Development of the Pediatric Disability Inventory-Patient Reported Outcome (PEDI-PRO) measurement conceptual framework and item candidates

Abstract

Background: To address the gap in patient reported outcome measures (PROMs) of functional performance appropriate for youth and young adults with developmental disabilities (DD) we developed the Pediatric Evaluation of Disability Inventory-Patient Reported Outcome (PEDI-PRO).

Aim/Objective: We used a participatory process to: (1) Develop the measurement conceptual framework; (2) Identify discrete functional tasks to include in the PEDI-PRO; and (3) Refine item candidates.

Methods: We collaborated with eight youth with DD over 33 months. These youth and university researchers explored the construct of functional performance, developed and refined items, and collected and analyzed data. We also conducted focus groups with youth with DD (n = 62) and rehabilitation professionals (n = 26), and consulted with PEDI measurement experts (n = 3).

Results: Youth’s understanding of their functional performance is embedded in their experiences participating in everyday life situations. We developed 78 Daily Activities, 65 Social/Cognitive, and 52 Mobility item candidates that are linked to 11 everyday life situations to assess discrete functional tasks important to youth with DD and rehabilitation professionals.

Conclusion and Implications: As a result of our participatory development process, the PEDI-PRO’s proposed conceptual framework and item candidates are grounded in the lived experience of youth with DD.

Keywords:

• Outcome assessment (health care)
• patient participation
• disabled children
• community-based participatory research

Disclosure statement

All authors declare no conflict of interest.

Acknowledgments

We would like recognize the youth team (listed in Table 1) for their partnership in the development of the PEDI-PRO. The youth team members selected the name used for acknowledgments (in alphabetical order): Alice, Brendan Durkin, Byron, Devan DeSisto, Marianne Mahoney, Tristan, Sierra Wheaton- Williams.

We also thank the youth with disabilities and professionals who participated in this research. We would like to recognize research assistants: Jonathan Hairell, Jessica DeMarinis, Melissa Regan, and Adam Swatt.

Permission to develop the PEDI-PRO has been received from the CRE Care and the authors of the PEDI-CAT.

Additional information

Funding

This research is supported by a grant from National Center Medical Rehabilitation Research, National Institute of Child Health and Human Development/National Institute Neurological Disorders and Stroke, National Institutes of Health (K12 HD055931).