Patient Reported Outcomes for Children and Young Adults with Disabilities
The Patient Reported Outcomes for Children and Young Adults with Disabilities project will evaluate current child and young adult patient reported outcomes (PROs) and examine links between child and adult PROMIS products within a cohesive program of research that will span both childhood and young adult age groups.
This work is being done as part of the Patient-Reported Outcomes Measurement Information System (PROMIS), a network of NIH-funded primary research sites and coordinating centers working collaboratively to develop a series of dynamic tools to reliably and validly measure PROs. PROMIS provides an opportunity to improve healthcare outcomes by giving decision makers hard data on how healthcare affects what patients are able to do and how they feel. The HDR Institute is a member of this network.
The project will be divided into three sections:
- One section will examine the responsiveness of the current PROMIS item banks for children and young adults with cerebral palsy who receive major musculoskeletal surgeries;
- Another is developing a scoring link between current PROMIS pediatric and adult item banks so that the PROMIS measures can be used longitudinally during this child-adult transition using a similar metric;
- The last one will evaluate how a sample of the PROMIS item banks work with young adults in relationship to items developed from complimentary projects such as NeuroQoL SCI-QOL, SCI-CAT, and TBI-QOL.