6

Early Identification and Interventions for Youth and Adolescents with Serious Behavioral Health Conditions

Mental health and substance use disorders often arise early in adolescence and young adulthood. Earlier interventions are better than waiting until the condition has developed, yet many years can go by before people with these very serious conditions receive treatment. Common reasons for this lack of treatment include problematic access to medical care, incorporating the priorities of families in care decision making, and the transition from child-focused treatment to adult treatment settings.

A panel of four speakers looked at several of these disorders, including depression, bipolar disorder, and schizophrenia. All pointed to the need for early identification and treatment, which also has been gaining increased attention within the federal government and state governments. As moderator Kirsten Beronio of the U.S. Department of Health and Human Services noted, her department has been focusing on getting services and supports to people with mental health and substance use disorders. “There’s a lot of interest within the administration right now in thinking about those issues and redirecting some of the resources we have toward earlier intervention,” she said.

EARLY INTERVENTION IN BEHAVIORAL HEALTH CONDITIONS

Clinical staging is widespread in medicine. It informs prognosis, clinical course, and treatment, including personalized care. It places an individual on a probabilistic continuum of increasing potential disease severity, from

increased risk to prodome, first episode, first recurrence, and persistent illness.

In mental health, the natural history of a disorder also can move through a predictable temporal progression, said Mary Fristad, professor and vice chair for research and academic affairs in the Department of Psychiatry and Behavioral Health at Ohio State University’s Wexner Medical Center. Provision of timely and stage-appropriate treatment can modify the individual’s pattern of disease progression. Prognosis is generally more favorable with earlier diagnosis and intervention, as earlier treatments often have a more favorable risk-benefit ratio than those used later. (However, she noted, a caveat to keep in mind is that childhood onset can also confer greater genetic or other risk.) In particular, risk-staging provides a rationale for early intervention in depression, bipolar disorder, and schizophrenia, which are three of the four most burdensome problems in people ages 10 to 24 (Gore et al., 2011). “This notion of staging can really make a difference,” she said.

Vallarino et al. (2015) reviewed 29 studies to develop an evidence map of what is known about psychosocial interventions to change the early-stage course of bipolar disorder. They found that most treatments show greater effects on depressive symptoms than manic symptoms. This study did not find any major differences between bipolar-specific and transdiagnostic treatments. The evidence map in this study was hampered by lack of a uniform staging model to select patients, Fristad noted. Specific targets were not specified, such as the sleep-wake cycle or cognitive-emotional regulation. Also, comorbid problems were not well articulated, such as substance use, physical health issues, or inactivity. But the most serious drawback, said Fristad, is that the study considered only adolescents, not younger children, even though treatments often need to start in preadolescents. “We need to think younger than the teenage years. That’s not early enough if we want early intervention,” she said.

According to Birmaher and Brent (2007), major depressive disorder has prevalence in any given year of about 2 percent. By age 18, however, the cumulative risk is 20 percent. The prevalence for dysthymic disorder is 0.6 to 1.7 percent. For subsyndromal depression, where some meaningful symptoms of depression are causing some functional impairment, the prevalence is 5 to 10 percent. “It’s a real problem, and it’s not an uncommon problem,” said Fristad.

Depression in youth is linked to significant functional impairment, including risk for disruptive behavior and substance use disorders (Lewinsohn et al., 2003; Birmaher and Brent, 2007). In addition, recurrence rates are high: 40 percent in 2 years and 70 percent in 5 years. Between one-quarter and one-half of depressed children will develop a bipolar spectrum disorder within 2 to 5 years, explained Fristad.

Van Meter et al. (2011) did a meta-analysis of 150 psychopathology epidemiology studies from the past 50 years, 12 of which included mania or bipolar disorder, and found a prevalence rate of 1.2 percent for bipolar I, which is characterized by full mania but not necessarily full depression. For bipolar spectrum disorders, the prevalence was 1.8 percent in children from the ages of 7 to 21 and 2.7 percent in adolescents 12 and older. These rates are roughly comparable between the United States and other countries—1.7 percent in the United States for bipolar spectrum disorder versus 1.9 percent in the other five countries in the study. Rates are also comparable over time. “It has not increased over time, despite what people think,” Fristad said.

