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）

• 批准号: 8705684
• 负责人: ALAN Maurice JETTE
• 金额: $ 13.5万
• 依托单位: BOSTON UNIVERSITY MEDICAL CAMPUS
• 依托单位国家: 美国
• 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/8705684
• 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; success; young adult

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.

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，这一观点现已被广泛接受。目前尚不清楚儿童设计的乐器在什么年龄就足够了，而成人 PRO 在什么年龄可以放心使用。具体研究需要直接关注儿童-青少年-青少年过渡阶段生活质量评估的内容和形式，特别是针对残疾儿童和青少年。因此，波士顿大学 (BU)、凯斯勒医疗康复研究与教育中心 (KMRR) PROMIS Wave 2 研究站点应用的主题是针对残疾儿童和青少年的 PRO。以此主题为重点，BU/KMRR PROMIS 研究站点将评估当前的 PROMIS 儿童和成人项目库，涵盖广泛的儿童和青少年残疾状况，并检查当前儿童和成人 PROMIS 产品之间的联系。 BU/KMRR PROMIS 研究中心将开发一个涵盖儿童和青年年龄组的有凝聚力的研究计划。我们的重点将是残疾儿童和青少年，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 项目库对接受大型肌肉骨骼手术的脑瘫儿童和年轻人的反应能力。项目 #2 的目的是在当前的 PROMIS 儿科和成人项目库之间建立评分链接，以便在儿童到成人过渡期间可以使用类似的指标纵向使用 PROMIS 测量。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年轻人。在项目 #3 中，我们将评估 PROMIS 项目库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相关。

项目成果

Differential item functioning in the Patient Reported Outcomes Measurement Information System Pediatric Short Forms in a sample of children and adolescents with cerebral palsy.

• DOI: 10.1111/dmcn.13138
• 发表时间: 2016-11
• 期刊: Developmental medicine and child neurology
• 影响因子: 3.8
• 作者: Coster WJ;Ni P;Slavin MD;Kisala PA;Nandakumar R;Mulcahey MJ;Tulsky DS;Jette AM
• 通讯作者: Jette AM

Ability of PROMIS Pediatric Measures to Detect Change in Children With Cerebral Palsy Undergoing Musculoskeletal Surgery.

• DOI: 10.1097/bpo.0000000000000533
• 发表时间: 2016-10
• 期刊: Journal of pediatric orthopedics
• 作者: Mulcahey MJ;Haley SM;Slavin MD;Kisala PA;Ni P;Tulsky DS;Jette AM
• 通讯作者: Jette AM

Measuring depression after spinal cord injury: Development and psychometric characteristics of the SCI-QOL Depression item bank and linkage with PHQ-9.

脊髓损伤后抑郁症的测量：SCI-QOL 抑郁症项目库的发展和心理测量特征以及与 PHQ-9 的联系。

• DOI: 10.1179/2045772315y.0000000020
• 发表时间: 2015
• 期刊: The journal of spinal cord medicine
• 作者: Tulsky,DavidS;Kisala,PamelaA;Kalpakjian,ClaireZ;Bombardier,CharlesH;Pohlig,RyanT;Heinemann,AllenW;Carle,Adam;Choi,SeungW
• 通讯作者: Choi,SeungW