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

针对残疾儿童和青少年的 PROS（患者报告结果）

基本信息

批准号：
8334382
负责人：
ALAN Maurice JETTE
金额：
$ 62.57万
依托单位：
BOSTON UNIVERSITY MEDICAL CAMPUS
依托单位国家：
美国
项目类别：
财政年份：
2009
资助国家：
美国
起止时间：
2009-09-30 至 2015-07-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8334382
关键词：
Address Adolescent Adult Age Biological Models Boston Brain Injuries Cerebral Palsy Child Childhood Clinical Clinical Research Cognitive Collaborations Development Disabled Persons Education Foundations Funding High Prevalence Individual Institution Interdisciplinary Study International Intervention Journals Lead Link Measures Metric Musculoskeletal Operative Surgical Procedures Outcome Patient Outcomes Assessments Pediatric Hospitals Psychometrics Publications Quality of life Quality-of-Life Assessment Rehabilitation Research Rehabilitation therapy Research Research Infrastructure Research Personnel Resources Sampling Sampling Studies Scientist Sensitivity and Specificity Site Spinal cord injury Staging System Testing Traumatic Brain Injury Universities Update Veterans Work age group design disability improved innovation instrument meetings operation programs public health relevance success young adult

项目摘要

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. PUBLIC HEALTH RELEVANCE: 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.

描述（由申请人提供）：现在广泛接受了儿童生活质量工具的设计和应用的观念。在某种程度上不清楚儿童设计的工具在哪个年龄就足够了，在哪个年龄的成年人可以信心使用。特定的研究需要直接关注儿童青春期成人过渡阶段期间生活质量评估的内容和格式，尤其是针对残疾儿童和年轻人。因此，波士顿大学（BU），凯斯勒医学康复研究与教育中心（KMRR）Promis 2 Wave 2研究站点的应用程序的主题是儿童和年轻人残疾人的专业人士。 BU/KMRR Promis Research网站将以这种为主题的重点，以各种各样的儿童和年轻的成人残疾条件评估当前的Promis儿童和成人物品库，并检查当前的儿童和成人Promis产品之间的联系。 BU/KMRR PROMIS研究网站将开发一个凝聚力的研究计划，该计划将涵盖童年和年轻人年龄段。我们的重点是残疾儿童和年轻人，以及如何适应生活质量评估以满足他们的需求。在项目＃1中，我们将研究当前的Promis物品银行对患有脑瘫的儿童和年轻人的响应能力，他们接受了主要的肌肉骨骼手术。项目＃2的目的是在当前的Promis小儿和成人物品库之间建立评分链接，以便可以在此儿童成年过渡期间使用类似的指标进行纵向使用Promis措施。采样计划中代表的主要儿童和成人状况包括儿童和年轻人患有脑瘫，脊髓损伤和脑外伤。在项目＃3中，我们将评估Promis物品银行的样本如何与年轻人合作，与来自Neuroqol Sci-Qol，Sci-Cat和TBI-Qol等免费项目开发的项目相关。公共卫生相关性：鉴于残疾儿童和年轻人的盛行以及有希望的新兴干预措施，在创新的Promis系统中需要适当的更新的生活质量评估来满足儿童和年轻人的需求。针对开发，测试和传播这些小组有效有效的Promis产品的研究可以改善临床研究。