The notion that children's quality of life instruments need to be designed and applied in a manner specific to children's developmental and cognitive needs is now widely accepted. It is somewhat unclear at what age a children's designed instrument will suffice, and at what age adult PROs can be used with confidence. Specific research needs to focus directly on the content and format of quality of life assessments during the child-adolescent-young adult transition stages, particularly for children and young adults with disabilities. Thus, the theme for the Boston University (BU), Kessler Medical Rehabilitation Research &Education Center (KMRR) PROMIS Wave 2 research site application is PROs for Children and Young Adults with Disabilities. With this thematic focus, the BU/KMRR PROMIS Research site will evaluate current PROMIS child and adult item banks in a wide spectrum of childhood and young adult disabling conditions, and examine links between current child and adult PROMIS products. The BU/KMRR PROMIS Research site will develop a cohesive program of research that will span both childhood and young adult age groups. Our focus will be on children and young adults with disabilities, and how PRO quality of life assessments can be adapted to meet their needs. In Project #1, we will examine the responsiveness of the current PROMIS item banks for children and young adults with cerebral palsy who receive major musculoskeletal surgeries. The purpose of Project #2 is develop 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. Major childhood and adult conditions represented in the sampling plan include children and young adults with cerebral palsy, spinal cord injury and traumatic brain injury. In Project #3, we 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.
Given the high prevalence of children and young adults with disabilities and promising emerging interventions, appropriate updated quality of life assessments addressing the needs of children and young adults are needed in the innovative PROMIS system. Research directed at developing, testing, and disseminating effective and efficient PROMIS products for these groups can lead to improved clinical research.
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