Schizophrenia is a devastating and chronic mental illness that affects approximately 1% of the US population or 3.2 million adults.1 People who develop schizophrenia—a disorder that impairs cognition, conation, affectivity, and interpersonal functioning—frequently drop out of school, are unemployed, and become increasingly isolated from friends and family.2 Incarceration and homelessness are common.3 Americans diagnosed with psychotic disorders such as schizophrenia die, on average, 11 years earlier than the general population, often from co-occurring medical conditions such as diabetes, cardiovascular disease, or respiratory illness4; 5% commit suicide, often in the early years of illness.5
Approximately 100,000 adolescents and young adults in the US experience first-episode psychosis (FEP) annually,6 a traumatic event that often foreshadows a schizophrenia spectrum diagnosis. Treatment responsiveness depends on rapid initiation of care, but substantial delays between the onset of psychosis and effective antipsychotic intervention are common.7,8 In the US, a recent study of the duration of untreated psychosis (DUP) reported a median DUP of 74 weeks across 34 diverse community mental health centers,9 a level more than 6 times the World Health Organization standard for effective early psychosis intervention.10
Current knowledge suggests that the best chance for improving outcomes in schizophrenia and related disorders is to intervene close to the onset of psychosis, when clinical symptoms and functional impairments are most responsive to intensive intervention. Clinical research conducted worldwide supports several approaches for ameliorating symptoms and promoting functional recovery in FEP, including early detection and speedy referral to care,11 low doses of atypical antipsychotic medications,12 cognitive and behavioral psychotherapy,13–15 family psychoeducation and support,16,17 and educational and vocational rehabilitation.18 These approaches often come together in specialized early intervention programs that emphasize prompt detection of psychosis, team-based care, and recovery-oriented services for 1 to 2 years.19 Narrative reviews of randomized and nonrandomized studies20 and meta-analyses of randomized controlled trials19,21,22 suggest that integrated specialty care for FEP is more effective in reducing psychopathology, lowering hospital use, and improving overall functioning compared to usual treatment.
Recovery After an Initial Schizophrenia Episode Initiative
Early psychosis services have been implemented in several countries, including Australia, Canada, Denmark, and the United Kingdom.23 In the US, coordinated specialty care (CSC) programs for FEP are typically found in academic research centers24,25 with very few early intervention programs in community settings. In 2008, the National Institute of Mental Health (NIMH) launched the Recovery After an Initial Schizophrenia Episode (RAISE) initiative with the aim of developing, testing, and deploying team-based, multicomponent interventions for FEP in “real world” community clinics. By engaging key stakeholders at federal, state, and local levels, RAISE aspired to rapid dissemination, adoption, and implementation of evidence-based CSC approaches. In 2009, the NIMH funded two research projects as part of the RAISE initiative—the Early Treatment Program (RAISE-ETP) and the Implementation and Evaluation Study (RAISE-IES).
RAISE-Early Treatment Program
RAISE-ETP was the first multisite randomized, controlled trial to compare the effectiveness of CSC for FEP to usual care delivered in US community clinics.26 A total of 404 young people (mean age 23) with FEP were enrolled. Over 100 clinicians from 17 geographically diverse settings were trained to deliver “NAVIGATE,” a team-based approach to CSC that included four core interventions: resilience-focused individual therapy, family psychoeducation and support, supported education and employment, and personalized medication management.27 Compared to patients who received usual care, NAVIGATE participants were more likely to acknowledge receipt of key CSC services, remain in treatment longer, and experience significantly greater improvement in symptoms, involvement in work or school, and overall quality of life.28 Importantly, patients with shorter DUP (<74 weeks) derived significantly greater benefit from NAVIGATE than those with longer DUP or participants who received usual care, supporting the notion of a critical period for effective early intervention in FEP.29
RAISE-Implementation and Evaluation Study
RAISE-IES was an implementation research study that explored methods for promoting the uptake of evidence-based CSC programs in publicly funded mental health clinics. In partnership with state mental health authorities in New York and Maryland, IES researchers established the feasibility of CSC teams in routine practice settings and the success of such teams in engaging and retaining young clients.30 Young people (mean age of 22 years) who participated in the Connection Program, the CSC approach implemented in RAISE-IES, achieved a range of positive outcomes including reduction of clinical symptoms, improved social and occupational functioning, and increased rates of school and work participation.31 The Connection Program was subsequently selected for broad implementation in both states. RAISE-IES developed several products to facilitate adoption of CSC programs in public health settings, including a tool for estimating costs and resources for CSC programs,32 practical methods for monitoring teams' fidelity to CSC principles,33 and approaches to training and supervising existing staff.
