Patient-Reported Outcome Measures in Clinical High Risk for Psychosis: A Systematic Review

Abstract

A key issue in both research and clinical work with youth at clinical high risk (CHR) of psychosis is that there are clearly heterogenous clinical outcomes in addition to the development of psychosis. Thus, it is important to capture the psychopathologic outcomes of the CHR group and develop a core outcomes assessment set that may help in dissecting the heterogeneity and aid progress towards new treatments. In assessing psychopathology and often poor social and role functioning, we may be missing the important perspectives of the CHR individuals themselves. It is important to consider the perspectives of youth at CHR by using Patient Reported Outcome Measures (PROMs). This systematic review of PROMs in CHR was conducted based on a comprehensive search of several databases and followed PRISMA guidelines. Sixty-four publications were included in the review examining PROMs for symptoms, functioning, quality of life, self-perceptions, stress and resilience. Typically, PROMs were not the primary focus of the studies reviewed. The PROMs summarized here fit with results published elsewhere in the literature based on interviewer measures. However, very few of the measures used were validated for CHR or for youth. There are several recommendations for determining a core set of PROMs for use with CHR.

Cognitive-Behavioral Social Skills Training: Outcome of a Randomized Controlled Trial for Youth at Risk of Psychosis

“…This was one of the conclusions of a recent review of Patient Reported Outcome Measures used with CHR populations. 43 Secondly, we did not collect any qualitative data related to tolerability or group satisfaction. However, the mean number of sessions attended was 13.8 out of a possible 18 for both groups.…”

Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ): Rationale and Study Design of the Largest Global Prospective Cohort Study of Clinical High Risk for Psychosis

“…A focus on Patient Reported Outcomes (PROs) is rare in CHR longitudinal studies. 40 However, several important PROs will be addressed: the Patient Global Impression of Severity to assess participants’ impression of the severity of their symptoms; the Patient Reported Outcomes Measurement Information System-Sleep Disturbance 41 to measure sleep quality, depth, and restoration; the Perceived Stress Scale 42 ; the Perceived Discrimination Scale 43 to determine whether participants have experienced discrimination in their lifetime; the Pubertal Development Scale 44 for determining the development of secondary sexual characteristics; and, lastly, the Psychosis Polyrisk Score 45 to capture exposure to a range of environmental risk factors associated with psychosis.…”