Intense early intervention for schizophrenia leads to recovery
When the Places for People outreach team found Chandra Thirdkill, she was about 40 years old and had been homeless for two years. Her struggles, however, began as a teen. Everyone looked at her like she was ugly, she thought. No one liked her. She constantly got into fights.
Thirdkill dropped out of high school, turned to alcohol and drugs, and was in and out of jail as the fights grew to involve dishes, knives and bricks. Shooting and injuring her then-husband landed her in prison for three years.
That's when she was finally diagnosed with schizophrenia. Her cell mate told officers she was talking to people who weren't there.
After Thirdkill was released, she struggled to stay on her medications, was suicidal, had a child taken into state custody and had several hospital stays.
Gary Morse, associate executive director for Places for People, said that's when social service organizations often find those suffering with severe mental illness - after decades of missed education, severed family connections, lost jobs and stints in and out of prison or hospitals.
"So much of our system is developed around people with long-term critical mental illness," Morse said. "Our system's resources are devoted to that far end, and not very much to the beginning."
Schizophrenia - which makes it difficult to distinguish what is real from what is imaginary - is one of the most devastating of mental disorders. Experts say only about 15 percent of people with schizophrenia recover, meaning they are able to work, live on their own and have friends. About 10 percent will die by suicide.
The predominant treatment has been chronic disease management. The damage has been done, so doctors just try to manage the symptoms over time.
But results from a study published this month show that early and comprehensive intervention can alter the course of the disease. Just as importantly, it shows clinics how to implement and pay for it.
The study is an example of what is needed to more successfully treat and even prevent mental illness in America, said Robert Heinssen, director of the division of services in intervention research at the National Institute of Mental Health. "It's telling us that there is a better way of doing it, and we can do a better way."
The research was initiated and funded by the National Institute of Mental Health, and it gained steam as incidents such as the 2012 mass shooting at Sandy Hook Elementary got Congress interested in the intersection of mental health and violence.
Focus is on prevention again after Thursday's rampage at a community college in Oregon. Chris Harper-Mercer, 26, killed nine people before apparently killing himself.
"When you have psychotic symptoms that are left untreated, the risk for that kind of person being violent goes up considerably," Heinssen said. "But if that person is treated, the risk pretty much disappears."
Thirdkill, 47, remembers not being able to understand why she was so mad. "When I would get into a fight," she said, "I wasn't happy until I saw someone bleed."
She's one of the lucky ones. She now has her own apartment and spends her days attending group therapy classes and volunteering in the kitchen at Places for People, where she has many friends. If she had continued on her path, she said, she knows she'd be dead or in prison.
The increasingly destructive path that mental illness tends to follow is known as the kindling theory, after the small wood that sparks a campfire. Every time a person has a psychotic break, the brain's chemistry changes, making it more prone to future episodes.
About 10 years ago, countries with government health systems began having success with early intervention. Heinssen and others at the National Institute of Mental Health wondered how the effort could be put into action in the U.S., with its much more complex health system and funding sources.
They didn't just want a study to determine the most successful treatment, he said. They wanted research showing how providers could adopt the interventions in their clinics with all their barriers and challenges.
The National Academies of Sciences, Engineering and Medicine reported in July that well-researched interventions are not used routinely in clinics or even taught in training programs for mental health providers. The report blamed problems of access to care, insurance coverage and fragmentation of care.
Providers in the U.S. can more easily turn to the use of medications rather than evolving interventions like talk therapy, strategies to handle unhealthy thoughts, educating family members or help with going to school and keeping an apartment.
Outcomes have been dismal: Mental disorders are among the most common causes of disability. The suicide rate remains stagnant. Only half of people treated for depression reach recovery. Adults living with mental illness die an average of 25 years earlier than other Americans, largely due to treatable medical conditions.
"If you talk with people with mental illness, they will say to you, 'What I want is a job and a place to live,'" said Jane England, a Boston University public health professor. "For so long, we have been giving them something to help with their symptoms, but we need to do both. Housing is important in their recovery, and so is a job, a job that is satisfying."
In 2008, the National Institute of Mental Health put out a rare challenge to researchers: Develop an integrated treatment program for first-episode psychosis and show how to implement it. It was called the RAISE (Recovery After Initial Schizophrenia Episode) project.
"This is the first time we've ever used this framework, where we said, 'We want to you to build something that will work in the real world, so that at the end of the day, we can implement this broadly,'" Heinssen said. "That was really innovative."
They chose a proposal by Dr. John Kane, director of the Advanced Center for Interventions and Services Research in Schizophrenia at Zucker Hillside Hospital in New York. He created a comprehensive intervention that involved individualized therapy, family education, medications, and school or job support by a team of providers.
Thirty-four clinics in 21 states took part. The clinics had no experience in first-episode psychosis treatment and no affiliation with academic research programs. Half were trained to provide the comprehensive intervention and half developed their own approaches. They also got very little money as part of the study. Like clinics do in the real world, they cobbled together funding sources for services like case management, education and outreach.
Starting in 2010, researchers followed patients for two years. They found that those who had been ill for 17 months or less and received Kane's intervention had much healthier outcomes, Heinssen said. "This is a very important message ... if we offer the right services at the right time, we get a dramatic impact on initial recovery."
At the same time, Dr. Lisa Dixon, psychiatry professor at Columbia University Medical Center, studied the challenges and barriers to providing the care and worked out solutions. Her team developed resources, tools and training materials that could be shared with other sites. State mental health commissioners were also included in the research.
The findings have been so compelling that in 2014 federal legislation gave states $24.8 million to support the development of early psychosis treatment programs, with the RAISE project serving as a promising model.
By the end of this year, Heinssen said, 100 to 120 of these programs could be operating in the United States.
Thirdkill wonders how different things would be had she gotten help as a young woman. She could have been happier, she said. She could have understood what was happening to her. She might not have gone to prison. She might still be doing nursing work.
After she dropped out of high school, she received training as a certified nurse assistant through Job Corps and cared for patients in a nursing home. It was her escape, she said. "I loved making my patients smile."
Early Warning Signs Of Schizophrenia
- Hearing or seeing something that isn't there
- A constant feeling of being watched
- Peculiar or nonsensical way of speaking or writing
- Feeling indifferent to very important situations
- Deterioration of academic or work performance
- A change in personal hygiene and appearance
- A change in personality
- Increasing withdrawal from social situations
- Irrational, angry or fearful response to loved ones
- Inability to sleep or concentrate
- Inappropriate or bizarre behavior
Schizophrenia affects about 1 percent of the population, or about 2.5 million people in the U.S. Symptoms usually appear between the ages of 13 and 25. The majority of people with schizophrenia are not violent and do not pose a danger to others.
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