Quality of life assessment in people living with psychosis

Background The value of measuring health-related quality of life (HRQoL) among people with persisting psychotic disorders is contentious, despite the call for it in treatment outcome and economic evaluation. Our aim was to investigate the validity of psychotic patients' self-report regarding their HRQoL, using the WHOQOL-Bref, a generic measure, and the Assessment of Quality of Life (AQoL), a utility instrument. Methods Community-dwelling patients (N = 173) with a long-standing psychotic disorder who were attending an inner-city mental health service completed the WHOQOL and AQoL, and measures of their symptoms, disability and living conditions. Case managers completed the measures as proxies. Results Both instruments were acceptable and completed readily. There were significant differences by instrument dimension, with social relationships obtaining the worst scores. Patients' and case managers' scores correlated moderately, with case managers' being lower. When examined by other study instruments, correlations varied according to who completed the instrument, which suggested bias by instrument completer. Patients' scores correlated better with a neutral estimator of health status, suggesting there are areas of patients' lives that clinicians know little about. When examined against population data, patients experienced significantly worse HRQoL. Conclusions The WHOQOL-Bref and AQoL are sensitive to the HRQoL status of those with long-term mental illness. We found no evidence to reject patient self-reports. Given systematic differences between patient and case manager reports, patient perspectives should be preferred in evaluation research. Utility measurement and generic HRQoL assessment are feasible and important in this population.