A few years ago, a young man and his family came to the Connecticut Mental Health Center (CMHC) to seek help. The college student was having troubles that seemed to go beyond the run-of-the-mill concerns of a young adult.
“It was clear to us that the reason he could not keep up in school was not depression or anxiety, but an emerging psychotic disorder,” says Vinod Srihari, MD, HS ’03, FW ’05, associate professor of psychiatry.
The young man was hearing voices, a classic sign of schizophrenia. The voices commented on whatever he was doing in the moment, disparaged his appearance, and ordered him to do things he didn’t want to do.
Srihari’s first step was to make the patient feel comfortable with treatment, which included psychotherapy and antipsychotic medication to quell the voices. He also helped the young man’s family understand what was happening.
Between four and five months passed from the onset of symptoms to treatment. This may seem like a long time, but Srihari says average delays in typical care settings can be much longer. Though this pathway to treatment was relatively short, Srihari believes this period, called the duration of untreated psychosis (DUP), is still too long. This is an ongoing area of research, but studies have linked early treatment to better outcomes.
For the past four years, Srihari has led MindMap, a study funded by the National Institutes of Health, to test that theory. Previously, he launched an interdisciplinary program called Specialized Treatment Early in Psychosis (STEP), which demonstrated that a specialty team-based model of care resulted in better outcomes.
Srihari launched STEP in 2006, after securing approval from the state of Connecticut to provide care to all youth with new-onset psychosis at CMHC, regardless of insurance coverage. The center was already open to those on Medicaid or without insurance, and STEP was permitted to care for those with various commercial insurance plans. STEP reflects a collaboration between the Connecticut Department of Mental Health and Addiction Services and the Department of Psychiatry. “We start a treatment plan that is focused on helping them comply with medication and stabilizing their symptoms, and we start work on getting them back to work or school,” Srihari says.
Each person has at least a one-in-100 chance of developing schizophrenia in their lifetime. Without early and effective treatment, the symptoms can render them unable to work, study, or maintain friendships. “This is a disorder that punches well above its weight in terms of burden, even though it is not as common as other mental illnesses,” Srihari says. Its cause remains a mystery, although researchers have identified genetic and environmental risk factors.
First termed schizophrenia by early 20th-century Swiss psychiatrist Eugen Bleuler, it is now considered a group of disorders that share signs (observable by others) and symptoms (subjective experiences) that include hallucinations, delusions, and the inability to take pleasure in everyday life, trouble focusing, and loss of working memory.
“Schizophrenia spectrum disorders denote a very diverse group of what are probably many different diseases with distinct causes,” Srihari says. “Nevertheless, this is still a meaningful construct that can tell us a lot about the kinds of experiences people are undergoing, the challenges they are likely to have, and the treatments that will be helpful.”
Because schizophrenia strikes when people are young, usually in adolescence or early adulthood, it can be hard to distinguish the symptoms from garden-variety teenage angst.
“They may withdraw socially from their friends. They might struggle in school,” Srihari says. “It can look like depression or anxiety, which they may be experiencing, but psychotic symptoms can be less evident, especially when individuals may feel less comfortable talking about unusual subjective changes.”
Getting patients to treatment can be a challenge. Some may not want to admit that they have a mental illness, or fear that they’ll be locked up. That period between diagnosis and treatment—the DUP—is crucial, Srihari says, because that’s when patients are at the highest risk of aggression, suicide, losing jobs, losing relationships, and dropping out of college.
“There is a subjective journey within which the young person and the family come to figure out this is an illness and professional assistance is necessary,” Srihari says. “It can begin in a jarring manner, with a police officer finding you on the street and taking you to the emergency room or to jail. However, if you’re in a state like Connecticut, you may have a jail diversion officer who says you don’t belong in jail, you need treatment.”
To shorten the pathway to treatment, Srihari and colleagues launched the MindMap study in 2015. MindMap, which covers New Haven and nine neighboring towns, is based on Norwegian research findings that showed earlier access to treatment resulted in better outcomes. MindMap has three prongs: first, a social media campaign raises awareness of psychosis among young people, their friends and family, clinicians, and others; second, the program reaches out to community stakeholders who are in contact with adolescents and young adults—such as mental health providers, primary care providers, clergy, college counselors, police, and community groups; third, MindMap tracks how many phone calls come into the program and how many calls transpire between first contact and care. There’s no difference in the care provided—the variable is getting patients into treatment quickly.
A control program, which offers treatment but no campaign to reduce waiting time, is underway in Boston. The New Haven program ended in February 2019, but interim results are promising, Srihari says. Two and a half years in, the median delay from onset to prescription of an antipsychotic dropped from about 150 days to 40 days.
“It remains to be seen—if we get our act together and provide early intervention across the U.S.—whether it will change the face of chronic schizophrenia,” Srihari says. “The real gains will be realized over a 20-, 30-, 40-year lifespan, when our hope is that people are less likely to be on disability and will retain their employment, retain their insurance, and retain their families.”
As a success story, Srihari points to the young man who came to STEP a few years ago. After two years, he “graduated” out of STEP and now receives treatment from a community physician. He will need treatment, including antipsychotic medication and psychotherapy, for the rest of his life. Yet his symptoms have receded, and he has a job that involves helping others get rehabilitative services.
“For us, this is an arc that has been fulfilling,” Srihari says. “He has a job, he has commercial health insurance—he is a contributing member of society and does not need intensive or specialized treatment with us anymore.”