Mounting evidence has indicated that early intervention leads to improved clinical and functional outcomes for young persons experiencing recent onset psychosis. As part of a large early detection campaign, the present study aimed to investigate subjective experiences during the duration of untreated psychosis (DUP), or time between psychosis onset and treatment contact. Participants were 10 young adults participating in early intervention services for psychosis. After DUP was estimated during standardized baseline assessment, participants engaged in qualitative interviews focused on their life experiences prior to treatment and leading up to the present. Mixed methods data analyses compared standardized DUP estimates with participants’ subjective narratives. Findings revealed that participants experienced and conceptualized a longer trajectory of subjective difficulties (TSD) beginning before and extending beyond standardized DUP estimates. Participants emphasized striving for independence and social belonging. The majority of participants reported benefiting from their current services and believed that earlier support of some kind would have been beneficial. These findings support previous research on subjective barriers to early detection and treatment seeking in young adults experiencing psychosis. Implications and future research directions include further efforts to differentiate the struggles unique to early psychosis from psychosocial risk factors and other challenges of young adulthood.
Objective An extensive international literature demonstrates that understanding pathways to care (PTC) is essential for efforts to reduce community Duration of Untreated Psychosis (DUP). However, knowledge from these studies is difficult to translate to new settings. We present a novel approach to characterize and analyze PTC and demonstrate its value for the design and implementation of early detection efforts. Methods Type and date of every encounter, or node, along the PTC were encoded for 156 participants enrolled in the clinic for Specialized Treatment Early in Psychosis (STEP), within the context of an early detection campaign. Marginal-delay, or the portion of overall delay attributable to a specific node, was computed as the number of days between the start dates of contiguous nodes on the PTC. Sources of delay within the network of care were quantified and patient characteristic (sex, age, race, income, insurance, living, education, employment, and function) influences on such delays were analyzed via bivariate and mixed model testing. Results The period from psychosis onset to antipsychotic prescription was significantly longer (52 vs. 20.5 days, [p = 0.004]), involved more interactions (3 vs. 1 nodes, [p<0.001]), and was predominated by encounters with non-clinical nodes while the period from antipsychotic to STEP enrollment was shorter and predominated by clinical nodes. Outpatient programs were the greatest contributor of marginal delays on both before antipsychotic prescription (median [IQR] of 36.5 [1.3–132.8] days) and (median [IQR] of 56 [15–210.5] days). Sharper functional declines in the year before enrollment correlated significantly with longer DUP (p<0.001), while those with higher functioning moved significantly faster through nodes (p<0.001). No other associations were found with patient characteristics and PTCs. Conclusions The conceptual model and analytic approach outlined in this study give first episode services tools to measure, analyze, and inform strategies to reduce untreated psychosis.
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