Research Article
Issue Date: January/February 2021
Published Online: December 02, 2020
Updated: December 14, 2020
Usability and Reliability of an Accessible Patient-Reported Outcome Measure (PROM) Software: The Pediatric Evaluation of Disability Inventory–Patient-Reported Outcome (PEDI–PRO)
Author Affiliations
  • Jessica M. Kramer, PhD, OTR/L, is Associate Professor, Department of Occupational Therapy, University of Florida, Gainesville. At the time of the study, Kramer was Associate Professor, Department of Occupational Therapy, Boston University, Boston, MA; jessica.kramer@phhp.ufl.edu
  • Ariel E. Schwartz, PhD, OTR/L, is Postdoctoral Fellow, Center for Psychiatric Rehabilitation, Boston University, Boston, MA.
  • Daniel K. Davies, MA, is Founder and President, AbleLink Smart Living Technologies, Colorado Springs, CO.
  • Steven E. Stock, MPA, is Vice President, AbleLink Smart Living Technologies, Colorado Springs, CO.
  • Pengsheng Ni, MD, MPH, is Research Associate Professor, Biostatistics and Epidemiology Data Analytics Center, Department of Health Law, Policy and Management, Boston University, Boston, MA.
Article Information
Research Articles
Research Article   |   December 02, 2020
Usability and Reliability of an Accessible Patient-Reported Outcome Measure (PROM) Software: The Pediatric Evaluation of Disability Inventory–Patient-Reported Outcome (PEDI–PRO)
American Journal of Occupational Therapy, December 2020, Vol. 75, 7501205010. https://doi.org/10.5014/ajot.2020.040733
American Journal of Occupational Therapy, December 2020, Vol. 75, 7501205010. https://doi.org/10.5014/ajot.2020.040733
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.