Pediatric PROMIS: Advancing the Measurement and Conceptualizaiton of Child Health

儿科 PROMIS：推进儿童健康的测量和概念化

• 批准号: 8131706
• 负责人: CHRISTOPHER B FORREST
• 金额: $ 96.94万
• 依托单位: CHILDREN'S HOSP OF PHILADELPHIA
• 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/8131706
• 关键词: Adolescence; Adult; Age; Categories; Characteristics; Child; Child Development; Child health care; Childhood; Clinical; Clinical Research; Clinical Trials; Cognitive; Comprehension; Consensus; Consensus Development; Data; Data Analyses; Development; Disease; Ensure; Family; Focus Groups; Foundations; Goals; Health; Healthcare; Inflammatory Bowel Diseases; Integrated Delivery Systems; International; Longevity; Measurement; Measures; Modeling; Outcome Measure; Parents; Patient Outcomes Assessments; Personal Satisfaction; Physical activity; Process; Reading; Research; Resources; Respondent; Review Literature; Schools; Science; Social Development; Statistical Methods; Stress; Symptoms; System; Work; base; clinical practice; experience; innovation; instrument; novel; public health relevance; tool; validation studies

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.

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繁荣的必要资源。对于儿童而言，健康是从事越来越具有挑战性的活动的基础，这些活动刺激了身体，认知和社会发展。目前，我们缺乏一组常见的患者报告的结果指标，这些指标涵盖了疾病类别和小儿临床研究和实践的年龄范围。为成年人开发的工具不太可能捕捉由于发展变化而导致的童年现实，并且通常不适合阅读理解和受访者负担。拟议项目的目的是制定儿童感知到的健康孩子和家长受访者版本的新颖衡量标准 - 该版本以全面的，共识的，发育的知情，对儿童敏感的健康模型为基础。具体而言，我们的目的是：（1）概念化和整合在现有的Promis框架内，新的儿科感知到了体育锻炼的健康结构，身体舒适/症状，压力的经验，主观幸福感，家庭归属和学校归属； （2）为这些健康结构开发儿科项目池； （3）在5,000个父/子二元组中校准，验证和发育等同于5,000个项目池； （4）对400名炎症性肠病（IBD）儿童中的Promis物品库进行临床验证研究。我们将使用 文献综述，次要数据分析，焦点小组和国际/跨文化共识发展过程，以扩大Promis概念框架，以确保其对儿童的独特特征敏感。数据将在美国两个最大的小儿综合递送系统和几个学校系统中收集。一个关键的创新是我们对儿童发展的关注，这是一种敏感性，它将掩盖儿童健康的概念化，项目池开发的定性方法以及分析发展变化的统计方法。我们的儿童健康专家团队和儿科感知的健康仪器开发人员可以说，与世界上任何其他群体相比，儿童和青春期的健康和疾病的概念化和衡量更大。 公共卫生相关性：这项研究将大大扩展适当的儿科患者报告的结果工具的可用性。一旦存在，就可以在整个发育时期和最终的寿命中评估健康，这将极大地推进小儿临床试验的科学，以告知我们对儿童疾病的理解，并阐明了儿科医疗保健的先前未知的影响。