BETHESDA, MD. – What would the world look like for people with first-episode psychosis if they could be identified before they ended up in care? And what if once identified, they could begin receiving treatment immediately?
Those questions are not just hypothetical to Danielle Schlosser, PhD
Using online screening based on proven tools, followed by enrollment in a secured, closed community created through the use of a smartphone app, Dr. Schlosser and her colleagues are delivering remote care to people with first-episode psychosis, rather than making them come to the clinic.
“It’s controversial, but you’re not doing anything meaningful if you don’t stir things up,” Dr. Schlosser said in an interview. “Why do we have to have a one-size-fits-all model?”
Statistics from NIMH show that duration of psychosis before treatment is 1-3 years. People in the early stages of psychosis, typically in their late teens or early 20s, often do not find their way to care until after admittance through an emergency department or a brush with the law, Dr. Schlosser said. Once diagnosed, clinically meaningful improvements in outcomes in this cohort often are impeded by cognitive and motivational impairment, including fear of stigma, or logistical challenges such as finding reliable transportation to a treatment site. According to the World Health Organization, half of all people with schizophrenia globally are not receiving treatment.
“We can do better,” Dr. Schlosser said.
In the PRIME design trials, Dr. Schlosser and her colleagues are evaluating how “user-centered design” might improve treatment delivery. In stage 1 of the study, two design phases, each with a separate group of 10 participants with recent-onset schizophrenia, helped a global design firm called IDEO arrive at a product that Dr. Schlosser and her colleagues described in a study published online as “casual, friendly, and nonstigmatizing, which is in line with the recovery model of psychosis” (JMIR Res Protoc. 2016;5:e77).
The app included short motivational texts from trained therapists, a feature for individualized goal setting in prognostically important psychosocial domains, opportunities for social networking via direct peer-to-peer messaging, and a community “moments feed” aimed at capturing and reinforcing rewarding experiences and achieving goals.
After 12 weeks of using the app, Dr. Schlosser and her coinvestigators found that trial participants, all of whom had been asked to use it at least once a week, had used it an average of once every other day and had actively engaged with its various features with every log-in. Retention and satisfaction was 100% in each group, and levels of engagement from stage 1 to stage 2 increased by what Dr. Schlosser and her coauthors reported as “two- or threefold” in almost each aspect of the platform.
Dr. Schlosser said such impressive results have continued now that the study has entered stage 2, which is being conducted across the United States, Canada, and Mexico. Fifty people have enrolled, Dr. Schlosser said.
“So far, we have a 93% retention in our clinical trial, which is very high for this population,” she said. “We’re also seeing that two-thirds of the population are self-referred. You just don’t see that in early psychosis research.”
She credits those results in part to the study’s online recruitment design, but Dr. Schlosser said the patient-reported outcomes are the most gratifying.
“We got a letter from a mom who said she wished we could have seen her daughter’s face when she saw that everyone in her [online] group looks ‘normal.’ Her daughter was looking for hope, and she found it mirrored back at her,” Dr. Schlosser said. “They are not their illness.”
A prime reason people with recent-onset schizophrenia don’t access formal treatment is the fear they will be stigmatized, Dr. Schlosser said. Furthermore, she said, since most of those affected are young, creative, and “antiestablishment” in their attitudes, they already deal with stigma. The most effective treatment experience needed to be based on those kinds of values, she said.
“They want more control in their lives, and they want to connect with others like them. The idea of seeking care in a traditional setting is a deterrent for these people,” Dr. Schlosser said in the interview. “So, rather than build a new building, we built them a digital platform.”
A few audience members expressed concern that such a treatment model may expose these patients to unnecessary harm. Dr. Schlosser replied in the interview that even in clinical settings, patients prescribed medications still may be noncompliant. “We are not the enforcers of medications. It’s still the patient’s choice. Maybe I am being too provocative, but if people don’t want to take medications, then we try to work with them where they are,” she said.