Results from the ETP and IES studies support the feasibility of implementing early psychosis services in the US. Between the two NIMH projects, CSC teams were established in community mental health clinics across 19 states, with better outcomes for service users who received specialty care. In light of growing support for early detection and intervention programs,34 the ensuing sections describe key features of CSC, opportunities for broad implementation in the US, and future research and practice directions.
Coordinated Specialty Care
At its core, CSC is a collaborative, recovery-oriented approach to treatment that emphasizes shared decision-making for addressing the unique needs, preferences, and goals of persons with FEP.35 The organization of CSC programs can vary depending on local circumstances, but common features include multidisciplinary treatment teams, a small client-to-staff ratio, and a menu of evidence-based services that support adaptive functioning in the community.19,36
CSC is typically delivered by teams of 4 to 6 clinicians who are trained in the principles of phase-specific care for FEP as well as specific interventions. Critical roles fulfilled by team members are listed in Table 1. Psychiatrists and nurse practitioners are primarily responsible for pharmacotherapy and coordination with primary health care; psychologists, social workers, and rehabilitation counselors provide individual and family therapy, case management, and supportive employment and education services. Team members maintain a shared caseload of 30 to 35 clients, although larger patient-to-clinician ratios may be possible in clinics affiliated with academic research programs.37
Coordinated Specialty Care Team Member Roles and Associated Services
Weekly team meetings and daily communication among team members bolster fidelity to the CSC model, maintain focus on each client's recovery goals and needs, and build interdisciplinary team morale that sustains high-quality service provision. People with lived experience of psychosis may be included as team members, particularly peers who can help ensure the “youth friendliness” of the program.38 Evidence suggests that people with lived experience can effectively deliver CSC interventions such as supported employment/education services, and add unique value to recovery-oriented programs.39
Several staffing models were successfully implemented in the RAISE studies. Case examples illustrate how CSC team structure could vary depending on characteristics of parent health organizations, the size of the FEP cohort, the number of qualified providers, and the level of effort each provider devoted to the CSC program.36
Community Outreach and Engagement
Early intervention programs aim to reduce DUP by improving early identification of people with FEP in the community and facilitating rapid access to CSC services.10 The CSC outreach specialist, often the team leader, develops referral pathways with inpatient facilities, emergency departments, crisis intervention services, child and youth mental health programs, and the criminal justice system, cultivating relationships with admission and discharge personnel at these agencies to facilitate referral and easy entrée to CSC. Along with assertive outreach, the team leader assures efficient enrollment and provides hopeful messages to clients and relatives at the time of intake. Descriptive materials are free of stigmatizing and clinical language, and emphasize the program's focus on helping patients to address and accomplish their personal recovery goals. Many youth particularly value supported employment/education opportunities, which often motivate initial engagement in CSC services.
Engagement is also facilitated by establishing a “youth friendly” atmosphere in the clinic and instilling such a mindset among providers. At a minimum, this requires locating the CSC program in a space separate from adult treatment programs, and offering appointments on evenings and/or weekends to meet the needs of youth and family members with school or work commitments and to allow for more rapid evaluation.38
Delivery of Evidence-Based Services
Evidence-based components of CSC include low-dose, slow-increment antipsychotic pharmacotherapy, cognitive-behavioral therapy, family psychoeducation, and supported employment.19,40 Along with specific interventions, CSC programs provide general supports, including:
A single provider who serves as the client's principal care manager. This person is responsible for coordinating all aspects of the client's care, and serves as the client's link to the rest of the treatment team as well as social service agencies and emergency treatment facilities.
Close coordination of psychiatric and primary medical care, with a focus on optimizing the client's overall mental and physical health.
Availability of at least one team member to assist with crisis situations during or outside regular hours. In the event of emergency department visits or inpatient admission, the care manager coordinates discharge planning to facilitate rapid return to CSC care.
