Pediatric PROMIS: Advancing the Measurement and Conceptualizaiton of Child Health

描述（由申请人提供）：健康包括抵抗疾病，适应需求和疾病以及蓬勃发展所需的资源。对儿童来说，健康是从事日益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，我们缺乏一套通用的患者报告的结果指标，跨越疾病类别和年龄范围的儿科临床研究和实践。为成年人开发的工具不太可能捕捉到儿童时期因发展变化而产生的现实，而且它们在阅读理解和应答负担方面通常不合适。拟议项目的目标是开发新的措施，儿童和家长的健康感知版本，是基于一个全面的，共识的，发展知情，儿童敏感的健康模式。具体来说，我们的目标是：（1）概念化和现有的PROMIS框架内的身体活动，身体舒适/症状，压力的经验，主观幸福感，家庭归属感，和学校归属感的新儿科感知健康结构的整合;（2）开发这些健康结构的儿科项目池;（3）校准、验证和发展等同5，000个父母/孩子二元组中的项目库;以及（4）在400名患有炎症性肠病（IBD）的儿童中进行PROMIS项目库的临床验证研究。我们将使用 文献综述、二级数据分析、焦点小组和国际/跨文化共识发展进程，以扩大PROMIS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专注于儿童的发展，一个敏感性，将灌输儿童健康的概念化，定性方法项目池的发展，和统计方法分析发展变化。我们的儿童健康专家和儿科感知健康工具开发人员团队可以说比世界上任何其他团体都对儿童和青少年健康和疾病的概念化和测量做出了更多的贡献。 公共卫生相关性：这项研究将极大地扩展适用于发展的儿科患者报告结局工具的可用性。一旦这些存在，就有可能评估整个发育时期的健康状况，并最终评估寿命，这项工作将大大推进儿科临床试验的科学，告知我们对儿童疾病的理解，并阐明儿科医疗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.