FORT WASHINGTON, Md. -- Early intervention to help young people with first-time psychosis is important, according to mental health providers at the National Council for Behavioral Health annual conference.
That's why expanding access to coordinated specialty care (CSC) models -- recovery-oriented, team-based approaches to helping identify and treat those dealing with first episode psychosis (FEP) -- is critical, they said at the conference last week. Experts focused on first episode psychosis, offered practical advice for providers, and described the challenges they experienced in implementing CSC.
About 100,000 young adults and adolescents experience first episode psychosis (FEP) in the U.S. each year, with onset typically occurring at ages 15-30.
Lisa Dixon, MD, MPH, professor of psychiatry at the Columbia University Medical Center in New York City, told ľֱ that researchers in other countries have known for decades about the importance of early intervention in FEP. In Australia, Canada, and the U.K., programs similar to CSC are widespread, she noted.
Dixon said her brother has schizophrenia, and he began showing signs of psychosis in his early 20s. "I truly believe that if he had access to [CSC] when he was first getting sick, that his life could have been very different," Dixon, who is also director of the Center for Practice Innovations at the New York State Psychiatric Institute, said in a phone interview.
The CSC model has six primary components:
- Community education and outreach
- Family support and education
- Pharmacotherapy and primary care coordination
- Supported employment and education
- Case management
- Psychotherapy
In the U.S. in 2008, the National Institute of Mental Health (NIMH) launched the Recovery After an Initial Schizophrenia Episode () project to study the impact of the program, a version of CSC, compared with usual care.
After 2 years, clients in the NAVIGATE program "stayed in treatment longer; experienced greater improvement in their symptoms, interpersonal relationships, and quality of life; and were more involved in work or school compared to clients at the typical-care sites," according to
The RAISE study showed that NAVIGATE participants with a shorter duration of untreated psychosis (DUP) had greater improvement than those whose psychosis was left untreated for longer.
Today, there are about 130 sites that provide some form of CSC, said Catherine Adams, MSW, owner and clinical director of Early Treatment and Cognitive Health (ETCH) in East Lansing, Michigan.
Adams recommended partnering with inpatient facilities, schools, faith-based communities, and the National Alliance on Mental Illness in order to bring patients to CSC.
She stressed that once centers start marketing their services, referrals will begin flooding in, but not all referrals will be a good diagnostic fit. "If it's not the right program for a person, you're not going to get the [positive] outcomes," she warned.
She also stressed that healthcare providers shouldn't "diagnose out of the gate." Using words like "psychosis" can scare people. Instead, listen to how they characterize their experience and reflect that back to them, Adams advised.
Once a participant is enrolled in CSC, it's important to constantly engage with them.
Raquel Carrera, LCPC, of Family Services, Road To Change Counseling and Consulting in Washington, noted that unlike in traditional medical services, you can't stop seeing patients with psychosis if they miss three appointments, as their symptoms may include memory loss and difficulty with focus.
Instead, CSC providers must follow up with participants with text message and email. Sometimes, it may even be necessary to meet clients in their home or the community, if transportation is a problem, Carrera added.
It's also important to maintain a connection with families, Adams said. "Be readily available, when parents anxiously call you and say 'What do I do?'" she said.
Another challenging but important element in the CSC model is the use of shared decision-making. This comes up often in the context of teenagers deciding whether or not to take antipsychotic medication.
Some young people will want to stop taking their medications because they don't like the way it makes them feel, while others are terrified of the experience of psychosis and will do anything to avoid it, Dixon told ľֱ.
While research shows that the chances of relapse are reduced by taking medication, for the model to work, participants need to know their values are being heard.
"Think about a teenager ... that's a person who is at the age where they most need to be respected, otherwise they're just going to walk. There's a small group of people who don't need [medication], Dixon said, adding that the problem is "we don't know who they are."
The decision to transition out of CSC should be based on assessing family supports, and evaluating the individual's development in terms of work, school, and social connections, Adams said.
ETCH uses "an alumni status" to signify this advancement, she explained. The care team will then step back and "hand the reins" to a peer, who is a member of the care team living with, and managing, mental illness.
"We always are clear that we can escalate [CSC] services again," she noted.
Finally proper reimbursement is key to an effective CSC model. In a fee-for-service model, there is a greater risk of staff "burnout" Carrera said. As a salaried member of a CSC care team, she said she's grateful her pay isn't contingent on how many people she meets with in a day.
On a broader policy scale, Dixon noted most CSC models are currently funded through block grants, which may not be sustainable. Dixon and other stakeholders are working with public and private payers to ensure that anyone who needs treatment for FEP can receive it.
Dixon is currently recruiting volunteers for an NIH-funded study of "," an online distance training strategy for implementing CSC. Ten sites will receive face-to-face training and 20 will receive remote training, she said.