Early Detection, Intervention and Prevention of Psychosis Program: Community Outreach and Early Identification at Six U.S. Sites

Psychotic disorders can cause severe functional impairment and can place a significant burden on caretakers and society (1). However, the time between the first emergence of psychotic symptoms and treatment averages one to two years (2). Studies of patients hospitalized for first-episode psychosis found that the delay in initiating help was a significant contributor to longer duration of untreated psychosis (3,4). In a study examining contacts that led to hospitalization for first-episode psychosis, only 5% of contacts were from primary care providers, whereas 20% were from police (5). A meta-analysis of pathways to care in first-episode psychosis indicated that North American studies found that emergency services were the most common pathway to care but that such a pathway can lead to poor engagement (6). Those who were in treatment prior to psychosis and reported nonspecific symptoms, such as memory problems, feelings of confusion, and odd or distracting thoughts, had a longer delay in initiation of adequate treatment, suggesting that professionals in the field need training in identifying early signs of psychosis (7). Without treatment, individuals with a first psychosis are at high risk of suicide and can experience reduced functioning, worsening symptoms, increased isolation, and diminished response to treatment the longer the episode (8–13).

Treatment prior to psychosis may improve functional outcomes (1,14–18). Although this clinical high-risk stage may be an optimal time to intervene, the earliest symptoms of psychosis are inherently subtle, subjective, and often overlooked by providers (7). These early signs and symptoms are more likely to be recognized by people who have long-term relationships and frequent contact with youths, such as teachers, primary care physicians, pediatricians, and community-based mental health providers. Educating these professionals and community members may promote rapid access to treatment for youths whose symptoms may otherwise go undetected (11,19).

EDIPPP Background

The Early Detection, Intervention and Prevention of Psychosis Program (EDIPPP) was a national multisite research treatment study that tested a preventive intervention (20) for young people at clinical high risk of psychosis or those at a very early point in their first episode (onset within 30 days). One key aspect of the study protocol was a community education and referral model developed by the Portland Identification and Early Referral (PIER) program. In a prior study, PIER was able through community outreach to promote early referrals for individuals at risk (21). PIER educated more than 7,000 professionals and found a 34% reduction in incidence of hospitalizations for first-episode psychosis (22). The EDIPPP study included this outreach model at six replication sites: PIER, Portland, Maine; Early Assessment and Support Team (EAST), Salem, Oregon; Michigan Prevents Prodromal Progression (M3P),Ypsilanti; Recognition and Prevention (RAP), Queens, New York; Early Detection and Preventive Treatment (EDAPT), Sacramento, California; and Early Assessment and Resource Linkage for Youth (EARLY), Albuquerque, New Mexico. This article describes the implementation of EDIPPP’s community education and referral model at these six sites, each with unique organizational affiliations and geographic, sociocultural, and environmental characteristics. The lessons learned and the distinct successes and challenges may help advance other preventive programs.

Methods

The study was approved by the Maine Medical Center Institutional Review Board and the respective institutional review boards at each study site. After the study was described to participants, written informed consent was obtained prior to their participation in assessment or treatment associated with the study.

EDIPPP Outreach Overview

EDIPPP’s outreach and education model was designed to generate rapid referrals for preventive treatment of youths at clinical high risk of psychosis by creating a network of professionals and community members trained to identify signs of early psychosis. This systematic approach to outreach included community mapping, establishment of a steering council of key community members, development and delivery of outreach messages to target audiences, and evaluation of the process (23). All six EDIPPP sites followed this stepwise approach regardless of previous outreach experience and received monthly group supervision from the EDIPPP National Program Office (NPO). Outreach audiences included educational, medical, and mental health professionals; community groups; media; youth and parent groups; and multicultural communities.

Each site began by utilizing a community mapping tool to identify key audiences for outreach. [The tool is included in an online supplement to this article.] Selection of the site’s catchment area was based on many factors, including having a population of 300,000–600,000 people representing the socioeconomic and ethnic diversity of the region; school districts contiguous to one another; and geographic areas covered by these clusters located within 20 minutes of the treatment or research facility. Each site then created a steering council of community stakeholders, representing local universities, hospitals, school districts, medical communities, and other key sectors.

Sites developed and followed an outreach plan that was spearheaded by a team coordinator who developed materials, identified targets, scheduled presentations, and tracked progress. All sites utilized the same Web site format, printable educational materials, and a video about the components of the treatment model.

