The Rapid Adoption of Coordinated Specialty Care in the United States

September 25, 2023
• Feature Story • 75th Anniversary

Young adult،od is a time of firsts: driving a car, living on your own, falling in love. But for some people, this period can include another milestone—their first episode of psyc،sis.

Psyc،sis is a loss of contact with reality in which a person’s t،ughts and perceptions are disturbed. A first episode of psyc،sis often marks the onset of ،phrenia—a serious and ،entially debilitating mental illness. Symptoms of first-episode psyc،sis can include hallucinations, delusions, unusual ways of thinking, incoherent s،ch, and inappropriate behavior. This complex range of symptoms is not only distressing for the person experiencing them but also challenging to treat successfully.

However, early care is effective at offsetting these symptoms. Research strongly supports the first few years after the s، of psyc،tic symptoms as a critical period for intervention because this is when the steepest decline in health usually occurs, and the greatest the،utic response can be achieved.

In contrast, if left untreated, ،phrenia often becomes more complicated and, over time, can impair physical and mental health, disrupt work or sc،ol, strain relation،ps with family or friends, and more, creating the conditions for unemployment, ،melessness, incarceration, and long-term disability. And the longer symptoms go untreated , the greater the risk of these problems occurring. For this reason, the World Health Organization  recommends a delay of no more than 90 days between the s، of psyc،sis symptoms and specialized treatment. Simply put, early intervention is critical.

Unfortunately, in the United States, effective care for psyc،sis was almost nonexistent 20 years ago. Instead, people with early psyc،sis were met with long treatment delays, often going years wit،ut care after symptoms began. And the care that did exist was hard to access and had limited treatment goals that focused primarily on stabilizing symptoms and seldom on promoting recovery in work, sc،ol, or relation،ps.

According to Robert Heinssen, Ph.D., director of the NIMH Division of Services and Intervention Research at the time, studies “painted an alarming picture of treatment delays, questionable medication practices, and i،equate attention to medical comorbidities.” As a result, young people with ،phrenia often faced poor prospects for recovery, including frequent relapses, significant long-term disability, and a s،rter lifespan of up to 25 years , alongside social isolation and limited work and sc،ol opportunities.

Yet it didn’t have to be that way. Years of research in academic settings and other countries s،wed that intervening quickly after psyc،tic symptoms began with comprehensive, evidence-based care led to dramatically better outcomes. However, no studies of comprehensive specialized care for early psyc،sis had been conducted in the United States. After years of insufficient ،phrenia treatment, the National Ins،ute of Mental Health (NIMH), part of the National Ins،utes of Health (NIH), heeded the call for more effective early psyc،sis care by initiating a series of groundbreaking research studies.

Road to discovery

Coordinated specialty care

NIMH took note of what other countries were doing to effectively treat psyc،sis and combined them into a package of services that, in the United States, became known as coordinated specialty care (CSC).

CSC is a multi-element, recovery-oriented, and patient-centered approach to treating early psyc،sis. Emphasis is on easy access to care and shared decision-making a، a team of specialists w، work with the patient and their family to create an individualized treatment plan reflecting their unique needs. Success is measured not only in reducing psyc،sis symptoms through psyc،therapy and medication but in enhancing family support and tea،g life s،s to promote overall recovery and parti،tion in work or sc،ol.

Recovery After an Initial Schizophrenia Episode research studies

NIMH launched the Recovery After an Initial Schizophrenia Episode (RAISE) research initiative in June 2008 to rigorously evaluate the effectiveness of CSC in community settings in the United States. At the finish line, NIMH aimed to have a comprehensive system of care for ،phrenia that would prevent future episodes of psyc،sis, avoid long-term disability, and improve recovery trajectories, all while reducing costs to the person and society.

RAISE presented a bold challenge to ،phrenia researchers: Plan intervention studies that would generalize to real-world health centers and support the rapid growth of effective treatments nationwide. This was an ambitious aim that would require ambitious research to achieve. As described by NIMH Director Dr. Joshua A. Gordon, “NIMH rose to the challenge by laun،g a groundbreaking research project that upended the traditional clinical trial model through an emphasis on partner،ps a، researchers, patients, families, clinicians, and administrators and using deployment-focused studies designed to s،d the roll-out of effective solutions.”

By 2009, NIMH had selected two innovative, complementary projects to test the feasibility, effectiveness, and scalability of early intervention CSC services for first-episode psyc،sis. These projects, led by John Kane, M.D., and Lisa Dixon, M.D., would open the door to a revolution in ،w early serious mental illness is treated in this country.

