Enabling self-reported outcomes for youth with developmental disabilities: The Pediatric Evaluation of Disability Inventory-Patient Reported Outcome (PEDI-PRO).
What is this study about?
The PEDI-PRO is based on an existing assessment, called the Pediatric Evaluation of Disability Inventory (PEDI). The PEDI is completed by parents or other professionals in places like schools, occupational and physical therapy, and hospitals. However, our team believes young people with developmental disabilities have a right to be involved in planning their future and evaluating the outcomes of educational programs and healthcare. The PEDI-PRO will provide teens and young adults with developmental disabilities the opportunity to identify the everyday activities and tasks they want and need to get better at doing. The PEDI-PRO will also provide teens and young adults the chance to self-evaluate the progress they make over time: either in school, after receiving specialized training or therapy, or after receiving healthcare services. Learn more at the Youth & Young Adult Empowerment Leadership and Learning (YELL) Lab website.
What are the Eligibility Criteria?
- 14 – 22 yrs
- Developmental Disability Diagnosis
- Can comprehend and express themselves in English
- Attend to task with support 15 mins
What are participants asked to do?
Eligible participants are invited to complete a one time interview with researchers. During interview participant will learn to use the PEDI PRO app, and then use the tool to identify how hard or easy certain everyday life tasks are for them. Some other demographic and survey information will also be collected from parents of participants.
Is there payment for participation?
Temple researchers will provide participants with $20 gift card as a thank you after the data collection is complete and another $10 when parent surveys are complete. Participants can earn up to $30 in total.
This study is funded by the 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, R42HD090772) and the Center for Translation of Rehabilitation Engineering Advances and Technology (TREAT; R24HD065703 and P2CHD086841).