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By Yen Duong
When 21-year-old Dylan Mathis was in 11th grade, he started seeing gory hallucinations of strangers abusing him, nonexistent siblings and his actual pets.
“It would be, like, really scary,” Mathis, who lived in Florida at the time, said. After experiencing more psychotic events and symptoms such as mania and depression, he went to a psychiatric hospital and started taking medications, kicking off a years-long cycle of going in and out of the hospital.
“All they did was observe me and get me on a medicine that would stabilize me, and they wouldn’t see the after-effect of that medication. [It would] stabilize me for like that few days, and then maybe two weeks later, it would be back to square one.”
For a change of scene, Mathis moved in with extended family in Charlotte. He spent much of 2017 trying to manage his symptoms on his own but ended up at Atrium Health Kings Mountain that fall for a two-week stay.
This time, however, an intervention interrupted the cycle.
Ending the hospitalization cycle
Mathis joined Atrium’s Eagle program, an outpatient first-episode psychosis program which started in May 2017. Eagle is the newest of four such programs in North Carolina which treat young people who have experienced psychotic breaks that sever them from reality.
Help with transitioning back to their lives
According to the National Institute of Mental Health, 3 percent of people will experience psychosis at some point in their lives. Psychosis, which manifests as hallucinations or delusions, usually hits people for the first time in their late teens and early twenties, as it did with Mathis.
Antipsychotic medications help stop future episodes, but first-episode programs offer more wraparound services to deal with the disorder.
“Every time someone experiences a psychotic episode, some of their cognitive functioning is essentially lost,” said Ashlynn Reed, coordinator of the Eagle program. To make up for that loss, participants play specially designed computer games. “Through the psychological testing [we] identify the cognitive deficits, and then the games are really directed and geared toward improving whatever area of cognition: that could be memory, processing speed, [or] focus and concentration.”
Aside from medication management, individual therapy and the cognitive computer games, Eagle also offers family therapy, peer support and help with transitioning back to school or work as part of a framework called coordinated specialty care.
“It’s not that there’s anything wrong with the families, it’s just that this is a huge, huge change,” said Dr. Diana Perkins, medical director of UNC Chapel Hill’s OASIS, which opened in 2005 as one of the first such programs in the country. “[For] a typical patient, [it happens] during their senior year of high school: they’ve been a good student up until then, their grades all of a sudden start to fall and they’re withdrawing from others, and then the psychosis becomes clear.
“Until then this kid was really just fine and on a trajectory, then all of a sudden their brain isn’t working right,” Perkins said. “It’s really hard for families to cope with this.”
Breaking with convention
The idea of opening a coordinated specialty care clinic to treat schizophrenia started with a 1992 Australian program, Perkins said.
“When I first became a psychiatrist, the treatment model for schizophrenia was nihilistic. The idea was that schizophrenia was inevitably destabilizing,” Perkins said. “The way treatment is conventionally delivered over time, there was an accumulation of deficits and disability emerged.”
First-episode psychosis researchers thought they could design a better treatment plan and prevent long-term disability.
“The treatment model that [the Australian doctor who started the first program] envisioned was ‘Let’s take a multi-disciplinary approach team working together with bringing in various expertise, and see if we can improve outcomes.’”
OASIS thrived with initial funding from the Duke Endowment and the Kate B. Reynolds Charitable Trust (KB Reynolds also supports NC Health News). After similar programs opened, the National Institutes of Health ran a study which confirmed the effectiveness of coordinated specialty care. Since then, programs have opened in every state under the 2014 SAMHSA block grant, which set aside 5 percent of funds for evidence-based programs to deal with serious mental illnesses.
Perkins used the grant to start Early Psychosis Interventions North Carolina Advisors, an umbrella training and accountability program. Next, Wilmington’s SHORE program and the Wake County Encompass program opened with help from EPI-NC. After new terms of the grant doubled the percentage dedicated to first-episode psychosis in 2016, Eagle started, with Cardinal Innovations as a partner to Atrium, managing the SAMHSA grant.
“We had a population of people who are experiencing these symptoms, and a lack of resources to provide them treatment,” said Reed, relating why Atrium decided to start Eagle. “Most of the time, you would find [emergency department] visits, you would find inpatient hospitalization, maybe some follow up to therapy, some follow up to medication management, the outpatient setting, and then a lapse of care.”
Saving dollars through prevention
EPI-NC measures the success of its programs by whether discharged patients can continue to work or go to school and live their normal lives. Eagle claims an 83 percent success rate with their patients.
According to an annual EPI-NC report, the four programs served 432 patients from July 2017 to June 2018. The 51 Charlotte patients seen from when the program opened in October 2017 to September 2018 followed many of the same demographics as the rest of the programs, with an average age of 20 versus a statewide average of 21.
Who are first-episode psychosis patients in NC?
This graph shows the different proportions of patients by race. Charlotte patients were more diverse than North Carolina patients overall. Data from EPI-NC. NOTE: Charlotte data is from October 2017-September 2018 while NC data is from July 2017-June 2018. Graph credit: Yen Duong.
A slightly higher percentage of patients in Charlotte were male compared to North Carolina as a whole. Graph credit: Yen Duong
Often schizophrenia and treatment for it lead to co-occurring health problems, such as diabetes and heart disease, Perkins said.
“If you look at chronic schizophrenia clinics, 90 percent of people are disabled. Our program, maybe 20, 25 percent at most,” Perkins said. “Instead of people on disability, you have people who are working and can contribute.
“These programs end up preventing disability and decreasing the likelihood of these comorbid and really expensive disorders, so it’s going to save a lot of money.”
‘I really don’t know where I would have been’
Because of the terms of the grant and state funding, Eagle patients must live in Mecklenburg County. Similar restrictions hold for SHORE in Wilmington and Encompass in Wake County.
The block grant covers the peer support specialists and work and school support services for all programs. State funding through Cardinal pays for therapy and medication management for uninsured patients for the Eagle program. The four programs also take Medicare and Medicaid patients.
Insuring EPI-NC patients
For people who can’t access one of the four programs, EPI-NC is working on using telehealth to bring some of the services to more rural areas in North Carolina, Perkins said.
“These are more model programs, we’re trying to figure out how best to implement them but they’re not universally available,” Perkins said. “That gets to the big issue of health care disparities and what we need.”
For Mathis, Eagle helped him break the cycle of going in and out of mental hospitals. He returned to his family in Florida and holds a part-time job with plans to return to college in May.
“It’s like a community that supports you instead of just a therapist that just talks to you about your problems,” Mathis said. “Without them, I really don’t know where I would have been, because they really helped me make progress in my life.”