Special Report: What Is ‘Coordinated Specialty Care,’ and Why Is It Effective?
Abstract
Early intervention programs for people with psychosis or at high risk of psychosis have expanded rapidly. Coordinated Specialty Care is one model of care that has proven to be effective in reducing symptoms and improving patients’ quality of life.
Over the last 15 years, the United States has seen a growing awareness of the importance of identifying individuals with early psychosis so that they can receive interventions at the earliest opportunity. In this column, we will discuss the growth of early intervention for psychosis programs in the United States, provide an overview of the Coordinated Specialty Care (CSC) treatment model, and describe some of the components of CSC programs, including cognitive-behavioral therapy for psychosis (CBTp), shared decision-making, and lifestyle interventions.
Duration of Untreated Psychosis
Psychosis occurs along a continuum, and interventions differ depending on where on that continuum an individual lies. Individuals at risk for psychosis but not yet exhibiting clinical symptoms may benefit from interventions such as CBTp that can delay or potentially prevent progression to full psychosis. Once first-episode psychosis occurs, individuals benefit from targeted interventions that address the symptoms of psychosis and minimize the risk of relapse.
Historically, individuals experiencing first-episode psychosis encountered delays in care because of a reluctance to diagnose patients and appropriately address their symptoms. However, studies have demonstrated that these delays lead to more serious symptoms, poor functioning outcomes, and a decreased chance of psychosis remission. In the United States, the median duration of untreated psychosis (DUP) was nearly 18 months in the early 2010s, which means that it took individuals, on average, over 18 months to access appropriate, and much needed, treatment. This contrasts with the internationally recommended standard of a DUP that is no greater than three months and much longer than the two-week standard for access to treatment from the point of referral in England.
Recognition of the link between DUP and patient outcomes has led to the establishment of early intervention in psychosis services. In the United States these services are termed Coordinated Specialty Care (CSC), which includes a range of evidence-based interventions offered within a recovery-oriented and shared decision-making framework.
Expansion of CSC Clinics
The most effective treatments for people who experience a first episode of psychosis have long been known to be multimodal and interdisciplinary. To best identify the suite of services that should be included in treatment, in 2008 the National Institute of Mental Health (NIMH) launched the Recovery After Initial Schizophrenia Episode (RAISE) research project, collecting data from numerous community and academic sites to test a team-based treatment program known as NAVIGATE and compare it with regular community care. NAVIGATE included interventions such as patient and family education, employment programs, and personalized medication treatment that today form the backbone of the CSC model. The results of RAISE demonstrated that people who received CSC services had a better quality of life, more social and occupational success, and better ratings on symptoms. The success of this intervention has led to a growth of CSC clinics throughout this country.
Thanks to the success of RAISE, CSC clinics have expanded rapidly—from 12 in 2008 to over 160 across all 50 states and several U.S. territories. Other countries have also focused on early intervention, particularly Australia and England. The organization Early Intervention in Mental Health (IEPA) lists resources around the world that seek to provide comprehensive services for people at this stage of illness. (Comparing the effectiveness of programs in these countries with those in this country is difficult because the payment mechanisms differ, impacting the services that patients receive.)
The increased distribution of CSC clinics across the United States has increased access to care and should help reduce the length of time it takes to get care. With the rapid rise in program development for early psychosis, however, many struggle to provide all CSC core services.
Clinical services are based on local resources, which vary by CSC settings—public vs. private, academic vs. community. The varying protocols have also spurred debate around what are the most essential features of the CSC program.
The core components of a CSC clinic are as follows (in no particular order):
Shared decision-making framework
Medication management
Psychotherapy (typically group and/or individual CBTp)
Case management
Family education and support
Peer support
Supported employment and education
Each area is led by a designated team leader who helps to coordinate the overall program and guide the team’s functioning and consultation on how best to manage the patients in the program.
About the Artist: Michael Unsinger
The painting at the beginning of this special report was made by artist Michael Unsinger. It is titled “The Wave” and is painted with traditional acrylics on a 6 inch x 6 inch wood panel.