In a review of evidence-based psychotherapy for bipolar disorder, Fristad and MacPherson (2014) looked at interventions for which the level of evidence is well established, probably efficacious, possibly efficacious, and experimental. Family psychoeducation and skill building was highest ranked, but no psychosocial treatment attained the highest category. Two randomized controlled trials have been conducted with children at high risk for bipolar spectrum disorders. Nadkarni and Fristad (2010) did a study of 165 children, 37 of whom had depression with transient manic symptoms. Eight sessions of psychoeducational psychotherapy for 8- to 12-year-olds with mood disorders found, at 12 months, a fourfold difference in conversion to bipolar spectrum disorder, with 16 percent who received psychoeducation psychotherapy converting compared with 60 percent conversion in those who had not yet received psychoeducational psychotherapy. In another study, Miklowitz et al. (2013) studied 40 high-risk children between 9 and 17 years of age and had similar results with a 12-session family-focused course of therapy. They found that those in the family-focused treatment had more rapid recovery from mood symptoms, more weeks in remission, and more favorable manic symptom trajectories. Miklowitz et al. (2014) also found, in a different study of high-risk 12- to 35-year-olds, greater improvement in attenuated positive symptoms at 6 months. “If you put these three studies together, it suggests that we can potentially alter the staging with early intervention,” said Fristad.

Fristad also mentioned an intervention involving omega 3. Lin and Su (2007) found a significant antidepressant effect of omega 3 in adults with both depression and bipolar depression. In a 12-week randomized controlled trial followed by 40 weeks of follow-up, Amminger et al. (2010) found that the conversion to psychotic disorder was significantly lower in those who received 12 weeks of omega 3—a 5 percent conversion compared to a 27.5 percent conversion. Even 7 years later, in a follow-up that reached almost 90 percent of the 81 participants, they found decreased risk of progression to psychotic disorder, slower conversion times, lower psychiatric morbidity, and lower antipsychotic prescriptions in those who had received the 12 weeks of omega 3. Though these results may seem “too good to be

true,” said Fristad, “possibly treatment occurred during a critical developmental period, preventing changes associated with increases in striatal dopamine. It’s a hypothesis that clearly needs replication.”

Fristad and her colleagues have been conducting trials that use omega 3 plus psychotherapy trials, where children got both interventions, one intervention, or neither. Subjects had a reduction in depressive symptoms when they received the combination of omega 3 plus psychoeducational psychotherapy. The therapy also produced a small but measurable effect for manic symptoms. In addition, the combination of interventions produced decreased depressive symptoms in endogenously depressed children, decreased behavioral symptoms in depressed children, and improved executive functioning in children with mood disorders.

These studies are small and need to be replicated, said Fristad. But they “suggest that there’s something there,” she added. “Low-risk interventions such as psychotherapy or nutritional interventions may alter the progression of illness.”

RECOVERY AFTER AN INITIAL SCHIZOPHRENIA EPISODE

Schizophrenia is a disabling disorder that is characterized by impaired contact with reality, diminished motivations and sense of purpose, and social withdrawal. It usually begins in late adolescence or early adulthood, just as people are launching themselves into independence and adult functioning. Most people in the United States who develop schizophrenia are ill anywhere between 1 and 3 years before treatment is initiated. During that period tremendous disability can accrue. Between 80 and 90 percent of people with schizophrenia are unemployed (Marwaha and Johnson, 2004). In any given year, between 15 and 20 percent of individuals with schizophrenia in the United States are homeless (Folsom et al., 2005), while 15 percent of state prisoners and 24 percent of jail inmates report symptoms that meet criteria for a psychotic disorder (James and Glaze, 2006). Individuals with schizophrenia die anywhere from 8 to 10 years earlier than people in the general population, often from treatable medical conditions such as cardiovascular disease (Druss et al., 2011). In addition to the personal suffering, the burden on family members is high, as are the overall health care costs. In 2005, these were estimated to be $63 billion annually in both direct and indirect costs (Wu et al., 2005).

“Some of these poor outcomes are a consequence of the way that schizophrenia has been treated in the United States,” said Robert Heinssen, director of the Division of Services and Intervention Research at the National Institutes of Mental Health (NIMH). Until recently, treatment generally focused on managing psychotic symptoms and using rehabilitation therapies to try to establish people in settings outside of hospitals. It tended

not to focus on helping people find work or achieve personal goals or reach high levels of independence. But, by the mid-2000s, lessons from Australia, Canada, Denmark, Sweden, and the United Kingdom showed that intervening very close to the onset of psychosis could give people much greater levels of symptomatic recovery and functional capacity. NIMH became interested in seeing whether this early intervention approach could be applied in the community treatment system common in the United States.

In 2008, NIMH launched the Recovery After an Initial Schizophrenia Episode (RAISE) Project, challenging investigators to develop and test interventions, in community settings, to treat first-episode psychosis. NIMH funded two studies both designed to maximize the external validity and utility of their findings. The RAISE Implementation and Evaluation Study (RAISE-IES) was an implementation study conducted with the commissioners of mental health of New York and Maryland as partners. That program studied the barriers to implementing a treatment program for first-episode psychosis and examined strategies that could surmount the barriers and make the intervention delivery feasible.

