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儿童发展和认知需要的具体方式来设计和应用，这一概念现在已被广泛接受。有些不清楚的是，儿童设计的乐器在多大年龄时就足够了，以及成人专业人士在多大年龄可以自信地使用。具体研究需要直接侧重于儿童-青少年-青壮年过渡阶段生活质量评估的内容和形式，特别是残疾儿童和青壮年。因此，波士顿大学(BU)、凯斯勒医疗康复研究和教育中心(KMRR)PROMIS第二波研究网站申请的主题是为残疾儿童和青年提供PROS。以这一主题为重点，BU/KMRR PROMIS研究网站将评估当前儿童和成人PROMIS题库中广泛的儿童和年轻人残疾状况，并检查当前儿童和成人PROMIS产品之间的联系。BU/KMRR PROMIS研究网站将开发一个涵盖儿童和年轻人年龄段的有凝聚力的研究计划。我们的重点将是残疾儿童和年轻人，以及如何调整PRO生活质量评估以满足他们的需求。在项目1中，我们将检查当前PROMIS题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的目的是在当前的PROMIS儿科和成人题库之间建立评分链接，以便PROMIS的测量可以在这一儿童-成人过渡期间使用类似的度量标准。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年轻人。在项目#3中，我们将评估PROMIS题库的样本如何与年轻人合作，以及与从免费项目开发的项目(如NeuroQOL SCI-QOL、SCI-CAT和TBI-QOL)相关的项目。

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.