Quickly identifying people who have suffered a first schizophrenic episode and treating them with coordinated, sustained services sharply boosts their chances of leading productive lives, according to a major study being published Tuesday. And the treatment can be provided in a typical community mental health setting, the researchers concluded.
The study’s findings offer new hope for individuals with the severe mental illness. Although it affects only about 1 percent of the population, far less than depression, schizophrenia and its associated disorders often have a devastating, lifelong effect on individuals and families.
Schizophrenia often consigns people to homelessness, incarceration and unemployment. The hallucinations, delusions and often incoherent speech that mark it have proved notoriously difficult to combat with standard treatments, which for many people include only medication and individual therapy.
“The United States is really a decade behind the rest of the world in doing what we already know works,” said Vinod Srihari, an associate professor of psychiatry at the Yale School of Medicine, who was not involved in the study but has conducted similar research. With the new findings, “it’s possible now to say that in many community settings . . . it is possible to deliver this kind of coordinated care and the outcomes are good.”
The study, called Recovery After an Initial Schizophrenia Episode (RAISE), found that people who are provided years of “coordinated specialty care” in community clinics had a greater quality of life, more involvement in work and school, and less ongoing pathology than others who received typical care.
Although this approach is more expensive and labor-intensive, the researchers suggest that it may be cost-effective in the long run. The approach includes psychotherapy, medication, supported employment and education, help for families of the mentally ill person, and case management. Much of the effort can be funded under insurance and government reimbursement policies, the researchers note.
The study confirms previous research results that the most critical element of treatment may be starting it as quickly as possible after a first psychotic episode. It found “a substantial difference” in effect for patients who began treatment less than 74 weeks after their first symptoms — the median length of time that people in the study went untreated after the onset of psychosis.
“Doing the right thing — and doing the right thing at the right time — that’s the key finding,” said Robert Heinssen, director of the division of services and intervention research at the National Institute of Mental Health, which funded the $25 million, six-year study. “That is guiding our efforts going forward. That has become the north star of where we’re going.”
Maggie, a 20-year-old nursing student in the Baltimore area, began hearing voices at age 15 that made terrifying suggestions — and still do. The voices told her that cutting off her finger would help her live longer, and they suggested that she climb a tall tree and try jumping from limb to limb, she recounted last week. At other times, they told her she was worthless and should die.
But no treatment worked until she enrolled at one of the RAISE sites, the Walter P. Carter Carruthers Clinic at the University of Maryland Medical Center in Baltimore.
The intensive approach to her illness made the difference, she said. Her treatment team included her as an equal and worked with her parents. It helped keep her in high school and college, and when an adviser suggested that nursing would be too challenging a major, Maggie’s therapist called to disagree.
The program helped her “learn to treat the voices like they’re not a threat” — that while they may never go away, “they are not real,” said Maggie, who asked that her last name not be used to protect her privacy. “Now, I just kind of laugh at them, because they’ll say the most ridiculous things.”
Collin Spencer of Eaton Rapids, Mich., was treated at a RAISE site after he began to think billboards and television programs were sending him messages that he should run away from home to protect his family. Medication has suppressed the delusions, and the help the 22-year-old received has allowed him to maintain two jobs, including one as a peer-support specialist in a mental health clinic.
Schizophrenia commonly develops between the ages of 15 and 25, and about 100,000 teens and young adults suffer a first psychotic episode every year in the United States. Eighty to 90 percent of people with the disorder are unemployed, 20 percent are homeless, and 17 percent are in jail or prison, according to federal statistics.
The RAISE study, led by John M. Kane, chairman of the Psychiatry Department at Hofstra North Shore-LIJ School of Medicine, included 404 people treated at 34 clinics across the country after a first psychotic episode. Personnel in half of the clinics had been trained to deliver the coordinated therapeutic approach, while mental health workers in the other half delivered traditional care.
Its results are being published in the American Journal of Psychiatry.
A 2014 study funded by the Robert Wood Johnson Foundation attempted to reach young people with the same kinds of comprehensive therapy before their first psychotic episodes. That study also showed that young people who received comprehensive treatment were more likely to remain in school or in their jobs.
But Kane said it is extremely difficult to identify people who will develop schizophrenia before a first episode of psychosis. Only 10 to 20 percent of people predicted to develop the illness actually do, he said.
Research shows that about 10 percent of people who suffer a psychotic episode will do well without treatment and 10 to 15 percent are almost impossible to treat, Srihari said. The vast majority of people with schizophrenia would be candidates for the RAISE approach, he said.
Cost remains a challenge, because some of the services offered by the comprehensive care model are not reimbursed under traditional fee-for-service arrangements, Kane and his colleagues said. Last week, though, three federal agencies issued guidance to help states design benefit packages for treatment of first-episode psychosis using Medicaid and mental health block-grant funds.