PROS (Patient Reported Outcomes) for Children and Young Adults with Disabilities

描述（由申请人提供）：儿童生活质量工具需要以特定于儿童发展和认知需求的方式设计和应用的概念现在被广泛接受。目前还不清楚什么年龄的儿童设计的工具就足够了，什么年龄的成人PRO可以放心使用。具体的研究需要直接侧重于儿童-青少年-青年人过渡阶段生活质量评估的内容和形式，特别是对残疾儿童和青年人。因此，波士顿大学（BU），凯斯勒医疗康复研究与教育中心（KMRR）PROMIS第2波研究站点应用程序的主题是残疾儿童和青少年的PRO。有了这个主题的重点，BU/KMRR PROMIS研究网站将评估目前PROMIS儿童和成人项目银行在广泛的儿童和青少年残疾条件，并检查目前的儿童和成人PROMIS产品之间的联系。BU/KMRR PROMIS研究网站将开发一个有凝聚力的研究计划，将跨越儿童和年轻的成年人年龄组。我们的重点将是残疾儿童和年轻人，以及PRO生活质量评估如何适应他们的需求。在项目#1中，我们将检查当前PROMIS项目库对接受大型肌肉骨骼手术的脑瘫儿童和年轻人的响应性。项目#2的目的是在当前PROMIS儿科和成人项目库之间建立评分联系，以便在儿童-成人过渡期间使用类似的指标纵向使用PROMIS指标。抽样计划中所代表的主要儿童和成人疾病包括患有脑瘫、脊髓损伤和创伤性脑损伤的儿童和年轻人。在项目#3中，我们将评估PROMIS项目库的样本如何与年轻人合作，与从NeuroQoL SCI-QOL，SCI-CAT和TBI-QOL等免费项目开发的项目有关。

DESCRIPTION (provided by applicant): 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.