25 May 2017
by Hakon Heimer
On Tuesday, March 28, the final day of the International Congress on Schizophrenia Research in San Diego, a morning symposium addressed one of the key goals of improved care for people in the early stages of mental illness: reducing the duration of untreated psychosis (DUP). Many studies have found that longer DUP is correlated with poorer outcomes in schizophrenia. Susan Azrin of the U.S. National Institute of Mental Health chaired a session to present preliminary findings from four studies of different strategies for reducing DUP.
Lisa Dixon of Columbia University kicked off the session with a description of RAISE Connection, the smaller of the two Recovery After an Initial Schizophrenia Episode studies. With a small sample of 20 patients and 10 family members, the researchers focused on a qualitative assessment of each help-seeking event. They identified four factors for which positive or negative experiences might influence whether people in early psychosis were likely to reach appropriate care providers:
- Interpersonal connections
- Quality of care
- Family involvement
- Care transitions
The prediction, which was not testable in such a small sample, is that positive experiences within more of these domains would produce better outcomes. Even without the quantitative data, Dixon said that multifaceted strategies were clearly needed to reduce DUP. The RAISE researchers are now testing a “toolkit” to address these factors with OnTrackNY, a statewide effort to create early psychosis specialty clinics. To date, they have found that only about 20 percent of those referred to specialty clinics are eligible for the care, but most of those who are eligible have enrolled.
Most of the clients come from psychiatric inpatient or outpatient care, and these are in large part eligible for the program, whereas people who come to specialty clinics on their own or are referred by family are generally not eligible. The site of first diagnosis was overwhelmingly in mental health settings, not in primary care. Dixon felt this offered a potentially fruitful place to reduce the DUP.
In his talk, “Internet and social media pathways to care,” John Kane of The Zucker Hillside Hospital in Glen Oaks, New York, described his group’s explorations of how young people and families use these resources during the emergence of psychosis. Based on an extensive series of interviews, the group found that about half of their interviewed population used the Internet to gather relevant information during the emergence of symptoms, and 70 percent noticed a change in their social media habits. About a quarter talked about their symptoms online, and 50 percent of those who responded would be okay with proactive outreach.
In a separate initiative, they conducted anonymous e-surveys with more than 20,000 college students for early signs of illness using a self-administered scale. Though they did not have a great response to their survey, they recognized that college students are bombarded with surveys and respond to very few unless there is a cash incentive. Among those who took the survey and scored positively, none reached out for a referral to a mental health professional.
In a third initiative, recognizing that people 15 to 16 years old are the real social media experts, the investigators began working with high school students through a summer program and developed a new project called Friends of Mind.
Kane also discussed the potential to use Google ads, Facebook posts, and Twitter statements to facilitate earlier identification of psychiatric symptoms. However, he emphasized that successfully identifying people who could enter psychosis treatment programs with these social media tools is not sufficient.
“One of the most critical questions is, Once you do identify someone, how do you succeed in getting them to take the next step and engage in an evaluation and potential treatment?” said Kane.
He noted that Mental Health America has great online tests that many people have used, but an overwhelming number of people whose tests indicate that they might have a mental health issue don’t want referrals―they only want examples of self-help.
Scott Woods of Yale University followed, as a substitute for his colleague Vinod Srihari, who was unable to attend the meeting. Woods described the Mindmap program at Yale’s Specialized Treatment in Early Psychosis (STEP) clinic. The first part of MindMap is modeled on a successful experiment in Norway, where DUP was reduced through media outreach (Melle et al., 2004). If they replicate the reduction in DUP, the Yale group will then ask whether this affects outcomes.
The STEP clinic’s “active strategy” involves both “demand side” and “supply side” strategies. On the demand side, media campaigns target people with symptoms of psychosis as well as their friends and families. There is also professional outreach and “detailing” to clinicians and community leaders such as religious leaders and politicians. The supply side of the equation was ensuring rapid access to the STEP clinic, which has reduced the wait time to about a week at this point but wants to be even faster.
Woods said that they are now in Year 3 of the four-year study, and so do not have data to report yet. However, it does seem that social media generates clicks, yet those clicks don’t seem to drive large numbers into STEP.
The final speaker, Steven Lopez of the University of Southern California discussed his group’s findings on psychosis literacy and help-seeking attitudes among U.S. Latinos with first-episode psychosis, their family members, and community residents (see SRF meeting report on this study).
Referencing the Norwegian media outreach program, which increased mental health literacy, Lopez said that his goal was to increase psychosis literacy. “It’s not just a cognitive process―it’s a social process, embedded in relationships,” he said.
Latinos, especially those from Mexico, are even less likely than other minority groups to use mental health services.
Lopez and his colleagues found that caregivers have greater knowledge, especially about hallucinations, than their general community, but less than half recognize delusions, and very few understand the significance of disorganized speech. Most of the patients in their study associate psychosis with social interactions, though caregivers are more likely to also endorse mental illness or psychosis. The patients have lower psychosis literacy than even the general community.
In her remarks, discussant Rachel Loewy of the University of California, San Francisco, noted that Dixon’s work pointed to the stigma among health professionals, and even among mental health providers, about referring patients to specialty clinics. Kane’s work, she said, points out that there are a lot of data out there to mine, but no clear idea has come forward for how we can use it. Regarding the work by Lopez and colleagues, Loewy said it highlighted the need to bridge what we do and say on the one hand, and what people use in everyday life on the other. It’s not enough for us to pose our medical model, she said. We have to understand what is explanatory to them.