The Readability of Patient-Reported Measures in Early Psychosis

Patient-reported measures are increasingly central to early intervention in psychosis. Many persons with psychosis have lower educational attainment than the general population and cognitive difficulties, making the readability of measures salient for this population. However, the readability of patient-reported measures in psychosis has never been investigated. This study assessed the readability levels of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in early intervention in psychosis.

PROMs and PREMs were identified from a scoping review of measures used in early intervention services for psychosis (January 2000-January 2024). Of 111 measures identified, 104 (89 PROMs; 15 PREMs) were assessed using mean grade levels derived from 3 established readability formulas (Flesch-Kincaid Grade Level, Simple Measure of Gobbledygook index, FORCAST formula), applied to instructions, items, and total scales.

Overall, 82.7% of patient-reported measures exceeded the recommended 6th-grade reading level. Instructions were harder to read than items (mean readability: 9.44 vs. 7.95; t(90) = 6.54, P < .001). PREMs demanded higher readability levels than PROMs. Readability scores were different across formulas, with Flesch-Kincaid consistently producing lower scores. Except for one, the strikingly few measures co-developed with patients (n = 14) also exceeded 6th-grade reading level.

Most patient-reported measures in early psychosis exceed recommended readability levels, raising concerns about accessibility, validity, and whose experiences are represented in patient-reported data. This creates impetus for integrating readability assessments into measures development. More fundamentally, centering the participation of persons with lived experience can support readable, relevant, and patient-centered assessments reflecting the language, priorities, and realities of people with psychosis, and advance epistemic justice.