What treatments help young people in the early stages of psychosis?

Challenge

Each year, approximately 100,000 adolescents and young adults in the U.S. experience first-episode psychosis (FEP). If treatment is delayed, inconsistent, or less than ideal, the consequences can be grave—both clinically and economically. To nurture a psychosis learning community to advance health care interventions for this population through practice-oriented research, the National Institute of Mental Health (NIMH) established the Early Psychosis Intervention Network (EPINET) in 2019. EPINET is made up of 8 Regional Scientific Hubs (RSHs), over 101 early psychosis clinics across 17 states, and the EPINET National Data Coordinating Center (ENDCC).

As the ENDCC, Westat works closely with NIMH and the RSHs, overseeing the large-scale research that involves data shared by the regional hubs. The data will help improve early identification, diagnosis, clinical assessment, intervention effectiveness, and health outcomes in clinics offering evidence-based care to persons experiencing their FEP. Managing this research requires linking the early psychosis clinics; ensuring standardized clinical measures and uniform data collection methods; facilitating data sharing agreements; integrating client-level data across service users and clinics; and disseminating the information. This work necessitates expertise in child and adolescent mental health, big data collection, technological prowess, and high-level statistical skills.

Solution

Westat created an infrastructure to facilitate collaboration, early psychosis data sharing, the exchange of innovative practices and clinical expertise, provision of analytic support, and dissemination of information and activities across hubs and clinics.

Through a consensus process by the EPINET Steering Committee, which is made up of principal investigators from each hub and the ENDCC, we developed the EPINET Core Assessment Battery (CAB). CAB includes standardized measures and individual items that assess key domains of early psychosis psychopathology, recovery, contextual factors, and treatment that can reasonably be included in the data collection efforts within Coordinated Specialty Care (CSC) clinics.

Later, we created the Web-based Core Assessment Battery (WebCAB), which serves as a resource for data collection efforts within CSC clinics outside of EPINET and includes a number of standardized measures within assessment domains (e.g., symptoms, functioning). The WebCAB tracks which assessments have been completed by which clients over time, interprets client scores, and uses these data for clinical intervention or quality improvement. It also sees and understands client improvement and changes over a time period. As the clinics serve a diverse population, results also include each client’s racial and ethnic characteristics. Data can be downloaded immediately for use locally for research and clinical purposes.

This work also involves curating and harmonizing key assessment measures, sharing clinical strategies and data elements, and implementing a health informatics approach within and across regional hubs. Westat also developed a research dissemination infrastructure to circulate CSC resources to providers and the science and patient communities. To open this data source to the general society, we have also built a public EPINET website.

Westat is joined in this effort by 4 key subcontractors—the National Association of State Mental Health Program Directors (NASMHPD), the NASMHPD Research Institute (NRI), DARTNet Institute, and Stanford University—as well as a number of consultants.

Results

Initial research is promising, showing that for individuals with psychotic disorders early intervention involving integrated, coordinated care can be effective, but we still have much more data to coordinate, integrate, analyze, and share. The fact that we have, for the first time, this national database with data from over 100 early psychosis clinics offers tremendous hope that we can expand our understanding of FEP and alter the ways we treat it.