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Treatment Briefing: Coordinated Specialty Care for first Episode Psychosis

Jacquese Armstrong, Survivor Columnist

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In the past, the prognosis for a person experiencing psychotic symptoms, especially the diagnosis of schizophrenia, was grim. Patients would be told that recovery was impossible, medication would be for life and their lives would never be productive. We now know that recovery is possible; and Coordinated Specialty Care programs for First Episode Psychosis (FEP) such as the one at Rutgers University Behavioral Health Care (UBHC) in Edison, New Jersey, take recovery possibilities to a new level. For people that come through the program, “the best expectation is that a person recovers fully from their psychotic episode, meaning, there are no obvious symptoms and the person can resume the life they led before, including pre-episode levels of functioning in work, school, and social relationships.  This is a realistic option for some people because other people have achieved this,” said Dr. Steve Silverstein, Executive Director of Coordinated Specialty Care at Rutgers UBHC.

Silverstein goes on to explain that the majority of people treated with FEP in this way will experience at least one future episode. Knowing this, the goal of the program is to minimize the chance of relapse and maximize a person’s functioning. This is accomplished through the many different facets of the program.  The services offered include individual counseling, pharmacotherapy (medication), family psychoeducation and therapy (individual and group), substance abuse counseling, supported education and supported employment, peer support, assessment of symptoms, psychological functioning, and community functioning and outreach to community resources. Time spent in the program varies by individual, but international studies recommend that a person remain with an FEP treatment team for three to five years, Silverstein said. After that time, care may no longer be necessary.

Initially developed in Australia over 15 years ago, Coordinated Specialty Care programs have been in operation in other areas of the United States for close to 10 years in a few cases, Silverstein explained. For the most part though, it is only in the last two to three years—with the mandate from Substance Abuse and Mental Health Services Administration (SAMHSA) that part of state mental health block grants must be used to establish programs for people recovering from a first psychotic episode—that most states are now setting up these programs. The key to the participant’s success in a FEP program is that the person be seen there within two years of their first episode. The longer a person has been experiencing psychotic symptoms without any treatment, the slower recovery will be. “It appears that continued untreated psychosis is bad for the brain, and makes it more difficult for the brain to recover normal function even with treatment. This is why it is essential to identify people early and to make treatment available,” according to Silverstein.

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Though no longer the case, the general expectation some years ago was that a person with psychotic episodes would continue on antipsychotics the rest of their lives. Attempting and maintaining people in a long-term program like FEP, with or without medication reflects a change in thinking brought about by many factors: self-advocacy by those who were largely or fully recovered speaking out about the realities of living with a mental illness; and an accumulation of long-term data over 15-30 years that demonstrated that many people with psychotic episodes can go on to lead independent and productive live, sometimes not needing any medication at all. The general thought now about a person with a psychotic illness is that nobody should assume that it will be necessary to take antipsychotics medication for a lifetime. Studies indicate that at least 40% of the people with a psychotic disorder can live without medication, and function well in the long-term, even 20 or 25 years after an initial diagnosis. Of course, any change in medication should always be discussed with your doctor.

In the future, studies on the effectiveness of FEP programs will be trying to determine: 1) how to identify people who are likely to have the fullest recoveries so that they do not need to be on medication any longer than they have to, and 2) what factors are involved in promoting the best recoveries, and whether this information can be used to help more people achieve them.

For general information and referrals, you can contact Alyson Hague, L.C.S.W. at haguead@ubhc.rutgers.edu, or 732-235-2868.

Chandra C.