Mr. Unsinger was diagnosed with bipolar schizoaffective disorder at age 23, and after spending the better part of a year in psychiatric wards, he has not been hospitalized since. “The surreal scenes I paint describe how everyday life feels with schizoaffective disorder, bipolar type. Painting brings me peace of mind and quiets my chaotic internal world,” he told Psychiatric News.
The painting is inspired by Hokusai’s “The Great Wave off Kanagawa,” which depicts a rogue wave overtaking three boats. “Sometimes mental health journeys feel this way,” he said.
The figures in the boat stand for manic and depressed states of mind. The diver in antique brass is a symbol for feeling low; the diver is so accustomed to the crushing pressure of ocean water that the shoreline seems like a distant memory. The astronaut is a symbol for feeling so limitless that nothing is out of reach. The paper boat is a symbol for a safe state of mind—while at times it may be fragile, with a skillful captain, it is unsinkable.
“Without CBT/reality checking, I would be in an institution,” Mr. Unsinger said. “Without my psychiatrist, I would still be in a loop of mental anguish that I could easily compare to descriptions of hell. I am beyond thankful for the tools that were imparted to me to keep my little paper boat sailing. To the health care providers who step above and beyond to make a difference, you are appreciated. I am absolutely more than just a diagnosis on a piece of paper; I am a future you helped make possible by being there. I am a life you saved.”
Additional works of Mr. Unsinger can be viewed here.
Though the judicious use of antipsychotics and other medications is a key component of CSC care, the model emphasizes psychosocial interventions—psychotherapies, education, support, and skills building—to promote recovery.
Within CSC programs, CBTp is one of the most used modalities of psychotherapy. Initially developed by Aaron Beck, M.D., who published the first case study on cognitive therapy for paranoid schizophrenia in the 1950s, CBTp was not widely implemented until many decades later. Because of a strong focus on biological interventions for psychosis (especially in the 1950s, when the first effective antipsychotic medications were being developed) and because of stigmatizing and inaccurate beliefs about psychosis (for example, that psychotic experiences were so far outside of the realm of “normal” functioning that therapy could not be helpful), this treatment modality was largely overlooked until the 1980s and 1990s. The United Kingdom, Australia, and Canada, among others, were much quicker to integrate effective psychosocial interventions into routine treatment for individuals with psychosis. Fortunately, the United States is beginning to catch up, thanks in large part to the growth of CSC clinics.
In the past 20 years, at least 75 randomized, controlled trials have looked at the impact of CBTp, and CBTp is now recognized as a first-line intervention for individuals with psychosis, as well as for those who are at high risk for experiencing psychosis. CBTp has been found effective in reducing positive symptoms, negative symptoms, and general symptoms of psychosis. For individuals at high risk for developing psychosis, CBTp has been found to reduce rates of transition to psychosis, as well as reducing symptoms of attenuated psychosis. While most work in this area has looked at CBTp as a treatment provided alongside antipsychotic medication, recent work has found that CBTp is beneficial even in the absence of antipsychotic medication.
The most recent practice guideline for treatment of patients with schizophrenia by APA as well as the Schizophrenia Patient Outcomes Research Team (PORT) include CBT in its schizophrenia treatment guidelines.
How Does CBTp Work?
In CBTp, the therapist and client work together to better understand maladaptive patterns of thoughts and behaviors and to identify specific areas for intervention. Interventions typically focus on strategies for improving functioning and reducing distress. It is important to note that increased functioning and reduced distress can occur regardless of whether specific symptoms (such as delusions or auditory hallucinations) are still present. There can be a great deal of flexibility in identifying the most effective interventions, based on how the case is formulated.
For example, if a patient who is experiencing auditory hallucinations believes she is hearing the voice of the devil predicting her imminent death, there are many opportunities to intervene in ways that can reduce distress and increase functioning. Using an approach that is collaborative, genuine, and curious, cognitive interventions might focus on exploring the belief that the voice is the devil or that what the voice predicts is accurate (“Has the voice ever told you things in the past that have not come true?” “Do you have any other thoughts about what might be causing you to hear this voice?”). Behavioral interventions might involve targeting isolative behavior resulting from the interpretation of the auditory hallucination (such as avoiding social interactions or barricading herself in her room), encouraging behavioral activation, practicing distraction from the distressing voice by engaging in pleasant activities, and/or collaboratively developing behavioral experiments to test out the veracity of her distressing beliefs. Meta-cognitive approaches could involve taking an acceptance-based approach to observing distressing thoughts and distressing voices without engaging in them or shifting the focus of attention.
