Abstract
Available data have demonstrated the clinical benefits and cost-effectiveness of multi-component treatment packages for individuals early in the course of psychotic-spectrum disorders. In response, an unprecedented effort aims to disseminate such multi-component treatment programs—referred to as Coordinated Specialty Care (CSC)—throughout the United States. We review the evidence in support of CSC care for first-episode psychosis and highlight specific policy reforms that may facilitate the successful dissemination and eventual improvement of CSC programs for first-episode psychosis. Among proposed reforms are novel financing strategies for CSC services and incentivizing of continued collaboration between academic and community agencies to facilitate sustained dissemination and refinement of CSC.
Keywords
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Early intervention improves psychotic disorders and saves money. Community–academic partnerships may improve treatment access and quality.
Key Points
Psychotic-spectrum disorders are some of the most devastating illnesses affecting humankind.
Multi-component care for first-episode psychosis is clinically beneficial and cost-effective.
Given variability in the components of existing Coordinated Specialty Care (CSC) programs, programmatic success may be best determined by a program’s ability to meet benchmarks for key patient-centered outcomes among their clientele.
Successful dissemination and refinement of CSC may benefit from changes in funding strategies, as well as ongoing collaboration between academic and community health centers.
Psychotic-Spectrum Disorders: An Overview
Psychosis is a clinical syndrome that affects numerous domains, including affective, cognitive, motivational, sensory, and social functioning. Characteristic features of this syndrome include positive symptoms (e.g., delusions and hallucinations), negative symptoms (e.g., reductions in motivation, volition, and emotion experience/expression), declines in cognitive and social functioning, and disorganized speech and behavior (American Psychiatric Association, 2013). Although psychosis can emerge as part of various physical illnesses (White, Anjum, & Schulz, 2006), this syndrome is most commonly associated with psychotic-spectrum disorders such as schizophrenia-spectrum disorders (e.g., schizophrenia, and schizoaffective disorder) and affective disorders with psychotic features (e.g., bipolar disorder with psychotic features).
Under usual systems of care, the natural course of psychotic-spectrum disorders is characterized by significant morbidity and mortality. Individuals with psychotic-spectrum disorders typically experience repeated symptomatic relapses that tend to cluster in the first few years following the onset of psychotic symptoms (Mason, Harrison, Glazebrook, Medley, & Croudace, 1996) and are complicated by the common presence of numerous comorbid psychiatric concerns, including episodes of depressed mood, anxiety disorders, substance use, and suicidality (Buckley, Miller, Lehrer, & Castle, 2009; Morgan et al., 2012). The life expectancy of individuals with psychotic-spectrum disorders is reduced by 10 to 25 years as compared with their age-matched peers (Laursen, Munk-Olsen, & Vestergaard, 2012). Although suicide is a key contributor to this mortality gap, elevated rates of cardiovascular, infectious, and pulmonary diseases are the primary cause of this reduced life span (Shiers, Jones, & Field, 2009). Finally, individuals with psychotic-spectrum disorders typically experience profound declines in cognitive abilities that serve as “rate-limiting factors” with regard to key aspects of real-world functioning, including social, vocational, and educational functioning (Green, 1996).
Given the psychiatric, physical, and functional concerns associated with psychotic-spectrum disorders, these illnesses are recognized as some of the most devastating illnesses affecting humankind. This conclusion was most clearly articulated within the ongoing Global Burden of Disease (GBD) Study, which seeks to quantify and compare the morbidity and mortality associated with health conditions worldwide (Murray & Lopez, 1996). To facilitate this effort, the GBD Study assigns disability weights to hundreds of health conditions that are designed to quantify the health loss associated with each specific condition. These values range from 0 to 1, with a score of 0 indicating perfect health and a score of 1 indicating a health state equivalent to death. Within the two most recent iterations of the GBD Study (Salomon et al., 2015; Salomon et al., 2013), the acute phase of schizophrenia—during which individuals experience active hallucinations and delusions—received the highest disability weight among all health conditions included in the GBD Study, thus suggesting that this is the worst health state, aside from death, that humans can experience. Of note, schizophrenia in its residual state—where hallucinations and delusions are absent, or only present in an attenuated state—was assigned the ninth highest disability weight in each of the last two iterations of the GBD study. These results highlight the room for improvement in treating psychotic disorders, where symptomatic reduction to a residual state (i.e., the ninth worst health condition other than death) is often considered a “success” (Lipkovich et al., 2009).