CSC programs typically offer services for up to 24 months, but recent data argue in favor of continuity of care for up to 5 years after psychosis onset.41
Bringing Early Psychosis Services to Scale
In 2014, the US Congress added $24.8 million to the Community Mental Health Services Block Grant (CMHSBG) and instructed the Substance Abuse and Mental Health Services Administration (SAMHSA) to set these funds aside for evidence-based programs for early serious mental illness, including psychosis.42 The legislation further directed SAMHSA and NIMH to develop guidance for states regarding effective FEP treatments. In response, NIMH synthesized the research literature,36 gathered training and program management resources developed in the ETP and IES studies, and made these materials available at no cost. The RAISE website43 contains a rich collection of program development materials—including treatment manuals, instructional videos, educational handouts, and worksheets—to assist states' efforts to initiate or expand CSC services for youth and young adults with FEP.
The CMHSBG set-aside could dramatically alter the landscape of early psychosis intervention services in the US. Based on plans submitted for set-aside funds, we estimate that 27 states will have one or more CSC programs operating by September 2015, a 69% increase over December 2013. Congress recently continued the CMHSBG set-aside for fiscal year 2015, offering continued support to the developing CSC movement.44
Coordinated Specialty Care for First-Episode Psychosis: Future Research and Policy Directions
Additional research is needed to maximize the effectiveness and reach of CSC programs. First, DUP in the US is much longer than international standards; innovative strategies are required for improving early detection of psychosis in the community, and achieving speedy referral and enrollment in appropriate treatment. The NIMH's initiative, Reducing the Duration of Untreated Psychosis (PAR-13-188, PAR-13-187), advances this line of research. Second, data are lacking with respect to long-term outcomes after discharge from CSC. To fill this gap, RAISE-ETP is observing participants for 5 years, but additional studies are needed to determine optimal strategies for maintaining and consolidating therapeutic gains after initial treatment.45 Finally, onset of psychotic disorders is typically preceded by an identifiable high-risk period.46 Development and testing of clinical staging and stepped-care treatment approaches for at-risk patients is a necessary step in building a robust armamentarium of preventive interventions.
The RAISE initiative demonstrates that clinicians in US community treatment settings can deliver CSC for FEP and improve patients' symptoms and functioning. The benefits of CSC are most pronounced when treatment is delivered soon after the onset of psychosis, making reduction of DUP a national priority. Recent legislation has provided additional funds to states for establishing or expanding CSC programs, and the number of such programs in the US is growing rapidly. These developments set the stage for a national learning health care network among early psychosis clinics in the US, which will further align science and clinical practice in early psychosis.
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- Melle I, Larsen TK, Haahr U, et al. Prevention of negative symptom psychopathologies in first-episode schizophrenia: two-year effects of reducing the duration of untreated psychosis. Arch Gen Psychiatry. 2008;65:634–640. doi:10.1001/archpsyc.65.6.634 [CrossRef]
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- Leavey G, Gulamhussein S, Papadopoulous C, Johnson-Sabine E, Blizard B, King M. A randomized controlled trial of a brief intervention for families of patients with a first episode of psychosis. Psychol Med. 2004;34:423–431. doi:10.1017/S0033291703001594 [CrossRef]
- Zhang M, Wang M, Li J, Phillips MR. Randomised-control trial of family intervention for 78 first-episode male schizophrenic patients. An 18-month study in Suzhou, Jiangsu. Br J Psychiatry Suppl. 1994;24:96–102.
- Killackey E, Jackson HJ, McGorry PD. Vocational intervention in first-episode psychosis: individual placement and support v. treatment as usual. Br J Psychiatry. 2008;193(2):114–120. doi:10.1192/bjp.bp.107.043109 [CrossRef]
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Coordinated Specialty Care Team Member Roles and Associated Services
|Coordinated Specialty Care Role
||Cultivate referral networks, facilitate access to care, outreach to patients and family, coordinate clinical services, provide ongoing clinical supervision and oversight, assure team cohesion
||Weekly team meetings, coordination of services, coordinated specialty care training and supervision, 24-hour phone coverage for crisis management
|Pharmacotherapy and primary care coordination
||First-episode psychosis specific medication management, coordination with primary medical care provider
||Individual and group recovery-focused psychotherapy, including integrated substance abuse care when needed
|Family education and support
||Psychoeducation, relapse prevention counseling, and crisis intervention services for family members
|Supported employment and education
||Facilitate return to school or competitive work, provide ongoing client support after job or school placement
||Assertive case management in clinic and community settings to address practical problems, and coordinating social services across multiple areas of need