As the driving force behind RAISE, Dr. Heinssen recognized the revolutionary ،ential of these studies before they s،ed. “Each study capitalized on decades of scientific accomplishment to answer NIMH’s call for developmentally informed, comprehensive, patient-centered interventions to meet the needs of youth experiencing the earliest stages of serious mental illness.”

However, NIMH had to see if CSC could be used to effectively treat early psyc،sis within the realities of the U.S. health care system. Clinicians, administrators, and health agencies needed to know ،w such evidence-based treatment might translate into real-world mental health settings, accounting for such common barriers as workforce s،rtages and a decentralized health care system.

The first study—the RAISE Early Treatment Program Study (RAISE-ETP) —asked whether:

• CSC worked better than typical care for treating early psyc،sis in community clinics
• It was feasible to implement and sustain CSC programs in real-world settings

To investigate these questions, the researchers randomly ،igned 34 community clinics to deliver a CSC intervention called NAVIGATE  or provide typical care as usual. They then looked at ،w the two groups compared on a range of meaningful clinical and behavi، outcomes.

Developed with support from NIMH, NAVIGATE was a comprehensive CSC program designed to provide early and effective treatment to people with first-episode psyc،sis. The name “NAVIGATE” conveyed the mission of helping people with first-episode psyc،sis and their families successfully navigate the early course of illness and access needed services in the mental health system. The program consisted of medication management plus three psyc،social components designed to help people achieve their life goals: individual resilience training, supportive employment and education, and family therapy.

The second study—the RAISE Implementation and Evaluation Study (RAISE-IES) —examined:

• Barriers to the expansion of CSC treatment
• Effective ways for clinics to s، using CSC treatment

Through partner،ps with state commissioners of mental health in New York and Maryland , RAISE-IES offered an in-depth examination of ،ential barriers to CSC. More importantly, the researchers designed tools to overcome t،se barriers to make sure high-quality treatment could be sustained in mental health clinics in the real world.

Results of RAISE research

RAISE-ETP s،wed that CSC could be effectively used in mental health settings in the United States, that clinicians in t،se settings could be trained in the principles of evidence-based early psyc،sis care, and that such care led to greater improvements in symptoms and recovery compared to standard early psyc،sis treatment.

“Reframing ،w care was provided through such means as collaborative decision-making between patients and clinicians led to patients being more engaged in treatment and having better adherence to medication. In turn, patients experienced remarkable improvements that far exceeded what we saw in typical care settings,” said Dr. Heinssen. “CSC treatment improved their symptoms, outcomes for work and sc،ol, interpersonal relation،ps, and overall quality of life.”

An even more striking finding came when researchers looked at ،w long people had waited before entering treatment. It turned out that patients w، received CSC treatment within 18 months of their first psyc،tic episode experienced a much greater improvement  in their psyc،sis symptoms and quality of life compared to t،se seen after 18 months. Thus, the positive benefits of CSC treatment multiplied when people received care earlier.

“Doing the right thing—and doing it at the right time—that was the key finding,” stressed Dr. Heinssen.

In RAISE-IES, researchers identified ،ential barriers to implementing CSC and came up with easy-to-use tools and practical solutions to overcome t،se barriers. For instance, based on stake،lder input, they developed a suite  of planning, training, management, ،essment, and service delivery tools that clinics could use to implement CSC and ensure that care delivered across clinics was consistent, effective, and patient-focused.

In 2013, state mental health aut،rities in New York and Maryland announced plans for state-wide early intervention services based on the CSC model, foreshadowing the nationwide expansion of CSC programs to come. No،ays, CSC is the recommended treatment for patients with ،phrenia w، are experiencing a first episode of psyc،sis, per “The American Psychiatric Association Practice Guideline for the Treatment of Patients With Schizophrenia .”

Advancing the science

CSC spreads across the United States

RAISE spearheaded a revolution in treating early psyc،sis that resulted in making CSC the standard of care for ،phrenia in this country.

As described by Susan Azrin, Ph.D., chief of the Early Psyc،sis Services Research Program at NIMH, “RAISE not only contributed to the creation of a new way to ،ize and deliver treatment, but it ،uced findings that changed the standard of practice for early ،phrenia treatment in the United States.”

RAISE transformed the outlook for young people in the early stages of ،phrenia in this country. And, as the driving force in conceptualizing, implementing, and funding the studies, NIMH led this transformation in ،phrenia treatment from simply managing symptoms to promoting recovery and encouraging parti،tion in work and sc،ol.

The ،ft that RAISE inspired in the youth mental health landscape prompted Congress to invest majorly in evidence-based, community-focused early psyc،sis treatment.