First-Episode Psychosis: A “Critical Period” for Intervention
Despite the growing number of evidence-based psychosocial and pharmacological treatments for individuals with psychotic-spectrum disorders, the “unspeakable truth” remains that clinical and functional outcomes for most individuals with psychosis are poor (McGrath, 2012). Although limited access to effective treatments for psychosis may contribute to these poor outcomes (Kohn, Saxena, Levav, & Saraceno, 2004), the findings also reflect the limited effectiveness of existing treatments in ameliorating the severity and breadth of challenges associated with psychotic-spectrum disorders. Yet, growing evidence suggests that outcomes for individuals with psychotic-spectrum disorders can nonetheless be meaningfully improved in the context of imperfect treatment options by reducing the duration of time between the first onset of psychotic symptoms and the receipt of adequate psychiatric care. This period, termed the duration of untreated psychosis (DUP), is typically 2 years among individuals with psychotic-spectrum disorders and predicts symptomatic and functional outcomes, with a longer DUP associated with worse outcomes (Perkins, Gu, Boteva, & Lieberman, 2005).
Two converging lines of research have suggested mechanisms that may underlie the association between DUP and course of illness. First, prospective studies of the course of psychotic-spectrum disorders have repeatedly demonstrated that the majority of the decline in health status and functioning emerges during the first few years following the onset of psychosis (Lieberman et al., 2001)—a period of time often referred to as “first-episode psychosis” (Breitborde, Srihari, & Woods, 2009). Second, individuals earlier in the course of a psychotic disorder may be more responsive to both pharmacological and psychosocial treatments, as compared with individuals with more long-standing illnesses (e.g., Goldstein, 1996; Robinson et al., 1999). For example, rates of symptomatic remission following initiation of antipsychotic medication are noticeably higher among individuals with first-episode psychosis, as compared with individuals with long-standing psychotic-spectrum disorders (Robinson et al., 1999). Drawing on these two lines of research, scholars have suggested that the first few years of psychotic-spectrum disorders may be a “critical period” in which the provision of targeted, phase-specific intervention could dramatically improve the usual course of psychotic-spectrum disorders (Birchwood, Todd, & Jackson, 1998). Thus, despite the limitations of currently available treatments, delivery of these treatments early in the course of psychotic-spectrum disorders appears to offer an opportunity to meaningfully improve outcomes among individuals with psychosis.
Does Early Intervention for Psychosis Work?
Drawing on the “critical period hypothesis,” several trials of multi-component treatment packages for individuals with first-episode psychosis have been completed to date. Recognizing the multiple factors that contribute to the morbidity and mortality associated with psychotic-spectrum disorders, these multi-component treatments comprise multiple interventions (e.g., medication management, psychotherapy, and vocational support)—all designed to address more comprehensively the various treatment needs and recovery goals of individuals with first-episode psychosis and their caregiving relatives, as compared with usual (i.e., less intensive) care. The first controlled trials were completed by four independent research groups across three European countries: Lambeth Early Onset Team (LEO: Craig et al., 2004), Croydon Outreach and Assertive Support Team (COAST: Kuipers, Holloway, Rabe-Hesketh, & Tennakoon, 2004), the OPUS trial (Petersen, Jeppesen, et al., 2005), and the Norwegian site of the International Optimal Treatment Project (Grawe, Falloon, Widen, & Skogvoll, 2006). Details of these trials appear in Table 1.
Characteristics of Selected Multi-Component Treatment Programs for FEP.
Note. FEP = first-episode psychosis; LEO = Lambeth Early Onset Team; TAU = treatment as usual; COAST = Croydon Outreach and Assertive Support Team; IOTP = International Optimal Treatment Project; OASIS = Outreach and Support Intervention Services; STEP = Specialized Treatment Early in Psychosis project; RAISE-IES = Recovery After an Initial Schizophrenia Episode–Implementation and Evaluation Study; RAISE-ETP = Recovery After an Initial Schizophrenia Episode–Early Treatment Program; EPICENTER = Early Psychosis Intervention Center.
