Each year, about 100,000 American adolescents and young adults, their lives and dreams ahead of them, experience their first episode of psychosis, a symptom of schizophrenia and other mental illnesses characterized by dramatic changes in perception, personality, and ability to function . This often-terrifying experience, which can last for months, will prompt some to seek help from mental health professionals, whose services can in many situations help them get back on track and reduce the risk of relapse. Still, for far too many young people and their families, the search for help is riddled with long delays, contradictory information, and inadequate treatment in a mental health system whose resources have been stretched thin.
There’s got to be a better way to reach more of these young people, and, now, results of a major NIH-supported clinical study point to a possible way to get there . In this large study, published in the American Journal of Psychiatry, teams of mental health specialists partnered with young people and their families to create individualized treatment plans. After two years of follow-up, researchers found that this personalized, team-based approach to care had helped more young people stick with treatment, feel better about their quality of life, return to school and work, and seek follow-up help than standard care involving a single clinician.
Many studies show the longer that people with psychotic episodes go untreated, the harder it is to stabilize their symptoms and the more problems they develop. A common presentation is schizophrenia, a persistent, severe brain disorder that often can be diagnosed only months or even years after a first psychotic episode. Schizophrenia affects 1.1 percent of Americans ages 18 and older, and currently accounts for about 30 percent of all spending on mental health treatment .
To help people suffering from schizophrenia and other mental disorders that cause psychotic symptoms, NIH’s National Institute of Mental Health launched the Recovery After an Initial Schizophrenia Episode (RAISE) project in 2008. One arm of RAISE is its Early Treatment Program (ETP), which seeks to identify the best ways to treat a first psychotic episode.
The ETP team, led by John Kane, a research psychiatrist at The Zucker Hillside Hospital, Glen Oaks, NY, spent a year consulting with experts and reviewing the medical literature to craft and pilot a comprehensive, evidence-based treatment strategy that would be workable within the U.S. healthcare system. The result was a program of coordinated specialty care that aims to link young people with a team of specialists soon after their psychotic symptoms begin. The program, called NAVIGATE, features four core services:
- Personalized medication management. Health-care professionals work with the patient to select and administer the right prescription medication at the right dosage to manage the psychosis.
- Family education. Health-care professionals and health educators meet with the patient’s family members and help them better understand mental illness and the challenges ahead.
- Individual therapy. The patient meets with a health-care professional to set personal goals, enhance wellness, and learn more about psychosis and its treatment.
- Supported education and employment. The patient partners with a counselor to find employment or enroll in school as soon as possible. Services are then provided each week at work or school to help them stay on track.
The group’s next challenge was to test the NAVIGATE model at 34 community mental health treatment centers in 21 states. Over time, most centers successfully implemented and sustained NAVIGATE using their regular resources, along with research funding to support up to 5 hours a week per patient for educational and employment counseling.
A total of 404 teenagers and young adults, all of whom had experienced a single episode of psychosis and taken less than six months of antipsychotic medications, enrolled in the two-year study. Each volunteer was randomized to receive either the team-based NAVIGATE intervention or standard community care, which usually consisted of treatment determined by one clinician. The participants, who ranged in age from 15 to 40, spanned various races, ethnicities, and genders.
Researchers found that NAVIGATE participants stuck with treatment for 23 months, on average, compared to 17 months for those in standard care. This longer period of treatment represents a step forward, because one of the biggest obstacles to the effective treatment of first-episode psychosis is that many patients stop treatment too soon. Young people taking part in NAVIGATE also reported an overall higher quality of life, indicating a more positive outlook toward family, a purpose in life, and engagement in society. Many participants and their family members also indicated that one of the things they liked most about NAVIGATE was its highly personalized, team-based approach to delivery of care and follow-up.
A great example is the Simpson family, which lives just outside of Lansing, MI. At age 17, son Collin was hospitalized to work through his first psychosis, receiving what his father Tom describes as “generic care.” When Collin was released from the hospital, Tom says he felt utterly unprepared to arrange the aftercare and take steps to reduce risk of a relapse. He tried to find a psychiatrist in Lansing for his son, but he couldn’t locate one who was available to see new patients. That’s when Tom’s sister, who worked in community mental health, suggested that Collin enroll in NAVIGATE.
Tom calls NAVIGATE’s individualized, team-based approach “a godsend.” Collin not only received timely psychiatric care and careful monitoring of his medications, he also got help to prepare and pass his General Educational Development (GED) test, guidance in drafting his resume, and assistance in finding a job. Meanwhile, Tom and other members of the family participated in the NAVIGATE educational program and got their questions answered about psychosis, schizophrenia, and what they should and shouldn’t expect from Collin. “We would have been clueless if they hadn’t brought us all in as a group,” Tom says. “It was a critical part.”
How’s Collin doing today? His dad says his son is doing great: holding down a full-time job, playing in a band, and “is really a fully functional member of society.” As for his future goals, one is to become a peer-support counselor to help others come through their psychosis and get back on track.
Importantly, the NAVIGATE researchers found that the sooner young people with first-episode psychosis received coordinated specialty care, the better they fared. Still, there is much room for improvement: the median time of untreated psychosis before enrollment in NAVIGATE was nearly 1½ years, which is consistent with previous studies. Why such a lag? Part of the problem is that young people and their families can be wary of seeking help, possibly concerned about other people’s misperceptions about mental illness.
My hope is that, informed by results of this study and other NIH-funded research, more people will be empowered to seek prompt treatment for first-episode psychosis and other mental health disorders. In fact, the resources to help them are already in place in many areas of the nation. Congress recently allocated funds to subsidize treatment for first-episode psychosis, and, since 2014, 32 states have moved toward establishing comprehensive specialty care to enable earlier intervention.
 Schizophrenia: a concise overview of incidence, prevalence, and mortality. McGrath J, Saha S, Chant D, & Welham J. Epidemiol Rev 2008, 30:67-76.
 Comprehensive Versus Community Care for First Episode Psychosis: Two-Year Outcomes From The NIMH RAISE Early Treatment Program. Kane JM, Robinson DG, Schooler NR, Sint KJ, John M, Heinssen RK, et al. Am J. Psych [Epub ahead of publication]
 U.S. Spending For Mental Health and Substance Abuse Treatment, 1991-2001. Mark T, Coffey R, Vandivort-Warren R, Harwood H, & King E. Health Aff. 2005 Jan-Jun Suppl Web Exclusives, W5-133-W135-142.
Schizophrenia (National Institute of Mental Health/NIH)
John Kane (The Zucker Hillside Hospital, Glenn Oaks, NY)
NIH Support: National Institute of Mental Health