This study used cognitive interviews to evaluate a new approach to youth self-report, called the Pediatric Evaluation of Disability Inventory–Patient-Reported Outcome (PEDI–PRO). The PEDI–PRO assesses the functional domains of Social/Cognitive (S/C), Daily Activities (DA), and Mobility (M) using everyday life situations.

The research questions were (1) Do youths with developmental disabilities (DD) interpret items in the intended manner, (2) do youths choose rating categories that match open-ended descriptions of their abilities, and (3) do youths refer to everyday life situations when describing their functional abilities using the PEDI–PRO?

RATIONALE: Patient-reported outcome measures are needed to demonstrate the impact of rehabilitation interventions on the lives of youths with DD. There is a need for innovative assessment approaches that support cognitive processes required for self-report and thus improve the meaningfulness and reliability of self-reports by youths with DD.

DESIGN: Qualitative cognitive interviews coded and transformed for descriptive analysis

PARTICIPANTS: We recruited participants from our internal group of youth collaborators (n = 5) and external disability service organizations (n = 12). All youths were ages 8–21 yr, identified as having DD and could communicate simple ideas in English and attend to a task for 5 min with support. The sample had a mean age of 17 yr, 7 mo and was 59% female and 29% minority/non-White; and 65% of youths had an intellectual disability in addition to other developmental delays.

METHOD: Items from each functional domain (S/C, DA, and M) were linked to 11 everyday life situations (e.g., getting ready in the morning, going to a restaurant) and divided into item sets. Participants chose to complete item sets for two everyday life situations using two different rating scales. Most items (93%) were reviewed by 3 participants using both of the potential rating scales (97%). A modified cognitive interview approach reduced cognitive demands: For each item, the interviewer asked one question about comprehension, rating decision making, or abilities.

ANALYSIS: Each open-ended response was independently coded by two staff. Rater agreement was 80%–92%. We coded open-ended responses for descriptions of intended or unintended item content. We coded youths’ descriptions of their abilities (positive, negative, or mixed ability) and evaluated whether their descriptions were consistent with their rating scale choices. We coded responses for explicit references to the item set’s everyday life situation. All codes were then transformed and analyzed (frequencies, cross-tabs) for each functional domain.

RESULTS: Most open-ended responses matched the intended item meaning (S/C = 61.6%, DA = 69.1%, mean [M] = 65%). Performance descriptions were consistent with self-reported ratings for both positive (M = 100%) and negative (M = 89%) rating categories. When an item contained words and pictures specific to the everyday situation (e.g., waitress for going to a restaurant), youths referred to the everyday situation 70% of the time when making a rating decision.

DISCUSSION: Youths interpreted most items in the intended manner and selected ratings that matched their self-described abilities. Using everyday life situations to assess functional tasks may provide contextual cues that enhance comprehension and recall.

IMPACT: Available self-reports assess professionally defined constructs such as “upper extremity” or “self-care” that may lack meaning for youths with DD. This study provides initial evidence of the capacity of youths with DD to self-report functional abilities when assessed in the context of everyday life situations.