Individuals who had previously disengaged from clinical services following their initial presentation were also allowed to enroll in this study.
Provided by community providers not affiliated with EPICENTER.
Apart from the COAST study, which had the shortest follow-up period (i.e., 9 months), smallest sample size (N = 59), and largest attrition rate, these controlled trials demonstrate a clear superiority of multi-component care for first-episode psychosis as compared with usual care. More specifically, across the remaining three European trials, individuals with first-episode psychosis who received multi-component care experienced greater reductions in positive and negative symptoms of psychosis, demonstrated larger reductions in substance use, participated more in vocational or educational activities, showed a larger increase in social functioning, were less likely to drop out of treatment, and reported greater treatment satisfaction, as compared with individuals receiving usual care (Craig et al., 2004; Garety et al., 2006; Grawe et al., 2006; Petersen, Jeppesen, et al., 2005; Petersen et al., 2007; Petersen, Nordentoft, et al., 2005). With regard to rehospitalization during the course of treatment, length of stay (Petersen, Jeppesen, et al., 2005) and frequency of rehospitalization (Craig et al., 2004) were lower among individuals who received multi-component care, as compared with those who received usual care—however, one study did not find an effect of multi-component care on rehospitalization (Grawe et al., 2006). Health economic evaluations of the LEO and OPUS trials suggest that such multi-component treatment packages are more cost-effective than usual care for psychotic-spectrum disorders (Hastrup et al., 2013; McCrone, Craig, Power, & Garety, 2010). Unfortunately, long-term follow-up evaluations of these studies suggest that the benefits produced by multi-component treatment packages relative to standard care do not endure after individuals complete their participation in these specialized, time-limited programs (e.g., Bertelsen et al., 2008).
Following on the success of European trials of multi-component treatment packages for first-episode psychosis, results from five trials completed in the United States have been published. Details are in Table 1. The first published trial—Outreach and Support Intervention Services (OASIS: Uzenoff et al., 2012)—was an uncontrolled study of multi-component care for individuals with first-episode psychosis. Compared with their initial presentation, after 1 year of treatment at OASIS, individuals with first-episode psychosis experienced reductions in positive and negative psychotic symptoms, improvements in role functioning (e.g., self-care skills and participation in social relationships), and greater school enrollment. This project was shortly followed by the first randomized controlled trial of multi-component care for first-episode psychosis in the United States: the Specialized Treatment Early in Psychosis project (STEP: Srihari et al., 2015). At 1-year follow-up, individuals with first-episode psychosis who received the STEP multi-component treatment package were less likely to have been rehospitalized and more likely to be employed or in school than individuals randomized to standard care. Although the results of the OASIS and STEP trials were not surprising given the existing international literature demonstrating the benefits of multi-component care for first-episode psychosis, they provided an important demonstration that such services could be provided effectively within the context of the U.S. mental health system.
In response to the growing evidence in support of the efficacy of early intervention for psychosis and to support the continued growth and evaluation of such programs in the United States, the National Institute of Mental Health (NIMH) funded two simultaneous projects of multi-component care for first-episode psychosis in 2009 as part of the Recovery After an Initial Schizophrenia Episode (RAISE) project. These two projects (i.e., RAISE Implementation and Evaluation Study [RAISE-IES] and RAISE Early Treatment Program [RAISE-ETP])—were designed to explore issues related to CSC—the name assigned to multi-component treatment programs for first-episode psychosis in the United States (Azrin, Goldstein, & Heinssen, 2016).
RAISE-IES, which was originally designed as a randomized controlled trial, was redirected by NIMH to focus on the development of tools needed to facilitate the dissemination of multi-component care for first-episode psychosis (Dixon et al., 2015). Results from an open trial of the RAISE-IES multi-component treatment program (i.e., RAISE Connection) found that the individuals participating in this program experienced improved social and occupational functioning and reduced positive and negative symptoms (Dixon et al., 2015).
