Early Interventions for Psychosis First Episodes and High-Risk Populations: Proceedings of a Workshop (2023) / Chapter Skim
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Proceedings of a Workshop
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approximately 100,000 people develop psychosis in the United States every year, with early episodes often appearing when a person is in their late teens to mid-twenties. Psychotic illnesses, such as schizophrenia and bipolar disorder, come with a risk of significant individual long-term impairment.2 Research has demonstrated that appropriate treatments and supports can help prevent the full onset of psychotic illness for persons in a highrisk state and can improve long-term outcomes for those who have already experienced a first episode (Correll et al., 2018; Fusar-Poli et al., 2017; McGorry, 2015)
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, untreated individuals suffer, family relationships are disrupted, and communities absorb new burdens because of the serious impacts of the condition. "The good news, though, is that in the last 20 years or so, we have begun to see a lot of promise in this area," she said, referring specifically to coordinated specialty care (CSC)
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(McGorry) Effectiveness of Treatment • Engaging people in the first appointment in coordinated specialty care (CSC)
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have been archived online.4 IDENTIFYING POPULATIONS AT RISK FOR PSYCHOSIS AND INTERVENTIONS TO REDUCE RISK Patrick McGorry, executive director of Orygen and professor of youth mental health at the University of Melbourne, Australia, described how, when he first began his training in the 1970s, psychiatrists were telling young people with a schizophrenia diagnosis that they had no hope of recovery and their lives were over. McGorry explained that this notion, which has proved to be wrong, came from Emil Kraepelin's concept of 4 See https://www.nationalacademies.org/event/07-11-2022/early-interventions-for-psychosisfirst-episodes-and-high-risk-populations (accessed September 16, 2022)
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The current goal of treatment for schizophrenia and other psychotic illnesses is to bend the outcome curve and reduce the burden of disease (Light and Swerdlow, 2015)
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The original goal of his work was to try to sharpen the prediction for psychosis, but he and his collaborators realized that the micro phenotypes that they were seeing in the early stages are actually relevant to a range of different late macro phenotypes, such as schizophrenia, depression, bipolar disorder, personality disorder, and substance use disorder. His research is now focusing on the opportunity to identify biomarkers for these conditions and to intervene earlier in these other mental health disorders as well.
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government provided $100 million in FYs 2016 and 2017 to establish 187 community clinics that provide early intervention for psychosis. McGorry emphasized that early intervention is cost effective and not intervening for first episodes of psychosis is actually wasting money (Cam 8 See https://www.nimh.nih.gov/health/topics/schizophrenia/raise (accessed September 16, 2022)
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McGorry stressed that the key is to strengthen early intervention, make it the global standard of care, and put it in the context of broader youth mental health care and early intervention, given that most adult psychotic disorders emerge in the adolescence/young adult period. The Epidemiology and Social Patterning of Psychosis Deidre Anglin, associate professor of clinical psychology in the Department of Psychology Doctoral Clinical Program at City College of New York, said that although much of the research on social location12 and iden 10 Clozapine is U.S.
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. The results of a study exploring the relationship between ethnicity and diagnosis using a national database of serious mental illness in veterans confirms continued ethnic disparities in diagnostic patterns (Blow et al., 2004)
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. More recently, a study of more than 300,000 people in the All of Us Research Program13 found increased odds for experiencing psychosis for Black individuals compared to White individuals, while multiracial individuals had even higher odds (Barr et al., 2022)
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. To better understand the role of neighborhood, social determinants, and racism has on ethnicity and diagnoses, Anglin and her collaborators examined well-being among young Black people with first episode psychosis through a different lens.
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Nguyen 16 See https://screening.mhanational.org/screening-tools/ (accessed October 4, 2022)
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She explained that it is difficult to uncouple the effects of the pandemic from her organization's outreach efforts to publicize the website, but in her view, this is a sign of the elevated level of stress that put individuals at higher risk of scoring positive. "What does this mean about the duration of untreated psychosis, or the likelihood that a young person might experience their first episode as a result of stress related to COVID?
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19 See https://mhanational.org/mhamapping/mha-state-county-data (accessed November 13, 2022)
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Nguyen added that she sees a great deal of trauma and distress among young people, and it is not known what this will mean for them and their brains at such a critical stage of development. Dost Öngür, chief of McLean Hospital's Psychotic Disorders Division, asked whether a more troubled society will mean more psychotic disorders and, given the lead time for the emergence of these conditions, whether the burden of mental illness, and particularly severe mental illness, will be higher in the coming decades.