A multidisciplinary team at each site was trained to deliver a standard presentation about early warning signs of psychosis. The presentation included indicators of psychosis risk, including suspiciousness and paranoid thoughts, altered perceptions, social withdrawal, and cognitive changes, among others. Some flexibility was encouraged to address each site’s geographic and cultural diversity and unique challenges. Outreach included formal presentations (educational slides and handouts about early warning signs, deidentified case examples, and referral information) and informal activities (health fairs, conferences, and phone contacts).

Research Design

An evaluation, largely conducted by evaluators at the University of Southern Maine’s Muskie School of Public Service, generated quantitative data, evaluated training, and generated site-specific reports and annual evaluation reports at the end of two years for five of six EDIPPP sites (24,25). New Mexico’s EARLY site was excluded from the quantitative evaluation because the program joined the study late, but the site participated in qualitative elements. Quantitative data included enumeration of community education activities by site, referrals, and referral sources. Qualitative data were gathered from interviews at the end of the study by staff examining each site’s affiliations and past outreach and community education experience and the successes and challenges encountered in each site’s study outreach efforts. [Inclusion and exclusion criteria for the study are reported in the online supplement.]

Results

Site Demographic Characteristics and Prior Community Education Experience

By design, there was significant variation across sites in geography, demographic characteristics of the population served, agency affiliation, and prior outreach. Defined catchment areas ranged from 4,839 square miles in Oregon to 82 square miles in New York, encompassing a total population of 2,985,384 across all sites, about 1% of the U.S. population according to 2010 census data (see online supplement). Four sites had prior experience with community education, mostly regarding optimal treatment of first-episode psychosis.

PIER, based at Maine Medical Center, Portland, began providing outreach to the community in 2000 and continued outreach during EDIPPP, focusing on youths at high risk of psychosis. Its catchment area had a relatively homogeneous population of 323,105, with recent immigrants adding some cultural diversity. PIER’s connections in the community, established through ongoing and organized outreach to schools, medical practices, and community agencies, were an asset when EDIPPP was implemented in the Portland area.

EAST was a division of Mid-Valley Behavioral Care Network in Oregon, a five-county intergovernmental managed mental health organization in northwestern Oregon; the catchment area population was 631,853. For seven years prior to EDIPPP, EAST conducted extensive community outreach within this system for a first-episode program. With EDIPPP, EAST expanded its outreach to schools and medical practices, updating referrers on clinical high-risk criteria.

M3P, operated by Washtenaw Community Health Organization in Michigan, provides integrated health care for people with mental illness, developmental disabilities, and substance use disorders. With a population of 344,791, Washtenaw County covers nearly 800 square miles. When EDIPPP was implemented, M3P was newer to community outreach but found that its outreach and community education was welcomed in schools and medical facilities. At the time of EDIPPP implementation, M3P had no prior experience with high-risk youths.

Since 1998, RAP has been an early intervention and prevention research program at Zucker Hillside Hospital. RAP’s catchment area included areas in Nassau and Queens Counties, with an ethnically diverse population of 557,725. When EDIPPP was implemented, its hospital system had provided most of the referrals needed to sustain its research program; systematic and targeted outreach was initiated in 2007.

EDAPT, a division of the University of California, Davis (UCD), had the city of Sacramento as its catchment area, with a highly diverse population of 466,488, and 27% with Latino ethnicity. When EDIPPP was implemented, EDAPT’s prior community outreach for research purposes was helpful, but it included only inpatient and outpatient mental health facilities. With the start of EDIPPP, UCD conducted more systematic outreach to schools, primary care physicians, and community agencies. Previous affiliation with the city’s school district contributed to outreach to schools.

EARLY is located in Albuquerque’s largest metropolitan area. The catchment area’s population of 661,422 is ethnically diverse, with 48% identifying as Latino. EARLY is based at the Department of Psychiatry’s Center for Rural and Community Behavioral Health at the University of New Mexico. When EDIPPP was implemented, its previous community partnerships enabled it to rapidly launch outreach efforts.