Lifestyle Interventions for Psychosis
As a multimodal strategy, CSC should ideally manage patients’ physical and emotional health in addition to their mental health. Physical exercise, healthy nutrition, mindfulness, social relationships, regular sleep, and avoiding substance use have all demonstrated benefits in the management of psychosis and should be incorporated in a CSC program.
Case Example: Andrew
Andrew is a 19-year-old, heterosexual, cisgender Caucasian man who is completing his first year at community college while also working part time at a local coffee shop. Andrew lives with his mother and younger sister. He recently lost his job for failing to show up for several shifts. He has become increasingly withdrawn from family and friends, his grades have been slipping at school, and he was just notified that he is in danger of failing out of his program. Additionally, his mother and sister have observed strange behavior, which include hearing him speaking out loud when he is alone in his room. When questioned about this, Andrew tells his family that he can hear his boss and former co-workers conspiring against him, and he is defending himself. Andrew begins accusing his former boss of spying on him and hacking into his computer.
Initially Andrew accesses support through his college counseling center and reports feeling “stressed.” During the initial assessment, the counselor becomes concerned when Andrew reports that the source of his stress is related to this boss, whom he accuses of spying on him and “communicating with me 24/7.” The counselor refers Andrew to the county Coordinated Specialty Care program.
Following an initial assessment of symptoms, he is found to meet criteria for its first-episode psychosis program. Although initially reluctant to engage in many of the services provided, he does go on several outings with the peer specialist and learns more about the program. The peer specialist shares some aspects of his recovery journey, which helps Andrew feel more hopeful about his own future.
Over time, he agrees to a meeting with the psychiatrist to learn about treatment options including medication, supplements, and physical exercise. He begins to meet with the psychologist on the team for individual cognitive-behavioral therapy for psychosis (CBTp), during which he identifies some goals (being able to return to work and school) for treatment. Because paranoid ideation about being targeted or sabotaged by his former employer is the biggest barrier to his working or studying, coping skills for managing worry and paranoia are a primary focus of CBTp treatment.
Andrew learns skills to manage his worry and help him check out the accuracy of some of the beliefs that lead to worry. Andrew also works with the team-supported employment and education specialist to identify specific skills for managing school and requesting appropriate accommodations from his college. They also have discussed trying supported employment when he feels ready to work again.
After his first year in the program, Andrew feels he is returning to his baseline. His symptoms are much better managed on the medications he is taking, and when he does experience thoughts that lead to paranoia, he feels quite confident in his ability to use his CBT skills to assess these thoughts and manage the worry that comes up. Andrew links the symptoms he experienced to feeling overwhelmed at college and is committed to finding ways to make returning to school possible while also managing the associated stressors.
He finally returns to school on a reduced course load, so that he also has time to focus on his own wellness and recovery. Andrew has also started working four hours a week at a local clubhouse, where he helps prepare some meals. In addition to medication management and therapy, the team coaches him on making sure he makes time for daily exercise, mindfulness practice, and social connection.
For example, physical exercise upregulates release of neurotrophic factors after single sessions and stimulates epigenetic changes that lead to enhanced transcription in response to sustained exercise patterns. This leads to enhanced synaptic plasticity, increased regional brain volumes, and improved cognitive function. Mood and negative and cognitive symptoms improve in response to single sessions of exercise while improvements in psychosis are associated with sustained exercise. When clinicians use a patient, iterative, goal-setting, and monitoring approach, many individuals with psychosis are able to benefit from progressive lifestyle change that supports their brain health and recovery process.
Shared Decision-Making Integral to CSC
Shared decision-making is a key philosophy of the CSC model, meaning that psychiatrists work collaboratively with young people and their families to make treatment decisions. When considering treatment approaches, the psychiatrist and patient together consider evidence-based recommendations, pros and cons of various interventions, and the patient’s preference. This team-based approach allows decisions to be fully informed by both the psychiatrists’ expertise in diagnosis, prognosis, and treatment and the patient’s expertise in his or her own lived experience, social/cultural context, and value system. Studies show that a shared decision-making approach is associated with better outcomes, increased adherence with treatment recommendations, and reduced stigma.