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Nguyen said that it is also important to reduce the fear and shame associated with psychosis, and to provide hope to patients; "giving a person a sense of hope for the future is so profound." As a mental health advocate and someone living with a mental illness, Nguyen said she believes that this type of connection and reassuring messages can be as powerful as medication in many ways for reducing symptoms. "This is where engaging with patients and community participatory research helps reorient ourselves to what matters for young people as they are recovering," she said.
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. This agreement allows Ott to provide per-protocol medication management, which means that she can receive a referral for a mental health assessment, medication initiation or discontinuation, dose adjustments, laboratory monitoring, medication refills, and assessments for medication effectiveness and side effects.
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If so, then Ott has a discussion with the clinician to address their concerns. Acceptable answers include the patient has a needle phobia due to the regular blood draws when people are on clozapine, is unable to come in for the monitoring required, or is affected by social determinants of health.
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Oluwoye and her colleagues have examined areas with disparities in access to care to inform efforts to provide resources to rural communities. She noted that the spatial distribution of services contributes to referral decisions and treatment delays, which, as previous speakers pointed out, can have consequences for the duration of untreated psychosis (Oluwoye et al., 2022a)
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Black individuals are up to five times more likely to receive a diagnosis of schizophrenia spectrum disorder, which Anglin referred to as overdiagnosis. In addition, Black individuals' experiences of racism and discrimination contribute to mistrust of the medical system, disengagement, and delays in and lack of treatment (Oluwoye et al., 2021)
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That model provides supported education and medication management and community outreach and education. Teams include the voice of caregivers of someone with psychotic illness to provide the lived experience perspective.
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Niendam observed that even with all the different programs and funding mechanisms, access to early-psychosis programs is still limited. Programs tend to be small, so they cannot reach the entire community, and funding is so limited in rural areas and other regions with low population density that those counties cannot start a program.
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Training is still focused on adults or children rather than taking a developmental perspective. Adult practitioners often are not oriented to recovery, systems, or family and often have negative views of psychosis based on seeing people with chronic illness in a hospital or incarceration setting, while youth practitioners often receive little training on serious mental illnesses.
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Too often, young people return to community mental health care with medication and case management, usually in an adult system that sees their illness as chronic and debilitating with no hope for recovery. This is not a great space to move into after a supportive and hopeful environment.
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OnTrackNY Lisa Dixon, professor of psychiatry and director of the Division of Behavioral Health Services and Policy Research at Columbia University Medical Center and director of the Center for Practice Innovation at the New York State Psychiatric Institute, explained that OnTrackNY24 is a mental health treatment program that empowers young people across the state to make meaning of their experiences and pursue their goals for school, work, and relationships. It does this by supporting the well-being of those who are impacted by unexpected changes in their thinking and perceptions.
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Turning to the details of the program, Dixon explained that eligibility is limited to individuals within 2 years of onset of non-affective psychosis, which is more specific than California's program. OnTrackNY also deploys its resources in the post-help-seeking phase of care, develops strategies for care providers aimed at reducing the duration of untreated psychosis and funds, and monitors the outreach activities that it expects its teams to conduct.
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That clinician also encourages participants to advocate for recoveryoriented services after transition. Dixon noted the limited availability of recovery-oriented, flexible youth- and family-oriented services that use shared decision making, and of supported education, employment, peer support, and family-based services.
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Anita Everett, director of the Center for Mental Health Services at SAMHSA (the federal agency that administers the mental health block grant set-aside for first-episode psychosis programs) , asked the panelists 25 States are prohibited from using Medicaid funds for care provided in institutions for mental disease (psychiatric hospitals or other residential treatment facilities with more than 16 beds)
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. Nev Jones, assistant professor at the University of Pittsburgh, asked the panelists to comment on the challenge of balancing prevention and intervention for serious mental illness and providing funding for programs that reach individuals at high risk versus only treating individuals with first-episode psychosis.
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One NAVIGATE component included psychopharmacology, and Kane and his collaborators developed computerized decision support system for the prescribers. Other components were measurement-based treatment; family treatment, including psychoeducation; individual resiliency training, supported employment, and supported education (see Figure 4)
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FIGURE 4 Components of the NAVIGATE CSC intervention used in the RAISE Trial. SOURCE: Presented by John Michael Kane on July 11, 2022.