The recently completed RAISE-ETP project was a randomized controlled trial of multi-component care for first-episode psychosis completed with 34 community mental health centers across 21 states (Kane et al., 2016). Individuals with first-episode psychosis who received the multi-component treatment package called NAVIGATE experienced greater improvements in quality of life and reductions in depressed mood as compared with individuals randomized to usual care. These benefits appeared to be moderated by DUP: Individuals with shorter DUP experienced the greatest clinical improvements. Despite no group difference in reduced positive and negative symptoms, overall cognitive functioning, or rates of rehospitalization among individuals randomized to NAVIGATE versus those randomized to usual care (Kane et al., 2016; Schooler, 2016), receipt of NAVIGATE was associated with increased participation in work or school (Rosenheck, Mueser, et al., 2016). A subsequent cost-effectiveness study (Rosenheck, Leslie, et al., 2016) found that although NAVIGATE was more expensive than standard care, these additional costs were likely offset by the clinical benefits experienced by individuals who received the NAVIGATE treatments (i.e., improved quality of life). Similar to the analyses of the RAISE-ETP clinical data completed by Kane and colleagues (2016), DUP moderated the cost-effectiveness results, with the cost-effectiveness of NAVIGATE being greatest for those with shorter DUP.
The final published trial of CSC in the United States is the Early Psychosis Intervention Center (EPICENTER) study. This uncontrolled trial is the only published CSC trial to include a form of individual therapy designed to address deficits in cognitive functioning within its multi-component treatment package (metacognitive remediation therapy: Breitborde & Moe, 2016). In the first published evaluation of EPICENTER (Breitborde et al., 2015), the receipt of EPICENTER care was associated with numerous positive outcomes among individuals with first-episode psychosis. More specifically, after 6 months of participation in EPICENTER care, individuals with first-episode psychosis experienced reductions in positive symptoms of psychosis, improvements in cognitive functioning, increased social functioning, increases in rates of participation in competitive work and/or school, and decreases in rates of substance use—in particular, use of alcohol and cannabis. With regard to service utilization, rates of hospitalization and contact with the legal system also declined among EPICENTER participants. EPICENTER was found to be a cost-saving intervention program, with the per-person costs of care during the first 6 months of EPICENTER care being more than US$17,000 less than the cost of care incurred by EPICENTER participants during the 6 months prior to enrollment in EPICENTER. Secondary analyses have demonstrated that receipt of EPICENTER care is associated with improvements in depression, anxiety, social cognition (i.e., theory of mind and social perception), quality of life, and self-efficacy with regard to management of positive symptoms of psychosis (Breitborde, 2012; Breitborde, Moe, Woolverton, Harrison-Monroe, & Bell, in press).
In total, research in the United States has largely replicated findings from previous European studies with regard to the efficacy of multi-component care in the treatment of first-episode psychosis. These findings, in combination with numerous replications of the clinical benefits and cost-effectiveness of multi-component care for first-episode psychosis obtained across several continents (e.g., Chen et al., 2011; Mihalopoulos, Harris, Henry, Harrigan, & McGorry, 2009), have sparked a growing international mental reform effort designed to advance and expand early intervention for psychotic-spectrum disorders. At present, multi-component treatment programs for first-episode psychosis are present on every continent with the exception of Antarctica (de Araújo & Chaves, 2012; Reading & Birchwood, 2005). Countries such as Australia, Denmark, and the United Kingdom have established federally supported nationwide networks of multi-component treatment programs for first-episode psychosis (Hughes et al., 2014; Joseph & Birchwood, 2005; Nordentoft et al., 2015). Within the United States, the federal government allocated US$24.8 million in both fiscal years 2014 and 2015 for the expansion of CSC programs. The allocated federal funds were doubled starting in fiscal year 2016 and, at present, 32 states currently offer or are working to launch CSC programs for first-episode psychosis (Azrin et al., 2016).
Policy Implications for Early Intervention for Psychosis in the United States
Given the relative recency of trials demonstrating the benefits of multi-component care for first-episode psychosis in the United States, recent nationwide dissemination efforts of this intervention are especially noteworthy. In a country where an estimated 17 years elapse before even 14% of scientific discoveries enter into routine clinical practice (Balas & Boren, 2000), the speed at which the federal government has provided funding and guidance to support the expansion of CSC services was even described by one of the RAISE-ETP investigators as “unusual” (Anderson, 2015). Although such rapid dissemination is a boon for the typically underfunded public mental health system, it has highlighted several policy implications with regard to the effective delivery of early intervention for psychotic-spectrum disorders.
