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的方式设计和应用于儿童的发展和认知需求的概念现在被广泛接受。目前还不清楚儿童设计的乐器在什么年龄才够用，以及成年专业钢琴师在什么年龄可以放心使用。具体的研究需要直接集中在儿童-青少年-青年过渡阶段，特别是残疾儿童和青年的生活质量评估的内容和形式。因此，波士顿大学（BU）、凯斯勒医学康复研究与教育中心（KMRR） PROMIS Wave 2研究站点应用的主题是残疾儿童和青少年的PROs。有了这个主题焦点，BU/KMRR PROMIS研究网站将在广泛的儿童和年轻人残疾条件下评估当前的PROMIS儿童和成人项目库，并检查当前儿童和成人PROMIS产品之间的联系。BU/KMRR承诺研究网站将开发一个有凝聚力的研究项目，将跨越儿童和年轻人年龄组。我们的重点是残疾儿童和青年，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项目库对接受重大肌肉骨骼手术的脑瘫儿童和年轻人的响应性。项目#2的目的是在目前的PROMIS儿童和成人题库之间建立一个评分链接，以便在这个儿童-成人过渡期间使用类似的度量标准纵向使用PROMIS度量。抽样计划中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青年。在项目#3中，我们将评估从NeuroQoL SCI-QOL、SCI-CAT和TBI-QOL等免费项目中开发出来的样本如何与年轻人一起工作。

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.