Community Education Activities and Referrals

Despite their differences, all programs generated a stream of appropriate referrals. During the EDIPPP study (May 2007–May 2010), there were 848 formal presentations to 22,840 attendees and 145 informal presentations to 11,528 attendees. These presentations led to 1,652 referrals (Figure 1). A total of 1,132 of these referrals were screened out over the telephone and referred to other providers. The remaining 520 individuals were offered in-person orientation, in which the family received program information and an opportunity to consent to participate. A total of 392 (75%) of those recommended for orientation gave their consent to participate in the program and were assessed. A total of 337 (86% of those assessed) were assigned to the study; 205 individuals at high risk of psychosis and 45 individuals who were early in their first episode, on the basis of symptom scores on the Structured Interview for Prodromal Syndromes (26), were assigned to family-aided assertive community treatment (20). A total of 87 individuals who were at lower risk were followed through monthly phone interviews in order to track outcomes and treatment received in the community.

Referral Sources

A previous outreach evaluation revealed that mental health professionals and parents were important sources of referrals. Overall, most referrals were made by mental health professionals (38%) and parents (37%); the parents usually heard about the program secondhand, typically from school staff, mental health professionals, or primary care physicians (24). School-based referrals and referrals from medical professionals provided an additional 16% of referrals. EDIPPP referrals increased as outreach increased. As noted in a previous report, outreach audience size in one month significantly predicted referral counts in the following month (25). In the later stage, the volume of referrals was maintained, although outreach decreased (Figure 2).

Demographic Characteristics of Enrolled Participants

At all sites, the population served had racial and ethnic characteristics similar to those of the 2010 U.S. population data (27,28) (Table 1). Table 1 also presents data on the EDIPPP enrollees. The distribution of racial-ethnic groups was similar across the six sites, suggesting that the sites enrolled a diverse and representative study sample. As shown, 14% of enrollees were Latino, compared with 16% in the U.S. population, and 62% of enrollees were Caucasian, compared with 72% in the U.S. population. In Sacramento, 18% of enrollees self-identified as being of two or more races, compared with 7% in the catchment area; similar percentages were observed in New York. In Sacramento, 6% of enrollees identified as Asian, compared with 18% in the catchment area. In Michigan, 26% of enrollees reported being African American, compared with 13% in the catchment area and in the U.S. census. Of the 337 enrolled participants, 40% (N=134) were female. In the clinical high-risk group, the mean±SD age was 16.4±3.3, and it was 17.9±3.1 in the early first-episode group (29).

Outreach Successes and Challenges

Each site offered qualitative feedback about its unique experience with the outreach protocol. EAST’s steering council was able to access a wide network of professionals and opportunities for partnering at events where other programs in the area were offering community education. PIER’s steering council was crucial in helping to map community audience groups and in connecting with “gatekeepers” for intended audiences, especially among recent immigrants. EDAPT’s steering council provided invaluable guidance on how best to approach some of the cultural communities, such as the Hmong. The EARLY program did not ask its steering council to play a more active role in setting up outreach presentations, although program outreach was successful through some of the university’s community affiliations.

In New York, the population density is so high that only a few specific and noncontiguous zip codes were included in the catchment area of RAP. As a result of this design, compared with other locations, the New York site had a high volume of telephone referrals from out of its catchment area (24). The EARLY program in New Mexico found that although presenting to districtwide groups was efficient, it was also problematic because the zip codes of some attendees were not in the eligible catchment area. Because of the size of its treatment team, EARLY’s enrollment was staggered by area zip codes to eventually include the entire county. Sites that included the entire county (New Mexico, Michigan, and Oregon) had fewer concerns about the catchment restrictions.

EDAPT’s initial contact with administrators in the Sacramento City Unified School District led to districtwide outreach activities, which had the greatest impact on EDAPT’s referral base. As a result of M3P’s outreach in schools, some of the schools and colleges developed their own mental health awareness campaigns. PIER’s greatest area of success was in developing a system of regular training sessions in all Portland-area high schools and colleges. PIER’s outreach broadened within the school system after a tenth-grade health class curriculum and a college resident advisor training were developed. EARLY’s initial outreach priority was schools. Within the first few months, the program had presented to all of the nurses, social workers, school counselors, and psychologists in the Albuquerque public schools. Because EARLY is a division of the University of New Mexico, it met with student counseling personnel, campus police, and residence hall directors. RAP faced unique challenges in school outreach because the New York City Board of Education has restrictive rules about the involvement of outside agencies and research projects. Thus conducting outreach events at area schools was difficult, but RAP made use of professional networks through mailings and calls that led to successful school outreach events. However, RAP’s inability to do wider school outreach was reflected in a lower rate of school referrals.

