young adults, psychosis can hurt school attendance and academic performance or make it difficult to find or keep a job. Supported Employment/Education (SEE) is one way to help individuals return to work or school. A SEE specialist helps clients develop the skills they need to achieve school and work goals. In addition, the specialist can be a bridge between clients and educators or employers. SEE services are an important part of coordinated specialty care and are valued by many clients. Findings from RAISE-IES showed that SEE services often brought people into care and engaged them in treatment because it directly addressed their personal goals.
Q: Where can I go to learn more about treatment options?
A: Please visit the RAISE Patients and Families page for more information
Questions & Answers about the NIMH RAISE Project
Q: What is RAISE?
A: In 2008, the National Institute of Mental Health (NIMH) launched the Recovery After an Initial Schizophrenia Episode (RAISE) Project. RAISE is a large-scale research initiative that began with two studies examining different aspects of coordinated specialty care (CSC) treatments for people who were experiencing first episode psychosis. One study focused on whether or not the treatment worked better than care typically available in community settings. The other project studied the best way for clinics to start using the treatment program. The goal of RAISE was, and is, to help decrease the likelihood of future episodes of psychosis, reduce long-term disability, and help people to get their lives back on track so they can pursue their goals. The two RAISE studies are no longer enrolling participants. Current efforts are focused on sharing information learned from the original studies and looking for additional ways to improve the lives of people experiencing first episode psychosis. RAISE researchers are exploring new areas, such as identifying ways of decreasing the duration of untreated psychosis.
Q: Why is RAISE important?
A: The RAISE project was designed to study the best ways to intervene after a person begins to experience psychotic symptoms such as hallucinations, delusions, or disorganized speech. The goal is to change the downward spiral that can result from untreated psychosis, and help return people to a path toward productive, independent lives. Preventing negative events like dropping out of school, losing the ability to work, and losing contact with friends and family also has the potential to reduce indirect costs to society. The two RAISE projects studied the coordinated specialty care treatment model in a large number of real-world clinics, so results are relevant to many community treatment settings throughout the United States.
Q: What is the RAISE Early Treatment Program (RAISE-ETP)?
A: The RAISE Early Treatment Program (RAISE-ETP) was one of two research projects that made up the NIMH RAISE initiative. RAISE-ETP was a clinical trial that enrolled more than 400 people at 34 clinics across the U.S. It compared NAVIGATE, a coordinated specialty care treatment program for first episode psychosis, to care typically found in community clinics. The RAISE-ETP study team designed the NAVIGATE treatment program, and put it into practice at “real-world” clinics across the country, training existing clinical staff to provide NAVIGATE services. The goal of the clinical trial was to determine whether people in the NAVIGATE program had better outcomes than people at clinics that provided typical care. John M. Kane, M.D., vice president for behavioral health services of the North Shore - Long Island Jewish Health System and chairman of psychiatry at the Zucker Hillside Hospital led the RAISE-ETP study.
Q: What did we learn from the RAISE-ETP Study?
A: RAISE-ETP findings show that over two years, clients at the NAVIGATE clinics stayed in treatment longer; experienced greater improvement in their symptoms, interpersonal relationships, and quality of life; and were more involved in work or school compared to clients at the typical-care sites. NAVIGATE clients who had a shorter duration of untreated psychosis (DUP) when they started the study showed even greater improvements than those with longer DUP. RAISE-ETP researchers will continue to study factors that might influence clients’ outcomes. The study showed that coordinated specialty care for first episode psychosis can be used in a variety of U.S. community mental health clinics. For State Health Administrators, the tools and manuals that supported the NAVIGATE treatment program are available online.
Q: What is the RAISE Implementation and Evaluation Study (RAISE-IES)?
A: The RAISE Implementation and Evaluation Study (RAISE-IES) was one of two research projects that made up NIMH’s RAISE initiative. RAISE-IES explored how to implement a specially designed coordinated specialty care (CSC) treatment called the Connection Program. The researchers created two specialty care clinics for treating first episode psychosis, one in New York and one in Maryland. The project examined the clinical and administrative aspects of establishing such specialty care clinics, and developed tools and materials that others may use to start their own CSC programs. The study also looked at factors that affected clients’ and family members’ satisfaction with treatment, as well as clients’ outcomes after participating in the Connection Program. Dr. Lisa Dixon, M.D., professor of psychiatry at Columbia University in New York and the director of the Center for Practice Innovations at the New York State Psychiatric Institute led RAISE-IES.
Q: What did we learn from RAISE-IES?
A: RAISE-IES produced important information that helps us understand how to make a coordinated specialty care (CSC) treatment program work for both clinics and clients.
For state administrators, or those interested in starting their own CSC program, RAISE-IES developed tools and resources to help achieve this goal. For example, in addition to treatment manuals and program guides, RAISE-IES developed practical strategies for monitoring treatment fidelity. In other words, RAISE-IES developed ways of checking to see if the clinic actually provided the treatment program as it was intended to be delivered. Knowing how to do this is important since fidelity data help clinical administrators maintain high quality programs. Fidelity data also help clients and families know if they are getting the CSC services they expect and the data help those paying for CSC services, such as insurers, know if clients are getting the services they are paying for. To address the issue of how to sustain a program over the long term, RAISE-IES showed it was possible to partner with state mental health authorities in order to pay for CSC services and to expand the number of clinics available. For more information about the RAISE-IES program materials, visit the State Health Administrators/Clinics page.
The RAISE-IES study compared clients’ functioning at initial contact to outcomes two years later, showing promising results for individuals participating in the CSC program. Clients’ symptoms improved over time as did their work, educational and social lives. Finally, researchers showed that the CSC treatment model was appealing. Clients participated and stayed in the CSC program because they felt they were treated with warmth and respect and because they received effective services.