The RAISE Early Treatment Program (RAISE-ETP) was a national randomized controlled trial involving 34 sites in 21 states. These sites had no prior experience with first-episode psychosis care and no affiliation with academic research institutions, but did have real-world clinicians who were trained to deliver the treatment.

“We learned a lot,” said Heinssen. First, the quality of care in those community treatment settings before people entered the study was worse than was assumed. People had long periods of time where they were not treated (Addington et al., 2015). Second, medications prescribed were not consistent with evidence-based guidelines (Robinson et al., 2015). Finally, very few people had integrated psychiatric and medical care, and they had cardiometabolic health risks associated with premature mortality (Correll et al., 2015).

The RAISE-ETP study evaluated a coordinated specialty care treatment program (NAVIGATE) that combined stage-specific pharmacologic therapy with recovery or resilience oriented or psychotherapy based in cognitive behavioral treatment principles. A family education component engaged family members, and employment and education supports sought to return people to their preferred work or education situations.

The results of the trial were published shortly before the workshop (Kane et al., 2015). Results showed that the experimental intervention was highly engaging. After 1 year, about 80 percent of individuals enrolled in treatment were still in the treatment and, after 18 months, 70 percent were still enrolled, even though some people were beginning to leave the program and move into other treatment settings. This was a much higher level of engagement than in the typical community care condition, Heinssen noted.

The primary outcome measure was quality of life, which is a composite measure that captures symptoms, interpersonal functioning, engagement in community activities, and some important psychological characteristics such as curiosity, motivation, interest, and emotional engagement. Individuals who received NAVIGATE achieved a significantly greater rate of recovery compared with community care. The effect size was modest, 0.31, which Heinssen characterized as a level of improvement that would be noticed by mental health professionals and family members. However, when the duration of untreated psychosis was taken into account, the situation became quite different. People who had a duration of untreated psychosis of less than 18 months showed much greater improvement than people with a longer duration of untreated psychosis. This effect size was 0.54, “something that would be noticed by friends, by teachers, and by the individual themselves,” added Heinssen.

“The bottom line of the study,” said Heinssen, is that “it’s not enough just to offer the right thing; you need to offer the right thing at the right time.” In response to early results from the study, Congress allocated an additional $25 million for first-episode psychosis treatment programs to the Substance Abuse and Mental Health Services Administration (SAMHSA) through the community mental health services block grant. Congress also directed NIMH and SAMHSA to work together to provide guidance to the states that would use the “set-aside” funds to allow this type of treatment to be broadly implemented.

In addition, RAISE-IES, had developed a number of turnkey products, and these resources were made available, at no charge, to state administrators who were planning to use the mental health block grant dollars to support this kind of treatment.

Before the study was conducted, only two states—Oregon and California—were delivering this kind of coordinated specialty care treatment program widely. Following the set-aside mental health block grant program, NIMH is projecting that 32 states and 120 clinics will be offering first-episode psychosis treatment programs, although Heinssen said, “I’m anticipating that we’ll end up with more than 32.” In addition, in October 2015, the Centers for Medicare & Medicaid Services released guidance to state Medicaid directors that endorsed coordinated specialty care, the kind of treatment tested in RAISE, as an evidence-based treatment for first-episode psychosis.

A common estimate for the amount of time it takes for original research to enter into clinical practice is 17 years (Balas and Boren, 2000), Heinssen noted. RAISE took only 7 years from the release of the statement of work to changing practice. “We consider this to be a big win,” he said. “We haven’t solved the whole problem, but we feel we’ve achieved significant traction in a relatively short period, and we’ll be building on that as we go forward.”

IMPLEMENTING COORDINATED SPECIALTY CARE SERVICES IN NEW YORK

Lisa Dixon, professor of psychiatry at Columbia University Medical Center, offered several insights generated by the implementation of the RAISE program in New York State. She was part of the RAISE Connection Program, which was a partnership between the states of New York and Maryland and NIMH. Given the success of the program, the New York State Commissioner of Mental Health found money to invest in the delivery of first-episode services to the citizens of New York. As Dixon said, this was a good example of the kind of experimentation that goes on in states and can provide a model for programs elsewhere.

Early attention was given to the program’s name. Psychosis or schizophrenia are frightening words for people and could scare them away, said Dixon. The program thus became OnTrackNY, which was described as “an innovative treatment program for adolescents and young adults who recently have had unusual thoughts and behaviors or who have started hearing or seeing things that other people don’t. OnTrackNY helps people achieve their goals for school, work, and relationships.”

