Researcher's work in early identification of mental illness attracts
$12.4 million national program grant from Robert Wood Johnson Foundation
(April 10, 2007) -The Robert Wood Johnson Foundation (RWJF) today announced that it will establish a national program office here for the early detection of youth mental illness, thanks to research conducted over the past six years by Maine Medical Center and Spring Harbor Hospital psychiatric researcher William R. McFarlane , MD.
A world-renowned researcher, McFarlane has spent more than 30 years investigating ways to improve quality of life for individuals with serious mental illness, such as schizophrenia and other psychotic disorders.
The four-year, $12.4 million grant from the nation's largest philanthropy devoted exclusively to health and health care will extend McFarlane's Portland Identification and Early Referral (PIER) Project, a research and clinical treatment program that has shown great promise in preventing the onset of schizophrenia and other serious psychiatric illness among young people in Cumberland County since 2000. The grant also funds three additional research sites: Sacramento, California (led by the University of California, Davis); Ypsilanti, Michigan (led by the Washtenaw Community Health Organization); and Salem, Oregon (led by Mid-Valley Behavioral Care Network).
RWJF's national program office, under the direction of McFarlane, will be called the Early Detection and Intervention for the Prevention of Psychosis Program (EDIPPP).
McFarlane set out six years ago to improve Cumberland County's ability to identify early symptoms of psychosis in young people, with start-up and operational funding from The Betterment Fund, The Bingham Foundation, the Frances Hollis Brain Foundation, the Maine Health Access Foundation, Unum Provident, the Maine Department of Health and Human Services, the Center for Mental Health Services, and the National Institute of Mental Health.
Youth between the ages of 12 and 25 who have early symptoms of a psychotic disorder but have not yet developed an illness are the focus of the PIER program. Participants and their families receive one of two treatment plans. The experimental plan offers ongoing evidenced-based, psychosocial support and education, treatment, and medication. The comparison plan, designed for youth at much lower risk of illness, provides careful monitoring, support, and referral for further treatment, as needed.
McFarlane says the expected rate of a psychotic episode occurring among individuals who have early symptoms of a psychotic disorder is 30 to 40 percent during the first year. Yet of the more than 100 young people enrolled in PIER so far, only 14 percent have experienced a full-blown psychotic episode. At the same time, participants on average experience both a reduction in psychiatric symptoms and improved overall functioning.
"Most of the young people in our program have gone on to complete high school, enroll in college, or secure meaningful employment," says McFarlane. "These achievements are very rare for a typical young person who has been diagnosed with schizophrenia and is in the throes of the illness. This is the strongest evidence to me that PIER works."
Approximately 2 to 3 percent of youth and young adults develop schizophrenia or a severe, psychotic mood disorder, with most cases developing after age 12.
Alex Myhaver of Portland struggled with a life-altering episode of schizophrenia after graduating summa cum laude from the University of Southern Maine in 1999-prior to the launch of PIER. He spent the next three years of his life without medication or a place to live and was eventually committed to the state psychiatric hospital in Augusta.
Now in his thirties, fully engaged in his recovery, and employed, Myhaver gives hope to others by sharing his personal story about serious mental illness. Still, he says, "I wish that a program like PIER had existed when my symptoms first appeared, especially when I think about how much suffering teens and their families have to endure with this illness."
Psychotic illness is often crippling: 75 percent of those who have schizophrenia go on to develop a disability, and only a small percentage are gainfully employed. McFarlane says the estimated lifetime societal cost of supporting an individual with schizophrenia or schizoaffective illness is $10 million. Worse, an estimated 12 to 15 percent of people who suffer from psychosis commit suicide.
"PIER is pioneering a critical endeavor to protect young people from the tremendous anguish and devastation of psychotic illness," says Jane Isaacs Lowe, Ph.D., senior program officer at RWJF. "The new national program will test this innovative and promising approach so that we can say with confidence that it works and should be replicated across the country."
