Results from a study published in Psychiatric Services outline youth experiences in coordinated specialty care (CSC) programs for first-episode psychosis. Interviewed participants described improvements in various domains which were not adequately captured by standardized outcome measures. These results support the use of “mixed-method” study outcomes in assessing patient experiences.
This study evaluated the implementation of CSC services at 35 diverse clinical sites across the United States. Each study was visited twice across 2018 and 2019. CSC team leads were asked to identify patients who may be willing to participate in interviews about their experience with CSC.
Participant interviews took place without any CSC clinic staff present. Interviews were 20-60 minutes in length and addressed patients’ experience with “change”, including change in symptoms, change in attitude and/or perspective, and change in social/interpersonal functioning. All interviews were recorded, transcribed, and then coded to identify relevant themes.
The interview cohort comprised 121 patients. Mean age was 22.7 years (range, 14-35) and 71% of participants were nonwhite. Length of time in CSC care ranged from 1 month to 4 years.
Specific areas of change were categorized into 7 higher-order domains: (1) symptomatology; (2) social and interpersonal functioning; (3) attitude and perspective; (4) treatment engagement; (5) functional outcomes and independence; (6) general functioning and health; and (7) substance use. The most frequently mentioned improvements were reduction in psychopathology (50%), improvements in social and interpersonal behavior (39%), changes in attitude and perspective (39%), and increased treatment engagement (39%).
Participants who had been in care longer endorsed a greater number of distinct changes than those with shorter care duration (P =.035). Specifically, those in a CSC program for <6 months reported an average of 1.5 changes, compared to 3.5 changes among those who had been in a program for >30 months.
Among patients who identified an underlying cause for their improvements, the most commonly endorsed reason was therapy (n=47; 46%). Medications (14%) and “instrumental support” (15%) were also endorsed as the sources of positive change. Instrumental support comprised case management, income-based benefits, education and employment support, and other occupational services.
In this interview-based study, patients enrolled in CSC for first-episode psychosis reported a range of positive improvements. No single underlying mechanism predicted improvements, though length of time in care was associated with a greater number of changes. The primary limitation was the risk for selection bias; patients who elected to be interviewed may have had different perspectives from those who declined to participate.
”The findings of this study highlight the range and variety of clients’ first-person perspectives on the impact of CSC, most important areas of impact, and the underlying mechanisms,” the investigators wrote. “The findings reinforce the value of mixed methods in both research and quality improvement efforts as well as for greater integration of patient-selected outcome measures.”
Daley TC, Jones N, George P, Rosenblatt A. First-person accounts of change among young adults enrolled in coordinated specialty care for first-episode psychosis [published online October 14, 2020]. Psychiatr Serv. doi: 10.1176/appi.ps.202000101