The care model consisted of a team-based approach with specific evidence-based components, including case management, supported employment and education, psychotherapy, family education and support, pharmacotherapy, and primary care coordination. Core functions of team members included specialized training, community outreach, client and family engagement, mobile outreach, and crisis intervention services.

The promotional material was focused on early identification and early treatment (see Figure 6-1). The program implementers worked with young people and family members to develop some of the outreach material. For clinicians, they sought to frame mental health recovery for young people by asking them to:

• contextualize first-episode psychosis within age-appropriate questioning about a young person’s role in life;
• help clients formulate an understanding of what the problem is and how clinicians can be part of the solution;
• adopt the client’s metaphor or explanation of illness to explore goals;
• reduce stigma;
• emphasize resilience and an active individual recovery journey; and
• provide the same recovery messages to a client’s support network.

A major principle in setting up the system was to start small and expand wisely. To build on existing strengths, they drew on the evidence-

based-practice training center that Dixon was leading. They also developed a leadership group with diverse stakeholders. They connected with families, consumers, clinicians, and payers, which in this case was the state. They also considered the overall needs of the population. Schizophrenia is a relatively high-prevalence but low-incidence condition, with an average of about 10 to 12 new cases per 100,000 per year, said Dixon; “it’s not something that is going to be commonly seen in middle school or high school.” The appearance of just a few new cases every year requires a team-based model to deal with both high-density and low-density population centers.

The program implementers created a pilot to gather experience from four fully funded teams. They did not worry about which services were billable and which were not billable, since some would be covered and others not in the traditional framework. The program initially was limited to the downstate area to capitalize on the population density and cultural variability in that area and also to facilitate training. Four different types of programs were chosen to host the pilot: a state program, a city program, a private nonprofit program, and a hospital-based program, “because we

wanted to see how this would flourish or not in these different settings,” she explained. Included ages were 15 to 30, which helped bridge the adolescent-adult divide.

A particular focus was outreach, “because of course we want to get into people’s homes and into schools in order to get the earliest possible identification and referral,” Dixon said However, research had indicated that at least half the bottlenecks to care occur in the mental health system, so outreach also was focused on the system itself. It sought to serve people within 2 years of onset, whether insured or not insured. The treatment component continued to evolve, since, as Dixon said, “the science is moving forward even as we are implementing it, . . . and we wanted the program to live and breathe as new science occurred.” Outcomes and performance expectations were measured from the beginning.

Of the 223 OnTrackNY enrollees through October 2015, the mean age was 20, and about one-fifth were under age 18. The mean length of time between the onset of psychosis and treatment was about 5 months. It has been a racially and ethnically diverse group, with 48 percent covered by Medicaid and 41 percent having private insurance. The program has produced substantial and consistent reductions in hospitalization and increases in the rates of participation in work and school, according to Dixon.

The success of the approach led to several policy advances, including an increase in the Community Mental Health Block Grant Program by $24.8 million, the allocation of funds for first-episode psychosis programs, and new guidance from NIMH and SAMHSA for states regarding effective programs for first-episode psychosis. New York State received support to enhance the participation of youth, focus on reaching more underserved individuals, and address issues of cultural competence such as enhancing the LGBTQ focus and use of social media. The program also expanded from the downstate area throughout the state.

The program has had challenges in bringing on new sites. One such challenge has been staying in sync with the Medicaid transformation toward managed care in New York State. The treatment model also has continued to evolve, with a particular focus on peer support. The program has devoted attention to transitions, follow-up, and community outreach. Major questions have included how many people can be served with a limited staff, how long the program should last, and what should happen next.

“We have benefited from the RAISE initiative,” concluded Dixon. “The time is right, given the science and given the expertise in implementation, to expand and sustain resources for individuals with first-episode psychosis.”

An interesting conversation arose in the discussion period about insurance coverage for OnTrackNY enrollees. Medicaid covers the program, but private insurance does not always provide coverage. Dixon said that information is being gathered for those enrollees who are being covered by

private insurance, and this information is being compiled for presentation to other insurers to “try to get them on board.” In addition, in New York State, most Medicaid managed care insurers have both public and private products, which could help coverage crossover.

Heinssen pointed out that when the Centers for Medicare & Medicaid Services (CMS) endorsed this as an evidence-based treatment, it created opportunities for CMS to discuss the treatment with private insurers. “CMS is the 800-pound gorilla in the room,” he observed. “If they say, ‘We’re going to do it,’ it makes it harder not to go forward on the private side.” Keeping children on their parents’ policy until age 25 and the preexisting conditions provisions in the Affordable Care Act also work in the direction of greater buy-in, he said.

