Refining the Pediatric Evaluation of Disability Inventory–Patient‐Reported Outcome (PEDI‐PRO) item candidates: interpretation of a self‐reported outcome measure of functional performance by young people with neurodevelopmental disabilities

Abstract

AIM This study examined the item interpretability and rating scale use of the Pediatric Evaluation of Disability Inventory–Patient-Reported Outcome (PEDI-PRO) by young people with developmental disabilities. The PEDI-PRO assesses the functional performance of discrete functional tasks in the context of everyday life situations. METHOD A two-phase cognitive interview design was implemented with a convenience sample of 37 young people (mean age 19y, 0 mo, SD: 2y 5 mo; 35% (13/37) male and 65% (24/37) female; 68% with intellectual disability) with developmental disabilities. In phase I, 182 item candidates were each reviewed by an average of four young people. In phase II, 103 items were carried forward or revised and each reviewed by an average of seven additional young people. Two raters coded responses for intended item interpretation and performance quality; codes were analysed using descriptive statistics. Qualitative analysis explored young people’s self-evaluation process. RESULTS Items were interpreted as intended by most young people (mean 86%). Young people can use PEDI-PRO response categories appropriately to describe their performance: 94% of positive performance descriptions coincided with a positive response category choice; 73% of negative descriptions with a negative choice. Young people interpreted items in a literal manner, and their self-evaluation incorporated the use of supports that facilitate functional performance. INTERPRETATION The PEDI-PRO’s measurement framework appears to support the self-evaluation of functional performance of young people with developmental disabilities.

Determinants of change in home participation among critically ill children

“…This finding may be because of the timing of data collection, either with respect to the relatively short length of study or to the timing of follow-up observations. 32,33 Determinants of change in home participation after critical illness 13,[28][29][30] Our PEM response rates were high at 3 and 6 months follow-up, indicating the feasibility of gathering these data over a longer duration to detect significant change.…”

“…However, new self-report versions of participation measures merit further study on young people's perspectives of their home participation after discharge. 32,33…”

Capturing the complexity of healthcare for people with Down syndrome in quality indicators - a Delphi study involving healthcare professionals and patient organisations

“…It may therefore be worthwhile to explore other ways to obtain information from people with DS that could be used for quality improvements. Examples are using narratives for evaluation [45] or apps especially designed for people with DS/ID [46].…”

Cognitive interviews in patient‐reported outcome measures of function for young people with neurodisabilities

“…The purpose of the paper by Kramer and Schwartz was to examine item interpretability of the Pedatric Evaluation of Disability Inventory–Patient‐Reported Outcome (PEDI‐PRO), which assesses the performance of functional tasks in everyday life. More specifically, it sought to examine the efficacy of an adapted cognitive interview methodology for refining PEDI‐PRO items for use by young people with neurodevelopmental disabilities.…”

“…The article by Kramer and Schwartz adds to our current understanding of the efficacy of cognitive interviews in development of PROs for young people by including children and adolescents with neurodevelopmental disabilities. Since most PROs do not include this population in their development, they are inappropriate for their use.…”