What’s Next for Early Intervention?
Recently both state and federal funding has been allocated to support continued development of CSC. However, this funding commitment raises additional questions for CSC growth and implementation. As CSC programs continue to be developed across the United States, there is increasing need to create sustainable workforce development plans. Community agencies frequently struggle with staff turnover, and this turnover is a significant barrier to sustainable implementation of CSC in community settings. Supporting training in early intervention in psychosis in medical school and graduate programs could support workforce development and foster a future generation of clinicians passionate about this work.
In addition, there is a need to address a lack of diversity within the early psychosis workforce and leadership. The workforce (including leaders in early psychosis research, service development, and policy development) needs to better represent the patients and communities served. Diversity efforts should focus on both demographic diversity (race, gender, culture, etc.) as well as professional diversity (educational background, workplace seniority, etc.) to ensure that all voices are represented at multiple levels of this work.
Critically, CSC programs must include the perspectives of individuals with lived experience of psychosis, both when providing patient services and when conducting clinical research. This helps ensure that we are asking the right questions and providing the services that matter to individuals who are experiencing psychosis. Lived-experience inclusion also helps to reduce stigma. In addition, stakeholder advisory councils should be created that include patients and/or family members, and peer specialists should be included in treatment teams.
While steps have been taken to support the inclusion of people with lived experience in these ways, there is more work to be done. Too often, individuals with lived experience are involved in a way that can be superficial or tokenistic (for example, having an individual with lived experience on a research team but not empowered to participate meaningfully; building an advisory council but not taking steps to integrate feedback from the advisory council into clinical practice). Moving forward, we must advocate for inclusion of individuals with lived experience in meaningful and substantive ways in every aspect of research development and clinical service delivery.
Further expansion of CSC also raises the question of best practices for implementing these models in rural and frontier settings. There is a recognized need to adapt CSC based on geographical area, but there are limited data to support this adaptation.
One effort that is supporting widespread data collection is the Early Psychosis Intervention Network (EPINET). This NIMH-funded initiative is supporting national coordination of data collection from 101 early psychosis clinics across 17 states. This research endeavor will provide a much-needed snapshot of the current landscape of early psychosis care in this country as well as offer insights into how programs are operating at a community level.
In addition, national coordination of programs can support cross-learning and resource sharing. The Psychosis-risk and Early Psychosis Program Network (PEPPNET) offers a listserv and various working groups (lived experience, financing, training, and technical assistance) to support national coordination of early psychosis care. PEPPNET also offers an annual conference (typically in March) in collaboration with other partners.
Conclusion
Advances in early intervention for individuals with psychosis have led to coordinated approaches to treatment that include psychosocial support, psychotherapy, lifestyle intervention, lived-experience involvement, and medication management. These factors contribute to a more recovery-oriented and promising approach toward treatment. ■
Helpful Resources for More in-Depth Learning
Intervening Early in Psychosis: A Team Approach, edited by K.V. Hardy, J.S. Ballon, D.L. Noordsy, S. Adelsheim. Washington DC: American Psychiatric Association Publishing, 2019.
Psychosis Risk and Early Psychosis Program Network (PEPPNET).
Information about RAISE.
Information about NAVIGATE.
Information about EPINET.
APA’s Practice Guideline for the Treatment of Patients With Schizophrenia, Third Edition.
The 2009 Schizophrenia PORT Psychosocial Treatment Recommendations.
Author Disclosures
Katherine Eisen, Ph.D., is part of CBTp training contracts with various agencies across the United States. Kate Hardy, Clin.Psych.D., receives honoraria as a subject matter expert for Click Therapeutics and receives funding for training contracts across the United States. Jacob Ballon, M.D., M.P.H., has received honoraria from Alkermes for serving on its Scientific Advisory Board and from consulting to Teva, Indivior, Alto Pharmacy, and Corcept. Douglas L. Noordsy, M.D., has no disclosures to report.
