Socioeconomic Influences on Engagement in Coordinated Specialty Care: Perspectives from Publicly Insured Patients on Disengagement and Re-Engagement
Brittany M Gouse MD MPH (1), Samantha LaMartine PsyD, BreeOna Namukowa MD MPH, Amelia Blanton BS, Haniya Rizwan, Sonya Abdalla, Peggy Williams, Julia Browne PhD, Hannah E. Brown MD
WRAP Program, Boston Medical Center
Background: Despite the benefits of coordinated specialty care (CSC), 30-50% of patients drop out within two years, leading to adverse outcomes, such as unemployment, impaired functioning, and reduced quality of life. Socioenvironmental factors (e.g., urbanicity and poverty) are linked to risk for psychotic illness, and socioeconomic (SES) drift often follows illness onset. However, less is known about how patient-level SES and systems-level structural factors interact to influence CSC dropout. Further, the factors related to re-engagement in care after treatment dropout is not well understood.
Methods: We conducted 18 semi-structured interviews of publicly insured patients who engaged in CSC between 2019-2024 who had at least one 90 day gap in treatment and re-engaged in care. Semi-structured interviews explored treatment disengagement factors, with specific prompts. Analysis used an inductive thematic approach with a codebook iteratively refined from the first three transcripts. Coding was triple-checked, with discrepancies resolved by consensus. We examined themes across three phases of care: initial engagement, disengagement, and re-engagement.
Results: Seventeen initial themes were refined to 13, validated by an independent auditor. Themes varied across phases of treatment engagement. Participants often described early care as disempowering, with several feeling distrustful of providers due to “feeling like a guinea pig.” Lack of perceived need for treatment and structural barriers (e.g., transportation) were common factors related to CSC disengagement. Family, social supports, and provider rapport were pivotal for re-engagement in care. Patients suggested community-building (e.g., social gatherings), integration of spiritual leaders into care, enhanced transparency in clinical decision making as strategies to promote sustained engagement in care for their peers.
Conclusion: For individuals with psychosis, early mistrust, =dehumanizing treatment experiences, and structural barriers contribute to disengagement from care. Programs can reduce dropout by improving access, embedding trauma-informed, recovery-oriented care, and fostering consistent, supportive provider relationships to rebuild trust and sustain engagement.