A new clinical service offers hope—and gold standard mental health care—for young people at risk of developing psychosis.
The Psychosis Risk Syndrome Clinic, known as PRIME, works with young people ages 12-25 in the “prodromal” phase, a period of time before a person experiences the full manifestation of psychotic disorder symptoms, known as “frank psychosis.”
Until now, PRIME has exclusively been a research clinic. For twenty years, director Scott Woods, MD and his colleagues have studied how to predict who is likely to develop disorders like schizophrenia and how to prevent that from happening.
Thanks to a federal grant from the Substance Abuse and Mental Health Services Administration (SAMHSA), in January 2019 PRIME began offering a new clinical service in addition to its research.
“We’re very enthusiastic about our expansion,” said Dr. Woods, Professor of Psychiatry at Yale. “We’ve been working toward this for a long time and it’s wonderful to see it come together. My most important job now is to make sure the program doesn’t go away when the grant ends.”
The patient profile
According to PRIME’s research, only about 30% of prodromal patients will go on to develop frank psychosis. Dr. Woods predicts this number could be substantially lower with appropriate treatment.
The typical PRIME patient has been doing fairly well until the last year or so. Barbara Walsh, PhD, PRIME’s clinical coordinator, says many prodromal young people have already been receiving mental health care—“bouncing from agency to agency,” as she puts it. Often, they have not yet received an accurate diagnosis, and they and their families are beginning to experience burnout.
“I think we can help with that,” Dr. Walsh says. “If we can identify them correctly early on, they won’t lose the support system of their family which is so crucial.”
Unlike individuals with frank psychosis, prodromal patients recognize that they feel different.
“The most common thing I hear from our patients is the beginning of a sub-threshold of paranoia,” says Dr. Walsh. “People will say, ‘my friends aren’t really my friends, they’re pretending to be my friends…the teachers are picking on me…people are watching me more than they watch other people.’ That sub-threshold of paranoia or magical thinking, often with a drop in their academic or social functioning and some disorganized communication—those are the early signs.”
“What becomes very distressing to the young people is their thought process,” Dr. Walsh continues. “They will ask, ‘If I know this isn’t real, why can’t I control it? Why doesn’t it go away?’ Those worries often take on a life of their own.”
The SIPS interview
The PRIME clinic uses an assessment called the SIPS—Structured Interview for Psychosis-risk Syndromes—to determine an individual’s psychosis risk. The SIPS, considered one of two gold standard instruments in the world for this purpose, was developed and researched at PRIME by Dr. Woods in collaboration with Thomas McGlashan, MD. Over time, multiple studies have confirmed the reliability and validity of the SIPS.
The SIPS interview takes two hours to complete. While its duration means the tool is expensive to administer, Dr. Woods believes its high degree of accuracy makes it more cost-effective in the long run: SIPS reduces waste by getting the right people into the right treatment quickly. At PRIME, patients who meet the criteria as defined by SIPS are eligible for up to two years of treatment.
In addition to being an accurate diagnostic tool, the SIPS is also a powerful clinical tool. “It really starts the normalization process and opens the door to treatment,” Dr. Walsh explains. During the SIPS interview, young people are often amazed to learn that others have experiences just like their own. “I tell them, ‘Yes, this is what I do all day, every day,’” Dr. Walsh smiles, “and you can just see their stress level reduce.”
Treatment at PRIME
Psychosis risk syndrome is a “stress level vulnerability disorder,” meaning that as a young person’s stress level rises, so do their symptoms. Youth stress is intimately connected to family stress. PRIME’s first treatment goal is to reduce stress through psycho-education for patients and their families.
For many people, psycho-educational treatment will be enough to reduce or eliminate symptoms. PRIME enrollees who do not recover with psycho-education will be eligible for Cognitive Behavioral Therapy (CBT) focusing on the early symptoms of psychosis. CBT has been shown to be effective with prodromal patients; it is relatively intensive and requires a significant commitment on the part of patients and families. There is no medication specifically for the prodrome (Dr. Woods notes “that's a very active area of research”), but for enrolled patients for whom it might be helpful, PRIME is able to offer medication for other psychiatric symptoms such as anxiety and depression. PRIME is based at Connecticut Mental Health Center, a public-academic partnership of the State of Connecticut Department of Mental Health & Addiction Services and the Yale Department of Psychiatry.
PRIME uses a phone screening process to identify patients who are appropriate for the SIPS interview. Sometimes, the clinic receives calls about young people who have already developed frank psychosis. Staff will refer those patients to the STEP Clinic—Specialized Treatment in Early Psychosis. STEP, also based at Connecticut Mental Health Center, collaborates closely with PRIME to help make a person's transition into appropriate clinical care as seamless as possible.
To meet the growing demand for the clinic’s services, PRIME has hired new clinical providers and plans to employ, on a part-time basis, two young graduates of the PRIME research clinic. These young people will meet at least once with every patient and family to share their experiences and offer peer support and encouragement.
In addition to providing overall program direction and serving as one of PRIME's attending psychiatrists, Dr. Woods is working to create a financially sustainable model, necessary for the clinic to continue after the SAMHSA grant ends in four years. Patients at risk for psychosis are eligible for PRIME services regardless of their insurance status and may reside anywhere in the U.S. (as long as they are able to get to the clinic for treatment).
Community outreach and education
Part of PRIME’s mission is to conduct community-level education about the prodromal period and the clinic’s free service. To that end, Dr. Walsh travels frequently within Connecticut and beyond to youth-centered locations such as schools, mental health care agencies, and medical practices. PRIME receives the majority of its referrals from schools and mental health clinics. In her outreach, Dr. Walsh has already seen an increase in the number of mental health professionals who want to be trained in how to use the SIPS.
The power of early intervention
As PRIME’s research has shown, recovery is possible—especially with very early intervention.
“When patients are younger, when they’re in the early stage of development of an illness, their brains are more plastic and resilient, more readily restored to normal,” explains Dr. Woods. “Unfortunately, after the illness has set in for some time, it’s more difficult.”
“I think that we, as a society, should find a way to invest more in the early courses of mental health disorders,” he continues. “If we invested more now, we would probably save in the long run. I’m not suggesting that we shift resources away from the people we already have. I’m suggesting that we invest more in the early course.”
For Dr. Walsh, working with PRIME patients is a joyous experience. “They’re like sponges,” she says. “Everything you tell them, they listen. I’ve seen so many go on to regroup and live their lives. As a clinician, it’s rewarding to see that you really altered the course of someone’s illness. They don’t get so ill, and when they rebound, they are much closer to their pre-morbid level of functioning. It’s wonderful to see.”
With the SAMHSA grant, Dr. Woods hopes to expedite the acceptance of SIPS into the mainstream and believes this will make a tremendous difference for patients, families, and mental health practitioners. In the long term, as more providers around the country and the world learn to identify prodromal patients and offer appropriate care for them, the hope is that fewer young people will develop frank psychosis. For Dr. Woods and his team, that would be the greatest outcome: to reduce the burden of psychotic illness on patients, families, and society.
To reach the PRIME Clinic, call (866) AT PRIME (866-287-7463). To inquire about community outreach and education, email firstname.lastname@example.org.