Clinical Practice Data Research Project: Enhancing Patient Engagement in LHS Participant and in CSC Treatment

Project Summary/abstract Although coordinated specialty care (CSC) treatment compared with standard care for first episode psychosis (FEP) improves retention in treatment, treatment disengagement remains a major clinical challenge even with CSC care. Premature treatment disengagement limits individuals with FEP from receiving the full benefits of CSC care. A key component of EPINET learning health systems is use of data to improve outcomes for individuals with FEP. The main data source is the Core Assessment Battery (CAB) that all EPINET sites use. The CAB contains clinician-reported and patient-reported outcomes (PROs). Across the EPINETS, a substantial number of participants do not do PROs assessments, thus limiting sites’ ability to understand participants’ perceptions of their treatment and outcomes. Using data from our current ESPRITO EPINET project and data from the proposed ESPRITO project we will use CAB data to characterize participants who disengage either from doing PROs assessments or from CSC treatment. For the proposed work, we will supplement CAB data with data on participant perception of how burdensome it is to fulfill the requirements of treatment and qualitative interviews. We will also examine whether disengagement in PROs assessments is related to treatment disengagement. Information from the analyses will be used in a learning collaborative focused upon enhancing engagement in PROs assessment and treatment retention. The study results have potential benefits to participants through enhanced engagement in treatment, to sites by enhancing PRO assessments and thus understanding of participants’ perceptions and to the field in general by increased understanding of factors associated with missing data in the de-identified ESPRITO data that will be available in the NIMH National Data Archive.