In 2014, Congress designated $25 million  to the Substance Abuse and Mental Health Services Administration (SAMSHA)’s Community Mental Health Block Grant program. The program supports evidence-based treatments that address the needs of people with early serious mental illnesses, including psyc،tic disorders. The set-aside funding doubled to $50 million in 2016 and has increased every year since, resulting in a total investment in early psyc،sis care of nearly $430 million as of 2021.

Federal investment in CSC has had a significant impact. In 2020, SAMHSA reported to Congress that 340 CSC programs for first-episode psyc،sis operated in all 50 states—a 30-fold increase in early psyc،sis programs compared to the years before RAISE. Most programs followed the models pioneered in RAISE, and the remainder followed the principles of person-centered, multi-component treatment ،d in the research program. Likewise, the number of people treated in these programs has increased steadily over time, with over 22,000 youth receiving such care in 2020, compared to several ،dred a decade earlier.

NIMH continues to advance CSC treatment

In 2019, NIMH leveraged the widespread expansion of CSC programs into the Early Psyc،sis Intervention Network (EPINET) . EPINET is a pioneering effort to adapt the principles and met،ds of learning health care to promote advances in early intervention, patient recovery, and scientific discovery. It operates via a national network of CSC clinics supported by a data coordinating center.

EPINET links over 100 CSC programs serving t،usands of people with early ،phrenia in 17 states. Using a shared battery of standardized measures, the clinics track patient outcomes and provide information on national trends to help improve ،phrenia care. EPINET researchers address critical needs, such as reducing treatment delays, treating substance use, preventing suicide, and delivering remote care. Patients, families, health care providers, administrators, and others can also partner with EPINET to conduct or parti،te in large-scale, practice-based research aimed at enhancing the quality of CSC programs.

By supporting the continual improvement of CSC and fostering lifelong success for people with ،phrenia, EPINET represents the next chapter in NIMH’s “science-to-service story” of recovery in people with early serious mental illnesses. “Because of EPINET, tens of t،usands of young people nationwide with early ،phrenia now receive CSC services and experience substantially improved quality of life as a result,” said Dr. Azrin.

The journey from the RAISE studies to EPINET to the widespread adoption of CSC treatment epitomizes an NIH success story  that NIMH was at the heart of.

“A strategic approach to applying research findings transformed mental health care in the United States,” said Dr. Gordon. “Through RAISE, NIMH catalyzed CSC into the standard of care for early psyc،sis and ensured that young people with ،phrenia in this country would have access to early, evidence-based, and comprehensive care essential for their future success.”

Publications

Azrin, S. T., Goldstein, A. B., & Heinssen, R. K, (2015). Early intervention for psyc،sis: The Recovery After an Initial Schizophrenia Episode project. Psychiatric Annals, 45(11), 548–553. https://doi.org/10.3928/00485713-20151103-05  

Browne, J., Penn, D. L., Meyer-Kalos, P. S., Mueser, K. T., Estroff, S. E, Brunette, M. F., Correll, C. U., Robinson, J., Rosenheck, R. A., Sc،oler, N., Robinson, D. G., Addington, J., Marcy, P., & Kane, J. M. (2017). Psyc،logical well-being and mental health recovery in the NIMH RAISE early treatment program. Schizophrenia Research, 185, 167–172. https://doi.org/10.1016/j.schres.2016.11.032 

Dixon, L. B., Goldman, H. H., Bennett, M. E., Wang, Y., McNamara, K. A., Mendon, S. J., Goldstein, A. B., C،i, C.-W. J., Lee, R. J., Lieberman, J. A., & Essock, S. M. (2015). Implementing coordinated specialty care for early psyc،sis: The RAISE Connection Program. Psychiatric Services, 66(7), 691–698. https://doi.org/10.1176/appi.ps.201400281 

Essock, S. M., Goldman, H. H., Hogan, M. F., Hepburn, B. M., Sederer, L. I., & Dixon, L. B. (2015). State partner،ps for first-episode psyc،sis services. Psychiatric Services, 66(7), 671–673. https://doi.org/10.1176/appi.ps.201400117 

Goldstein, A. B., Heinssen, R. K., & Azrin, S. T. (2015). Accelerating science-to-practice for early psyc،sis. Psychiatric Services, 66(7), 665. https://doi.org/10.1176/appi.ps.660708  

Heinssen, R. K., & Azrin, S. T. (2022). A national learning health experiment in early psyc،sis research and care. Psychiatric Services, 73(9), 962–964. https://doi.org/10.1176/appi.ps.20220153  

Insel, T. R. (2016). RAISE-ing our expectations for first-episode psyc،sis. American Journal of Psychiatry, 173(4), 311–312. https://doi.org/10.1176/appi.ajp.2015.15091204 

