The Patient-Reported Outcomes Measurement Information System (PROMIS) Progress of an NIH roadmap cooperative group during its first two years
The Patient-Reported Outcomes Measurement Information System (PROMIS) Progress of an NIH roadmap cooperative group during its first two years
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DOI：
10.1097/01.mlr.0000258615.42478.55
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发表时间：
2007-05-01
期刊：
影响因子：
3
通讯作者：
Rose, Mattias
中科院分区：
文献类型：
--
作者：
Cella, David;Yount, Susan;Rose, Mattias
背景：美国国立卫生研究院(NIH)患者报告结果测量信息系统(PROMIS)路线图倡议(www.nihpromis.org)是一个为期5年的合作小组研究计划，旨在开发、验证和标准化题库，以衡量与常见疾病相关的患者报告结果(PRO)。在本文中，我们将总结PROMIS网络头两年的组织和科学活动。设计：该网络由6个主要研究站点(PRSS)、一个统计协调中心(SCC)和NIH研究科学家组成。该网络由一个指导委员会管理，分为职能小组委员会和工作组。在第一年，我们创建了一个项目库，并激活了3个交互协议：领域映射、档案数据分析和定性项目审查(QIR)。在第二年，我们开发并启动了涵盖5个广泛领域的自我报告健康的题库测试。结果：领域映射过程建立在世界卫生组织(WHO)身体、心理和社会健康框架之上。从这个框架中，疼痛、疲劳、情绪困扰、身体功能、社会角色参与和全球健康认知被选为第一波测试。基于项目反应理论(IRT)的分析对I大数据集进行补充，并对项目库中可用指标中的近7000个项目进行项目级别的定性审查。在对普通人群和目标患者人群进行第一轮测试之前，选择了要重写或创建的项目，并进行了进一步的详细审查。结论：NIH PROMIS网络得出了一个基于共识的自我报告健康框架，系统地审查了解决初始PROMIS领域的现有工具和数据集。定性项目研究引发了网络测试的第一波浪潮，这波浪潮始于第二年。
Background: The National Institutes of Health (NIH) Patient-Reported Outcomes Measurement Information System (PROMIS) Roadmap initiative (www.nihpromis.org) is a 5-year cooperative group program of research designed to develop, validate, and standardize item banks to measure patient-reported outcomes (PROs) relevant across common medical conditions. In this article, we will summarize the organization and scientific activity of the PROMIS network during its first 2 years.Design: The network consists of 6 primary research sites (PRSs), a statistical coordinating center (SCC), and NIH research scientists. Governed by a steering committee, the network is organized into functional subcommittees and working groups. In the first year, we created an item library and activated 3 interacting protocols: Domain Mapping, Archival Data Analysis, and Qualitative Item Review (QIR). In the second year, we developed and initiated testing of item banks covering 5 broad domains of self-reported health.Results: The domain mapping process is built on the World Health Organization (WHO) framework of physical, mental, and social health. From this framework, pain, fatigue, emotional distress, physical functioning, social role participation, and global health perceptions were selected for the first wave of testing. Item response theory (IRT)-based analysis of I I large datasets supplemented and informed item-level qualitative review of nearly 7000 items from available PRO measures in the item library. Items were selected for rewriting or creation with further detailed review before the first round of testing in the general population and target patient populations.Conclusions: The NIH PROMIS network derived a consensus-based framework for self-reported health, systematically reviewed available instruments and datasets that address the initial PROMIS domains. Qualitative item research led to the first wave of network testing which began in the second year.