Developing the Pediatric Evaluation of Disability Inventory – Patient Reported Outcome (PEDI-PRO)

What is this study about?

This study is trying to design a new self-report assessment software for kids, teens, and young adults with developmental disabilities. Teens and young adults can use the self-report software to report how they do everyday activities at home, school, work and the community.

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.

The Youth Panel, a group of teens and young adults with developmental disabilities, is working with Dr. Jessica Kramer at Boston University to make the PEDI-PRO, gather data from other young people with developmental disabilities, and analyze the data. The Youth Panel will think of changes to make the questionnaire better and will share their findings with others.

Together, we are working hard to make sure the PEDI-PRO is easy to use by youth and young adults with developmental disabilities.

Check out a brief summary of our work.

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) and the Center for Translation of Rehabilitation Engineering Advances and Technology (TREAT; R24HD065703 and P2CHD086841).