Pediatric PROMIS: Advancing the Measurement and Conceptualizaiton of Child Health

描述(申请人提供)：健康包括抵抗疾病、适应需求和疾病以及蓬勃发展所必需的资源。对于儿童来说，健康是参与越来越具有挑战性的活动的基础，这些活动可以刺激身体、认知和社会发展。目前，对于儿科临床研究和实践，我们缺乏一套共同的、跨越疾病类别和年龄范围的患者报告的结果衡量标准。为成年人开发的工具不太可能捕捉到由于发展变化而产生的童年现实，而且它们通常不适合阅读理解和回答负担。拟议项目的目标是开发儿童感知健康的新衡量标准--儿童版和家长答复版--这些衡量标准的基础是一种全面的、基于共识的、了解发展的、对儿童敏感的健康模式。具体地说，我们的目标是：(1)在现有的PROMIS框架内概念化和整合新的儿科感知健康结构，包括体力活动、身体舒适/症状、压力体验、主观幸福感、家庭归属感和学校归属感；(2)为这些健康结构开发儿科项目库；(3)校准、验证和发展等同于5,000个父母/孩子二人组的项目库；以及(4)对400名炎症性肠病(IBD)儿童进行PROMIS题库的临床验证研究。我们将使用 文献审查、次级数据分析、重点小组和国际/跨文化共识发展进程，以扩大PROMIS的概念框架，确保其对儿童的独特特征敏感。数据将在全国最大的两个儿科综合交付系统和几个学校系统收集。一个关键的创新是我们对儿童发展的关注，一种将灌输给儿童健康概念的敏感性，对题库发展的定性方法，以及用于分析发展变化的统计方法。我们的儿童健康专家和儿科感知健康工具开发者团队在儿童和青少年健康和疾病的概念化和衡量方面做出的贡献可以说比世界上任何其他群体都要大。 公共卫生相关性：这项研究将极大地扩大适合发展的儿科患者报告结果工具的可用性。一旦存在这些，就有可能评估不同发育阶段的健康状况，最终评估生命周期，这项工作将极大地促进儿科临床试验的科学，告知我们对儿童疾病的理解，并阐明儿科保健以前未知的影响。

DESCRIPTION (provided by applicant): Health comprises resources necessary for resisting illness, adapting to demands and disease, and flourishing. For children, health is the foundation for engaging in increasingly challenging activities that stimulate physical, cognitive, and social development. Currently, we lack a common set of patient-reported outcome measures that span disease categories and age ranges for pediatric clinical research and practice. Instruments developed for adults are unlikely to capture the realities of childhood that result from developmental change, and they typically are not suitable in terms of reading comprehension and respondent burden. The goal of the proposed project is to develop novel measures of children's perceived health-child and parent respondent editions-that are based in a comprehensive, consensus-derived, developmentally informed, child-sensitive model of health. Specifically, our aims are to: (1) conceptualize and integrate within the existing PROMIS framework the novel pediatric perceived health constructs of physical activity, physical comfort/symptoms, experience of stress, subjective well-being, family belonging, and school belonging; (2) develop pediatric item pools for these health constructs; (3) calibrate, validate, and developmentally equate the item pools among 5,000 parent/child dyads; and, (4) perform a clinical validation study of PROMIS item banks among 400 children with inflammatory bowel disease (IBD). We will use literature reviews, secondary data analyses, focus groups, and an international/cross-cultural consensus development process to expand the PROMIS conceptual framework to ensure it is sensitive to the unique characteristics of children. Data will be collected at two of the nation's largest pediatric integrated delivery systems and several school systems. A key innovation is our focus on children's development, a sensitivity that will imbue the conceptualization of child health, qualitative approaches to item pool development, and statistical methods for analyzing developmental change. Our team of child health experts and pediatric perceived health instrument developers has arguably contributed more to the conceptualization and measurement of health and disease in childhood and adolescence than any other group in the world. PUBLIC HEALTH RELEVANCE: This research will greatly expand the availability of developmentally appropriate pediatric patient-reported outcome tools. Once these exist, it will be possible to evaluate health across developmental periods and ultimately the lifespan, work that will dramatically advance the science of pediatric clinical trials, inform our understanding of childhood disease, and elucidate previously unknown effects of pediatric healthcare.