PROMIS Pediatrics: Longitudinal Validation and Linking Pediatric and Adult Item B

PROMIS 儿科：纵向验证以及链接儿科和成人项目 B

• 批准号: 7944072
• 负责人: DARREN A DEWALT
• 金额: $ 96.49万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 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 2013-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7944072
• 关键词: Abbreviations; Acute; Adolescent; Adult; Affect; Asthma; Child; Child Language; Child health care; Childhood; Childhood Asthma; Chronic Disease; Clinical; Clinical Research; Clinical and Translational Science Awards; Communication; Data Collection; Disease; Disease remission; Equation; Evaluation; Factor Analysis; Fatigue; Florida; Focal Segmental Glomerulosclerosis; Future; Grant; Health Policy; Health Status; Link; Longitudinal Studies; Malignant Neoplasms; Measures; Medical center; Methods; Modeling; Nephrology; Nephrotic Syndrome; North Carolina; Pain; Patient Outcomes Assessments; Pediatric Hospitals; Pediatrics; Principal Investigator; Quality of life; Questionnaires; Recovery; Relapse; Research; Research Personnel; Sickle Cell Anemia; State Children' s Health Insurance Program; Testing; Universities; Validation; Work; base; chemotherapy; design; health related quality of life; instrument; novel; public health relevance; response; theories; trait

DESCRIPTION (provided by applicant): The overall objectives of this project are to validate the PROM IS pediatric item banks in 4 pediatric chronic illnesses, and to link pediatric and adult item banks. We developed 9 pediatric item banks during the first PROMIS grant cycle and have performed cross-sectional testing in children with several chronic illnesses. The proposed work is the natural next step toward integration of PROMIS scales into clinical research. We propose longitudinal studies in children with asthma, cancer, nephrotic syndrome, and sickle cell disease. Each study follows children through a clinical transition known to affect health-related quality of life, and each study will examine the responsiveness of the PROMIS instruments and estimate the minimum important difference (MID) for children. As part of these studies, we have proposed to test a new method for establishing MID and to compare that method with traditional distributional and anchor-based methods. The second overall objective is to link PROMIS pediatric item banks with PROMIS adult item banks. We designed most of the pediatric banks to measure the same underlying trait as their counterpart adult banks (e.g., fatigue), but used the concepts and language of children. We will administer pediatric and adult short forms to adolescents with chronic illnesses with a cross-sectional data collection. For this objective, we will use factor analysis and structural equation modeling to establish the empirical relationships between the pediatric and adult item banks and domains, and, to the extent supported by those relationships, use item response theory to link the pediatric and adult item banks. This study will enable researchers to have comparable scores between children and adults participating in the same study and enable longitudinal studies that follow children into adulthood. PUBLIC HEALTH RELEVANCE: Performing longitudinal validity studies in 4 chronic illnesses will prepare PROMIS for use in future clinical research. By linking the pediatric and adult item banks, we will accelerate research on diseases that affect both children and adults and enable researchers to study trajectory of health-related quality of life from childhood to adulthood.

描述（由申请人提供）：本项目的总体目标是在4种儿科慢性疾病中验证PROM IS儿科项目库，并连接儿科和成人项目库。我们在第一个PROMIS资助周期开发了9个儿科项目库，并在患有多种慢性疾病的儿童中进行了横断面测试。拟议的工作是自然的下一步PROMIS量表整合到临床研究。我们建议对患有哮喘、癌症、肾病综合征和镰状细胞病的儿童进行纵向研究。每项研究都跟踪儿童经历一个已知会影响健康相关生活质量的临床过渡期，每项研究都将检查PROMIS工具的反应性，并估计儿童的最小重要差异。作为这些研究的一部分，我们提出了一种新的方法来测试建立MID，并比较该方法与传统的分布式和基于锚点的方法。第二个总体目标是将PROMIS儿科项目库与PROMIS成人项目库连接起来。我们设计了大多数儿童银行，以衡量与成人银行相同的潜在特征（例如，疲劳），但使用儿童的概念和语言。我们将管理儿童和成人的简短形式，以青少年与慢性疾病的横断面数据收集。为了这个目标，我们将使用因子分析和结构方程模型来建立儿童和成人的项目银行和域之间的经验关系，并在一定程度上支持这些关系，使用项目反应理论链接儿童和成人的项目银行。这项研究将使研究人员能够在参与同一项研究的儿童和成人之间获得可比的分数，并使跟踪儿童到成年的纵向研究成为可能。公共卫生相关性：在4种慢性疾病中进行纵向有效性研究将为PROMIS在未来的临床研究中使用做好准备。通过连接儿科和成人项目库，我们将加快对影响儿童和成人的疾病的研究，并使研究人员能够研究从儿童到成年的健康相关生活质量的轨迹。