The PIER model is founded in part on community-based prevention programs that have been successful in Australia, the UK, and Scandinavia. All operate on the hypothesis that schizophrenia, when identified and treated during the "prodrome," or earliest sign of symptoms, can be prevented from developing into a lifelong, disabling illness. All also combine public education, professional training, and clinical intervention to help stem the progression of psychotic illness in the youth population.
"PIER is built on the notion that an ounce of prevention is worth a pound of cure," McFarlane notes.
The PIER approach is unique among research of this type in three important ways. First is what McFarlane describes as its "systematic approach" to educating the community about early symptoms in youth, such as declining performance in school coupled with increasing isolation, paranoia, grandiose thinking, or complaints of hearing voices.
PIER staff has trained nearly 5,000 people in Cumberland County-school and college counselors and nurses, teachers and college professors, police officers, community therapists, clergy, pediatricians, and young people themselves-on recognizing these early symptoms.
The program also has established a website, www.preventmentalillness.org, which is promoted to youth of Cumberland County, mostly with the help of the public schools.
The outreach appears to be working: Today, nearly 50 percent of PIER's referrals come from families and schools.
"Our schools were a logical place for this training to happen," says Mary Jo O'Connor, superintendent of Portland Public Schools. "We dialogue with thousands of kids each day, so it made sense for us to learn more about how to spot this illness early."
O'Connor not only ensured that teachers, counselors, and health care employees of the school district were trained, but she also enabled students to learn more about the illness by including the training in the 10th grade health class curriculum.
"Dr. McFarlane and his staff told us that the people who first notice that something's not quite right with a teenager are their own peers," O'Connor notes. "We also thought this was an important educational focus because schizophrenia is so strongly associated with youth suicide."
A second critical component of the PIER approach is immediately and consistently engaging the families and friends of youth receiving treatment. This can include families supporting one another and sharing successes or friends learning how to help reduce stimuli for the young person. The systematic application of family psycho-educational intervention-an area in which McFarlane is considered the nation's leading expert--is a hallmark of the program.
State Representative Jane Eberle (D-South Portland/Cape Elizabeth), the parent of a PIER client, says, "We were incredibly fortunate to find this program. It has helped our son and our entire family deal with a critical health issue."
The third unique component of the PIER approach is its use of evidence-based supported- employment strategies, which include vocational education and career planning for the young person and job-design consultation and support for employers.
The importance of PIER's employment assistance is not lost on Eberle. "We need to help our young people realize their talents and full potential as productive members of our communities," she says.
Meanwhile, McFarlane believes he has finally achieved the goal he aimed for 30 years ago: to put the concept of early intervention and prevention of serious mental illness in the public consciousness, both in Maine and perhaps throughout the nation.
"Who would have thought, even a decade ago, that we would be talking about preventing a debilitating mental illness and in essence giving individuals and families their lives back?" McFarlane says. "From a professional standpoint, it is both gratifying and humbling to receive this vote of confidence from The Robert Wood Johnson Foundation. From a personal standpoint, there is little more satisfying than offering the promise of a better life to so many young people and their families."
A program of the Center for Psychiatric Research within the Maine Medical Center Research Institute (www.mmc.org), PIER is managed by Spring Harbor Hospital, a nonprofit psychiatric treatment network that serves thousands of individuals each year, including hundreds of youth who experience either first-time or episodic psychosis. PIER also is part of the Glickman Family Center for Child & Adolescent Psychiatry, the regional center of excellence for youth psychiatry. To learn more, call 1-866-857-6644 or visit www.springharbor.org .
The Robert Wood Johnson Foundation focuses on the pressing health and health care issues facing our country. As the nation's largest philanthropy devoted exclusively to improving the health and health care of all Americans, the foundation works with diverse groups of organizations and individuals to identify solutions and achieve comprehensive, meaningful, and timely change. For more than 30 years, the foundation has brought experience, commitment, and a rigorous, balanced approach to the problems that affect the health and health care of those it serves. When it comes to helping Americans lead healthier lives and get the care they need, the foundation expects to make a difference in your lifetime. For more information, visit www.rwjf.org .