As evidenced in Table 1, key variables associated with the provision of CSC for first-episode psychosis vary significantly. To date, programs have differed not only on how they define “first-episode psychosis” but also on the composition of interventions included within specific CSC programs. Thus, although the success of past large-scale mental health dissemination projects has been measured by the level of fidelity with which community providers deliver an intervention (McHugo et al., 2007), similar metrics may not be appropriate measures of success for an intervention package where there is still debate with regard to key therapeutic ingredients and the appropriate population for services. This hypothesis comports with recent data indicating that individuals with first-episode psychosis receiving care at multi-component treatment programs with the highest fidelity scores do not necessarily experience the best treatment outcomes (Jones et al., 2016; see also Gutacker et al., 2015). In this context of therapeutic uncertainty, the success of CSC programs may be best determined by a program’s ability to meet benchmarks for key patient-centered outcomes among their clientele (e.g., percentage of individuals with DUP < 3 months, rates of rehospitalization, etc.: Srihari, Jani, & Gray, 2016). Financial incentives for the assessment and achievement of such benchmarks may facilitate the continued success of the most effective CSC programs, but would also make outcomes transparent across different models of care to facilitate the restructuring and improvement of less effective programs (Sytema & van der Krieke, 2013)
Second, even in the context of new federal funds supporting nationwide expansion of CSC, many states still experience financial barriers to implementing such programs. The amount of federal funding provided to states in support of the expansion of early intervention services for psychosis was set as a fraction the of Mental Health Block Grants awarded to each state (5% in fiscal years 2014 and 2015 and 10% in fiscal year 2016) and ranged from US$54,319 provided to Wyoming to US$6,918,048 provided to California. However, given the estimated yearly operating expenses of a CSC program (Humensky, Dixon, & Essock, 2013), only 32 states received sufficient funds to cover the operation costs of a single program in fiscal year 2016. This is problematic, given evidence that the best predictor of successful implementation of early intervention services for psychosis is the presence of dedicated funding to support these efforts (Catts et al., 2010). With such funding shortages and challenges in obtaining funding for certain CSC components (e.g., supported employment: Drake, Bond, Goldman, Hogan, & Karakus, 2016), states may need to explore innovative funding strategies to support the development and maintenance of CSC programs. Although the Affordable Care Act currently provides states with significant leeway in experimenting with novel payment strategies such as bundled or episode-based payments (Mechanic, 2012), few states have attempted to use such strategies to support the growth of CSC programs. One notable exception is the Institute for Mental Health Research EPICENTER (IMHR; 2016) program in Phoenix, Arizona, which negotiated to receive (a) 135% of the typical Medicaid reimbursement rate to support the cost of the specialized services that it provides and (b) payment bonuses for achieving key patient-centered outcomes among their clientele (e.g., percentage of people employed or in school).
Finally, recognizing the limited effectiveness of available treatments for psychotic disorders (McGrath, 2012), facilitating the continued dissemination of new and better treatments for psychosis to community mental health providers is critical. Among the many accomplishments of the RAISE-ETP program, arguably the most valuable may be the establishment of a pipeline to facilitate the rapid dissemination of evidence-based practices for first-episode psychosis to community mental health centers across numerous states. Establishing such partnerships between academic research centers and community agencies is an effective strategy to support the rapid and continued dissemination of evidence-based practices (Guest, Miller, Smith, & Hyleman, 2016). Unfortunately, incentives to create and maintain such community research partnerships (especially financial incentives) are often lacking. Consequently, state and federal payers should explore strategies to support ongoing collaborative relationships between academic research centers and community mental health centers.
Conclusion
Available data have demonstrated the clinical benefits and cost-effectiveness of multi-component treatment packages for individuals early in the course of a psychotic-spectrum disorder. In response has been an unprecedented effort to disseminate such multi-component treatment programs (i.e., CSC) across the United States. Significant policy changes have already occurred to support this effort. Continued reform needs to support developing and maintaining a nationwide network of CSC programs and to facilitate the continued dissemination of effective treatments for psychotic disorder to community providers.
Footnotes
Declaration of Conflicting Interests
The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Dr. Breitborde has completed paid and unpaid consultation for the Institute for Mental Health EPICENTER program.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
