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

项目描述（由申请人提供）：本项目的总体目标是在4种儿童慢性疾病中验证PROM IS儿童信息库，并将儿童和成人信息库连接起来。在第一个PROMIS资助周期中，我们开发了9个儿科物品库，并对患有几种慢性疾病的儿童进行了横断面测试。拟议的工作是将PROMIS量表整合到临床研究中的自然下一步。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。每一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转变，每一项研究都将检查PROMIS工具的响应性，并估计儿童的最小重要差异（MID）。作为这些研究的一部分，我们提议测试一种建立MID的新方法，并将该方法与传统的分布和基于锚点的方法进行比较。第二个总体目标是将PROMIS儿童项目银行与PROMIS成人项目银行联系起来。我们设计了大多数儿童银行来衡量与成人银行相同的潜在特征（例如，疲劳），但使用了儿童的概念和语言。我们将通过横断面数据收集对患有慢性疾病的青少年进行儿科和成人简短表格的管理。为此，我们将使用因子分析和结构方程模型来建立儿童和成人题库和领域之间的经验关系，并在这些关系支持的程度上，使用项目反应理论来连接儿童和成人题库。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较的分数，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：对4种慢性疾病进行纵向效度研究将为PROMIS在未来临床研究中的应用做准备。通过将儿童和成人的信息库连接起来，我们将加快对影响儿童和成人的疾病的研究，使研究人员能够研究从童年到成年与健康有关的生活质量的轨迹。

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.