A MODEL FOR CHILDREN INVOLVED IN BOTH CHILD WELFARE AND JUVENILE JUSTICE

In a population of young people studied by Herz (2014), 10 to 29 percent of youth ages 8 and older in child welfare were subsequently arrested. Similarly, among juvenile justice referrals, two-thirds had some sort of child welfare history. Research has long indicated that this crossover population is more likely to suffer from trauma and adverse childhood experiences, said Shay Bilchik, founder and director of the Center for Juvenile Justice Reform at Georgetown University’s McCourt School of Public Policy. But only recently has it become clear that members of this population are often retraumatized by experiences with the child welfare and juvenile justice systems. “We need to think more systemically about how we pull all this together,” said Bilchik. “There needs to be a very targeted conversation [about] what our research tells us about effective interventions.”

Bilchik cited five factors that shape the experiences of this “dually involved” population with the child welfare system: (1) the type of child welfare placement [25% of the children who crossover live in group homes], (2) placement instability, (3) persistent or only in adolescence maltreatment, (4) the absence of positive attachments, and (5) education instability. They also tend to have academic and behavioral problems at school; high rates of mental health and substance abuse problems; and families with a history of criminal behavior, mental health, and/or substance abuse problems. Research points to “the hopelessness that this population faces, and their families struggle with, including the depression that can mount from that,” he said.

The model he and his colleagues have developed sought to bring these systems together in different ways. The core elements of the model are

• identification
• equitable treatment
• family teaming
• information sharing
• coordinated case assessment, planning, and management
• evidence-based services
• trauma-informed care
• judicial administration
• permanency

The key implementation factors focus on family teaming, coordination, and permanency, said Bilchik. For example, the child welfare and juvenile justice systems often do not know that children are involved with both systems, let alone the underlying behavioral health issues—substance abuse, mental health, or educational deficits—a child might have. Family teaming is designed to bring people together around children in a holistic way to help them and their families navigate the systems they encounter and achieve better outcomes. Information sharing makes it possible to share information across systems and, when done well, build trust that the information will not be misused. Coordination of assessment, planning, and management can lead to the use of evidence-based strategies and trauma-informed care. He queried, “How does the court system integrate itself so we’re not seeing families docketed in one system on Monday and another system on Thursday, where one judge is in tune with the behavioral health issues but another is looking at punitive accountability and sanctions?” Finally, permanency implies sustained relationships and support for young people and families that last beyond a program or system intervention.

The model they are using seeks to reduce juvenile justice penetration, the unnecessary use of preadjudication detention, the rate of recidivism, and re-entering the child welfare system from the juvenile justice system, noted Bilchik. To accomplish these goals, the model seeks to increase information sharing, the family voice in decision making, family and youth engagement, joint assessment and case planning, coordinated case management, behavioral health treatment, presocial bonds, and diversion.

The outcomes of this approach are “startlingly good,” said Bilchik. “We see systems changing behavior, setting up new policies and practices that they then train their staff and practitioners around, and developing performance and quality assurance measures to make sure they’re actually doing what they said they would do.”

As Bilchik said in response to a question, “If the families are not there, if the families are not centrally involved, you’re not going to end up being successful.” Distrust that has been built up in families over time needs to

be overcome. In the same way, the workforce needs to be respectful of the voices of families.

SYSTEMIC IMPROVEMENT

During the discussion period, a topic that arose was how to support a variety of initiatives in a variety of places as the research evidence becomes available to justify particular approaches. Heinssen pointed out that NIMH is following up on the findings he described in areas that indicate the potential for greater improvement. For example, NIMH has funded eight additional studies that are looking for practical strategies for reducing the duration of untreated psychosis. Besides identifying problems and doing research to solve them, NIMH is “keeping the engagement between the science and policy makers who are already engaged in the problem,” he added. NIMH has channeled information on the results of its studies to a number of public and private organizations. “The way we’re going to keep the momentum going is by continuing to add to the knowledge base and feeding the knowledge back to the policy making process,” Heinssen said.

Dixon added that funding can be structured to apply resources efficiently in a community over time. However, she also warned about funding individual disorders and not thinking more carefully about the overall needs of entire populations.

Bilchik returned to the importance of the school system. Educators need to be at the table, he said, so that they can team up with people from other systems and identify the needs of children rather than pushing those children away. Children need mental health services, but they also need “a level playing field” in the educational environment, he stated. Schools could pull back from extreme suspension and expulsion policies if they understood more about the context for a child’s behavior, he noted. Other agencies also could help create a safety net in the school environment to support children so they can be successful. In this way, education could become a key element of a broader case plan to support children.