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community mental health centers that found 85 percent of patients in firstepisode psychosis or early-phase treatment were willing to consider such a medication if it was presented in the right fashion and involved shared decision making to ensure understanding of the benefits and risks (Kane et al., 2020)
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Sabrina Ereshefsky, a postdoctoral research scholar in the early-psychosis program at UCD, explained that the biopsychosocial model of psychosis expands on the bio-ecological model that Anglin discussed in the workshop's first session by including the interactions of context and environmental factors with biological, psychological, and social factors that lead to various health and mental health outcomes. For example, a young Black person growing up in the United States would have various aspects of their environment, such as their teachers, school system, and systemic racism, that affect them differently from how they would affect a White individual.
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Ereshefsky noted that the racial trauma is deeply rooted in the United States, due to pervasive systems of structural racism that have also shaped the historical and current practices of diagnosing and treating individuals with psychosis. Systemic racism and social environments are fundamental causes of U.S.
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Structural racism historical cultural institutional interpersonal fundamental cause Neighborhood-level Collective trauma disadvantage Individual-level Everyday social disadvantage discrimination multilevel exposures Cumulative stress Altered Perinatal Genetic neurobiology complications vulnerability potential mediating mechanisms Extended psychosis phenotype FIGURE 5 Hypothesized model of systemic racism and psychosis in the United States. SOURCE: Presented by Sabrina Ereshefsky on July 11, 2022; Reprinted with permission from the American Journal of Psychiatry, Volume 178, Issue 7, "From Womb to Neighborhood: A Racial Analysis of Social Determinants of Psychosis in the United States," 35 Anglin et al.
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Rates of such factors, such as obstetric or birth complications, are higher in racial minoritized populations, acculturated immigrants, and other groups experiencing discrimination in the United States. Within the frame of systemic racism, she noted, these complications likely develop as a result of an interaction with cumulative stress and repeated discrimina
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These groups also suffer disproportional social determinants of health, and historically, they have also not been included in explanatory models of psychosis (Anglin et al., 2021)
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communities and how the unique experiences of these groups influence psychotic experiences, illness development, access to care, and ability to recover," she concluded. State Mental Health Agency Support for CSC Programs and Use of the Federal Mental Health Block Grant 10 Percent Set-Aside Ted Lutterman, senior director of government and commercial research at the National Association of State Mental Health Program Directors (NASMHPD)
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"We are trying to think how we can combine the work on 9-8-8 crisis services to get people better engaged and identified and into services sooner for early psychosis," explained Lutterman. Based on the NIMH RAISE study's demonstration of the positive impact of CSC on early-psychosis outcomes, Congress passed a 5 percent set-aside from the mental health block grants to states in order to fund treatment for early psychosis in 2014, which added $22.9 million in new funds so that states would not have to allocate money from existing programs to establish new ones (SAMHSA, 2014)
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However, said Lutterman, self-reported improvement was much less for substance use, suicidal ideation, self-harm, and being homebound. FIGURE 6 Percent of CSC early-psychosis program clients experiencing adverse life events, before and after participation in the program.
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-- a measure used in the block grant evaluation -- and over half used a QLS. FIGURE 8 Number of coordinated specialty care programs for early psychosis by state, 2022.
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SOURCE: Presented by Ted Lutterman on July 11, 2022. FIGURE 10 Coordinated specialty care component use among early-psychosis programs.
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Twenty-three states are also putting their own funds into early-psychosis services; in 2021, that was $18.2 million in addition to federal block grant funds. "The basic take-home we hear is that the block grant and state dollars are subsidizing people with Medicaid and private insurance," said
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The supports that states identified as their top priorities included the following: • Public education campaigns, to shorten the duration of untreated psychosis by increasing awareness of existing programs among the general public and targeted audiences; • A multistate consortium to implement and test novel strategies for serving people with first-episode psychosis in rural and remote areas; • Training for state staff on how to implement and evaluate interven tions to help assure cultural relevance of programming for first episode psychosis; • Analysis and consultation to support payment design and payment rates; and • Assistance in analyzing and benchmarking outcome data. Discussion Öngür asked Kane whether he had an explanation for the finding that the duration of untreated psychosis was a moderating factor for the 2-year but not the 5-year outcome from the RAISE study.
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In federal FY 2022, the MHBG was just under $758, so about $75 million was distributed for these programs. She noted that the block grant set-aside enabled BOX 2 Suggestions for Future Research from Individual Workshop Participants • Focusing on the correlation between structural racism and psychosis risk and incorporating more social and environmental factors into research to improve public health overall.