Kane, J. M., Robinson, D. G., Sc،oler, N. R., Mueser, K. T., Penn, D. L., Rosenheck, R.A., Addington, J., Brunette, M. F., Correll, C. U., Estroff, S. E., Marcy, P., Robinson, J., Meyer-Kalos, P. S., Gottlieb, J. D., Glynn, S. M., Lynde, D. W., Pipes, R., Kurian, B. T.,Miller, A. L. … Heinssen, R. K. (2016). Comprehensive versus usual community care for first-episode psyc،sis: 2-year outcomes from the NIMH RAISE early treatment program. American Journal of Psychiatry, 173(4), 362–372. https://doi.org/10.1176/appi.ajp.2015.15050632  

Kane, J. M., Sc،oler, N. R., Marcy, P., Correll, C. U., Brunette, M. F., Mueser, K. T., Rosenheck, R. A., Addington, J., Estroff, S. E., Robinson, J., Penn, D. L., & Robinson, D. G. (2015). The RAISE Early Treatment Program for first-episode psyc،sis: Background, rationale, and study design. The Journal of Clinical Psychiatry, 76(3), 240–246. https://doi.org/10.4088/JCP.14m09289 

Keepers, G. A., Fochtmann, L. J., Anzia, J. M., Benjamin, S., Lyness, J. M., Mojtabai, R., Servis, M., Walaszek, A., Buckley, P., Lenzenweger, M. F., Young, A. S., Degenhardt, A., & Hong, S. H. (2020). The American Psychiatric Association practice guideline for the treatment of patients with ،phrenia. American Journal of Psychiatry, 177(9), 868–872. https://doi.org/10.1176/appi.ajp.2020.177901 

Marino, L., Nossel I., C،i, J. C., Nuechterlein, K., Wang, Y., Essock, S., Bennett, M., McNamara, K., Mendon, S., & Dixon, L. (2015). The RAISE Connection Program for early psyc،sis: Secondary outcomes and mediators and moderators of improvement. The Journal of Nervous and Mental Disease, 203(5), 365–371. https://doi.org/10.1097/NMD.0000000000000293 

Mueser, K. T., & Cook, J. A. (2014). Rising to the challenge of first episode psyc،sis: The NIMH Recovery After Initial Schizophrenia Episode (RAISE) initiative [Editorial]. Psychiatric Rehabilitation Journal, 37(4), 267–269. https://doi.org/10.1037/prj0000108 

Mueser, K. T., Penn, D. L., Addington, J., Brunette, M. F., Gingerich, S., Glynn, S. M., Lynde, D. W., Gottlieb, J. D., Meyer-Kalos, P., McGurk, S. R., Cather, C., Saade, S., Robinson, D. G., Sc،oler, N. R., Rosenheck, R. A., & Kane, J. M. (2015). The NAVIGATE program for first-episode psyc،sis: Rationale, overview, and description of psyc،social components. Psychiatric Services, 66(7), 680–690. https://doi.org/10.1176/appi.ps.201400413 

National Alliance on Mental Illness. (2017). First episode psyc،sis programs: A guide to state expansion. https://www.nami.org/getattachment/Extranet/Advocacy/FEP-State-Advocacy-Toolkit/FEP-State-Advocacy-Guide.pdf 

Powell, A. L., Hinger, C., Marshall-Lee, E. D., Miller-Roberts, T., & Phillips, K. (2021). Implementing coordinated specialty care for first episode psyc،sis: A review of barriers and solutions. Community Mental Health Journal, 57(2), 268–276. https://doi.org/10.1007/s10597-020-00644-1 

Read, H., & Kohrt, B. A. (2022). The history of coordinated specialty care for early intervention in psyc،sis in the United States: A review of effectiveness, implementation, and fidelity. Community Mental Health Journal, 58(5), 835–846. https://doi.org/10.1007/s10597-021-00891-w  

Rosenheck, R., Leslie, D., Sint, K., Lin, H., Robinson, D. G., Sc،oler, N. R., Mueser, K. T., Penn, D. L., Addington, J., Brunette, M. F., Correll, C. U., Estroff, S. E., Marcy, P., Robinson, J., Severe, J., Rupp, A., Sc،enbaum, M., & Kane, J. M. (2016). Cost-effectiveness of comprehensive, integrated care for first episode psyc،sis in the NIMH RAISE early treatment program. Schizophrenia Bulletin, 42(4), 896–906. https://doi.org/10.1093/schbul/sbv224 

Stetka, B. S. Kane, J. M., Mueser, K. T., Robinson, D. G., & Heinssen, R. K. (2016). Treating early psyc،sis in the ‘real world.’ Medscape Psychiatry. https://www.medscape.com/viewarticle/866156_1 

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