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

This is instrument development, not a clinical trial, and the authors say item candidates require further development before inclusion in the fully developed PROM. The youth team included eight youth, and Phase I and Phase II focus groups included 19 and 43 youth, so findings reflect specific groups of transition-age youth with developmental disabilities. The sample used convenience recruitment and oversampled transition-age youth with cognitive disabilities, which may limit relevance for younger youth or youth with other disabilities. Only a few focus group youth used mobility devices, although two youth team members were wheelchair users. Findings may not apply to youth with developmental disabilities outside the United States. The qualitative analysis did not incorporate steps to establish trustworthiness. University researchers discontinued three everyday life situations that youth had voted on, and the authors note youth may have felt uncomfortable challenging researchers. The authors say the framework and items still need empirical validation, including whether items coalesce into common domains and test-retest reliability.

The authors reported no conflicts of interest.

Do not read the PEDI-PRO as a validated measure or as proof that a therapy works. The paper developed draft items and says further development and validation are needed.