M3P, like EAST, was embedded in the community mental health system, providing a natural referral source. EARLY had fewer referrals from mental health professionals, because the program focused more of its energy on schools.

Private-practice professionals were more difficult to reach without a specific group to which presentations could be made. One successful approach was to offer large-scale training sessions and to provide continuing education credits. Overall, mental health professionals generated the highest number of referrals across sites and were more likely to make appropriate referrals (24).

Although gaining access to primary care providers was a critical part of the strategy, it was a challenge for all sites because of skepticism about the prevalence of psychotic illnesses and limited time available to focus on mental health issues. Hospital affiliations (RAP and PIER) did not facilitate access to primary care providers. PIER found that the most successful approaches included a “lunch and learn” to accommodate physicians’ schedules, grand rounds presentations, and outreach to participants’ medical providers. EDAPT clinicians were able to reach family medicine providers and some primary care providers through existing clinical affiliations.

One of the challenges for the sites with large Latino populations was the research restriction that the client and one parent be proficient English speakers. Nevertheless, enrollment of Latino families at most sites was representative of the catchment area: California had 31%, compared with 27% in the catchment area; New Mexico had 45%, compared with 48%; New York had 22%, compared with 20%; and Oregon had 10%, compared with 18% (Table 1).

Prior to EDIPPP, UCD Medical Center had made efforts to reach underserved cultural communities in Sacramento and had a number of programs that greatly facilitated outreach to immigrant communities. However, the name recognition of UCD may have hindered outreach to some community providers who were not part of the UCD Health System because of an “ivory tower” perception.

New Mexico has a large Latino and Native American population. Some cultures have a different interpretation of the cluster of symptoms that Western medicine considers “psychosis.” For example, during a presentation to behavioral health staff at a Native American charter school, the presenters were interrupted as they listed the signs of psychosis by a staff member who said, “You just described a medicine person in my culture.” The nature of psychosis and how it might be interpreted required cultural sensitivity and a focus on functioning. We presented warning signs in terms of their impact on work and school, such as “difficulty speaking or understanding others” or “trouble with reading comprehension and writing.” The Michigan staff found that at health fairs with diverse audiences, they were asked to talk more broadly about overall mental health and wellness.

Consistency of outreach effort resulted in more referrals. Providers needed periodic contact from the EDIPPP team to both train new staff and refine skills in identification of early symptoms. Maintaining consistent community education was a challenge at all sites, but setting monthly target goals helped. For instance, EARLY stayed in touch with referrers through a quarterly newsletter, periodic e-mails containing program updates, and media coverage.

Discussion

EDIPPP was able to replicate the PIER program’s earlier results from communitywide outreach to educate key professionals in identifying and referring at-risk youths for treatment. The operating assumption was that engaging stakeholders most likely to notice distress, changes in functioning, and subtle psychotic symptoms is necessary to achieve identification early enough for interventions to be preventive (21). School, mental health, and medical practitioners were the critical audiences for community outreach.

Six geographically and ethnically diverse sites developed a site-specific plan for outreach, guided and assisted by the EDIPPP NPO and members of their own steering council. Regional differences provided unique challenges requiring an outreach program with the flexibility to address these needs. Conventional public health strategies and methods may be effective in identifying and referring a substantial number of young people in the earliest stages of onset of psychosis. Achieving an impact on public health may require the same intensity and duration of educational effort that has been successful in cancer and cardiovascular disease. More widespread progress may also require efforts to reduce the continuing stigma associated with mental illness.

Although EDIPPP data suggest a link between outreach activities and program referrals, the findings should be interpreted with caution because of the inability to compare different outreach methods. For instance, public information campaigns, such as those that have been conducted for HIV prevention and certain cancers, may have greater impact across large populations at lower cost. More focused education directly targeting youths in high school, college, and the military could have a more systematic effect than the methods used in EDIPPP, which relied more heavily on identification by adults than by youths themselves.

Conclusions

Results provide support for the feasibility and generalizability of this outreach model for generating referrals prior to psychosis onset, holding promise for communities wishing to provide preventive services to youths.