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Everett explained that in 2022, 15 state mental health agencies identified technical assistance needs related to CSC and early serious mental illness programs in their MHBG applications. The most common request had to do with financing and sustainability, with other frequent requests for help with training care providers beyond what they receive in graduatelevel programs, curricula on cultural and linguistic competence, expanding programs into rural and remote areas, and collecting and monitoring data for outcomes.
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From Heinssen's vantage point as a long-time NIMH health scientist administrator, this may be the fastest and most extensive U.S. implementation of an evidence-based mental health treatment.
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In terms of policy opportunities to address some of those challenges, Heinssen said that the national 9-8-8 system, along with the 9-8-8 Implementation Act that Congress introduced this year,35 provides an opportunity for the early-psychosis care community to engage in conversations about how mobile crisis units, crisis respite centers, and other emergency treatment services can connect to CSC programs. The goal is a seamless referral process that will allow a person who is experiencing an episode of psychosis to move rapidly from an acute crisis into a warm and welcoming space that provides necessary stabilization services.
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The Department of Labor has identified the youth and adult programs authorized by the Labor Workforce Innovation and Opportunity Act of 201437 as a mechanism to broaden supported education and employment services and provide a career ladder for people with first-episode psychosis. The certified community behavioral health clinics expansion initiative38 announced in March 2022 establishes step-down care from CSC programs to tailored outpatient treatment that may consolidate CSC gains and foster long-term recovery.
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Among the successes are the Bipartisan Safer Communities Act41 and Community Mental Health Services Block Grant programs. She noted that the House of Representatives has passed a bipartisan bill that would reauthorize the block grant program42 and retain the 10 percent set-aside for early-psychosis programs.
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; 42 U.S.C. Section 300x-1 (Community Mental Health Block Grant)
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She said, "It is important in all services, including coordinating specialty care, that we start requiring patient experience data and ultimately paying on it because it matters how you are treated as a person in these services." Moreover, those data should be broken down by demographics to inform and address equity issues. Giliberti also noted that resources are being devoted to place mental health professionals in schools and elsewhere, which is a positive move.
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For solutions, Jones reiterated the importance of strengthening the workforce and echoed Niendam's idea of working with professional associations to ensure that curricula, particularly for social work and counseling programs, include some basic training on early psychosis and other serious mental illnesses. Peer workers are essential but not sufficient, and one challenge is the scant research on the effect of peers in psychosis-specific contexts, such as CSC.
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"Work that addresses social determinants is high-level skilled work and should be compensated accordingly," said Jones. To support employee retention, Jones suggested expanding loan repayment programs for health workers who are in disadvantaged areas or in certain types of programs, such as CSC.
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Jones mentioned education funding streams from the Departments of Education and Labor that are focused on antipoverty career development projects; they do not explicitly exclude youth or adults with psychosis or serious mental illness, but they do not target them, either. Giliberti won 45 Rehabilitation Act of 1973, Public Law 112, 93rd Cong., 1st sess.
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His concern is that many of the people diagnosing in community mental health centers are not psychiatrists. Rather, they are social workers, case workers, and other staff who have not had adequate training in the diagnostic processes necessary for psychosis, which is quite challenging.
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No specific group is focused on CSC, but this group has covered many of the topics the workshop speakers have discussed and would be a place to raise the issues the workshop has identified. Everett added that the Interdepartmental Serious Mental Illness Coordinating Committee,50 which the 21st Century Cures Act51 established, brings together the various federal agencies responsible for different aspects of the lives of adults with serious mental illness and children with serious emotional disturbance, and links them with relevant private-sector partners.52 The committee makes specific recommendations for actions that agencies can take to better coordinate service delivery.
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Jones noted that a recent survey of thousands of faculty and graduate students found an overrepresentation of individuals with lived experience among those in clinical psychology training programs for almost every mental health disorder except psychosis (Victor et al., 2022) ; only one person reported having a psychotic disorder.
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It will also be important to address the adverse experiences, structural racism, and other factors that are creating a greater need for mental health care. Öngür recounted a trip he took to Denmark in 2021; he found that Denmark is reaching 60–70 percent of the people who would benefit from a first-episode psychosis clinic and there is a proposal to the government to open new services in order to get closer to reaching 100 percent of those in need.
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• Implement multilevel interventions that truly include the community, are centered on community, and focus on using community resources, not just for coordinated specialty care (CSC) but to improve the pathways to care.
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• Work with professional associations to ensure that training curricula, par ticularly for social work and counseling programs, include basic training on early psychosis and other early serious mental illnesses. (Niendam, Jones)
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