A Participatory Approach to Developing the new Pediatric Evaluation of Disability Inventory Patient-Reported Outcome

This study collaborated with a team of youths with developmental disabilities (DD) to develop items for the Pediatric Evaluation of Disability Inventory–Patient Reported Outcome (PEDI–PRO) Daily Activities (DA), Social/Cognitive (S/C), and Mobility (M) functional domains. Research questions were (1) What are salient everyday life situations and related functional skills for youth with DD and (2) what rating scales are easiest to use?

RATIONALE: Given concerns about the ability of youth with DD to self-report, accessible self-reports are needed. Involving youth with DD in the measurement development process may lead to more accessible PROs.

DESIGN: Participatory research using focus groups

PARTICIPANTS: We invited 8 youths with DD with advocacy experience to join the team of researchers; 4 female (F), 5 Caucasian, 6 with intellectual disabilities (ID). Focus-group inclusion criteria were as follows: Communicate simple ideas in English and attend to task for 5 min. We held 5 focus groups at schools with 24 youths: mean (M) age = 17 yr, 9 mo; 58% F; 77.3% Caucasian; 60% with ID.

METHOD: To develop items, 2 youth team members reviewed each parent-report PEDI item. To create new items, the youth team participated in two activities (e.g., shopping, taking public transportation) and identified each functional step of the activity. Focus groups were co-conducted by the youth team. Participants created posters describing the activities and skills needed to be more independent at school, home, and work and in the community. Each participant also answered four functional skill questions using five rating scales developed by the youth team. Participants provided feedback and voted for their most and least favorite rating scale.

ANALYSIS: To identify salient content for the item pools, the youth team counted each functional task or life situation that appeared in posters. The youth team also analyzed bar graphs depicting the number of votes for the most and least favorite rating scales. We also analyzed response frequencies for each rating scale and calculated the percentage of participants who, when answering the same question, selected all positive or all negative rating categories using all five scales.

RESULTS: In focus groups, the most commonly identified everyday life situations were sports, shopping, using public transportation, using the computer, going places in the community (e.g., restaurant), and socializing. Participants also frequently identified the functional skills of cleaning, managing money, and cooking. The two most favored scales were “can/can’t” and “hard/a little hard/a little easy/easy.”

Participants chose positively worded rating categories 62.5%–100% of the time for the five scales. Participants provided consistent self-reports when answering the same item using the five different scales 16%–100% of the time (M = 50%). Using these data, the youth team developed items pools (Items: S/C = 64, DA = 71, M = 44) and selected the two favored rating scales.

DISCUSSION: Our collaboration with the youth team and results suggest that youth with DD think about their functional skills within the context of everyday life situations. To facilitate more reliable self-reports, the PEDI–PRO will link items from each functional domain to 11 everyday life situations (e.g., going to a restaurant, getting ready in the morning). For example, for “Going to a restaurant,” youth will answer questions about sitting in a booth (M), communicating with a waiter (S/C), and using a knife and fork (DA). The PEDI–PRO will also use an accessible computer platform with images and text to speech.

IMPACT: The perspectives of youth with DD have been underrepresented in outcomes studies because of a lack of accessible measures. The PEDI–PRO may address this gap and provide youth with DD access to self-reported outcome measurement.