Usability and Reliability of an Accessible Patient-Reported Outcome Measure (PROM) Software: The Pediatric Evaluation of Disability Inventory–Patient-Reported Outcome (PEDI–PRO)

Abstract

IMPORTANCE: Patient-reported outcome measures (PROMs) are used in rehabilitation to evaluate outcomes. We integrated a new PROM for transition-age youth with intellectual and/or developmental disabilities (IDD), the Pediatric Evaluation of Disability Inventory-Patient-Reported Outcome (PEDI-PRO), with a computer-delivered survey platform (Accessible Testing Learning and Assessment System) to enhance cognitive accessibility. OBJECTIVE: To evaluate the usability of the PEDI-PRO software and to investigate its reliability and acceptability to transition-age youth with IDD. DESIGN: Clinical field testing and a survey; repeated-observation test-retest design. SETTING: Clinicians evaluated the PEDI-PRO's usability in school and health care contexts; research staff conducted reliability and acceptability testing in natural settings. PARTICIPANTS: Occupational therapists (n = 12) and physical therapists (n = 2) administered the PEDI-PRO to 39 youths with IDD. Fifty-five transition-age youth with IDD (M age = 19.7) completed the PEDI-PRO twice. OUTCOMES AND MEASURES: Clinicians completed the System Usability Survey (SUS) and open-ended feedback. Youth provided feedback via a brief survey. RESULTS: The mean SUS rating was 84.00 (SD = 11.68), exceeding the industry standard. Intraclass correlations ranged from .80 to .83 across the three PEDI-PRO domains. Internal reliability (α) was .86-.90 across domains. Youth reported that they liked the accessibility features: interface images, button sounds, read-aloud audio, and rating category choices (M = 88.8%, SD = 5.1%). CONCLUSIONS AND RELEVANCE: The PEDI-PRO supported transition-age youth with IDD to reliably report perceived functional performance. The accessible software was favorably perceived by both clinicians and youth. WHAT THIS ARTICLE ADDS: Design features of the PEDI-PRO make it easy to use in practice with transition-age youth with IDD. The PEDI-PRO's cognitively accessible administrative design, including step-by-step instructions for teaching PROM use and a self-reflective questioning technique, could serve as a training model for this and other PROMs.

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