Measuring communicative participation in adults with communication disorders

描述(由申请人提供)：参与我们生活中的大多数角色需要与其他人交流。无论我们是在工作，照顾家人和家庭，还是和朋友一起放松，沟通都是实现我们需要和想要做的事情的关键组成部分。“交际性参与”一词指的是我们参与生活角色的交流方面。当沟通障碍干扰对生活角色的参与时，可能会产生许多负面后果，如失去就业机会、社会孤立、人际关系恶化，以及难以参与社区活动和医疗服务等资源。更好地了解影响沟通参与的变量将导致更有效的干预策略，以消除慢性沟通障碍患者参与生活的障碍。不幸的是，我们对交际参与和贡献变量之间的关系的理解非常有限，部分原因是缺乏测量这些结构的工具。我们需要更好的科学工具来进行交往参与的实证研究。这笔赠款的目的是促进交流参与的一项衡量标准--交流参与项目库--的发展。试题库目前由130多个候选项目组成，这些项目在单个人群-痉挛性发音困难中进行了定性和定量的心理测量测试。这笔赠款针对题库开发的关键下一步，方法是(1)对多个沟通障碍组(痉挛性发音困难、多发性硬化症、肌萎缩侧索硬化症和喉癌)进行心理测量分析，并生成一个核心题库，题项在各沟通障碍组之间具有心理测量学不变性；(2)为题库的临床和研究应用开发一套有针对性的简短表格；以及(3)将交流参与的衡量标准与目前衡量疾病严重程度和与健康相关的生活质量的常见衡量标准进行比较，作为题库有效性测试的一部分。建立题库的方法来自NIH患者报告结果测量信息系统(PROMIS)，重点是使用项目反应理论(IRT)进行统计分析。这项研究的长期目标是：(1)通过开发有意义的和心理测量学上合理的沟通参与措施，促进与沟通障碍相关的自我报告结果的科学研究；以及2)实施通过这项研究获得的知识，以改善沟通障碍患者的临床结果，特别是在他们履行其生活角色和目标的能力和机会方面。 与公共健康相关：患有沟通障碍的人面临各种障碍，这些障碍往往使他们无法履行许多生活角色，如维持就业、照顾家庭和家庭，以及为社区活动做出贡献。言语病理干预的目标之一是帮助沟通障碍患者更充分和更容易地参与各种生活活动，但由于缺乏专门针对沟通障碍对生活参与的影响而设计的临床和研究工具，这项工作受到了阻碍。这项研究的重点是开发工具，言语病理学家可以用来更好地了解沟通障碍对客户生活参与的影响，从而消除沟通障碍患者参与的障碍。

DESCRIPTION (provided by applicant): Participation in most of our life roles requires communicating with other people. Whether we are at work, taking care of our families and households, or relaxing with friends, communication is a key component to achieving what we need and want to do. The term "communicative participation" refers to the communication aspects of our involvement in our life roles. When communication disorders interfere with participation in life roles, many negative consequences may follow such as loss of employment opportunities, social isolation, deterioration of personal relationships, and difficulty engaging with community activities and resources such as healthcare services. Better understanding of the variables that influence communicative participation would lead to more effective intervention strategies to remove barriers to life participation for people with chronic communication disorders. Unfortunately, our understanding of communicative participation and the relationships among contributing variables is very limited, partly because of the lack of instruments available for measuring these constructs. We need better scientific instruments for conducting empirical investigations of communicative participation. The purpose of this grant is to advance development that is underway on a measure of communicative participation - the Communicative Participation Item Bank. The item bank currently consists of a set of over 130 candidate items that have undergone qualitative and quantitative psychometric testing in a single population - spasmodic dysphonia. This grant addresses the critical next steps in development of the item bank by (1) conducting psychometric analyses across multiple communication disorder groups (spasmodic dysphonia, multiple sclerosis, amyotrophic lateral sclerosis, and laryngeal cancer) and generating a core item bank with items that are psychometrically invariant across communication disorders; (2) developing one set of targeted short forms for clinical and research applications of the item bank; and (3) comparing measures of communicative participation to current common measures of disease severity and health-related quality of life as part of validity testing of the item bank. The methodology for creating the item bank is adopted from the NIH Patient-Reported Outcomes Measurement Information System (PROMIS) and focuses on the use of Item Response Theory (IRT) for statistical analyses. The long-term goals of this research are to: (1) Advance the science of self-reported outcomes related to communication disorders by developing meaningful and psychometrically sound measures of communicative participation; and 2) Implement the knowledge gained through this research to improve clinical outcomes for people with communication disorders, particularly with regards to their abilities and opportunities to fulfill their life roles and goals. PUBLIC HEALTH RELEVANCE: People with communication disorders face a variety of barriers that often leave them unable to fulfill many life roles such as maintaining employment, caring for family and households, and contributing to community activities. One of the goals of speech pathology intervention is to help people with communication disorders participate in a variety of life activities more fully and easily, but this work is hampered by a lack of clinical and research tools specifically designed for addressing the impact of communication disorders on life participation. This research focuses on development of tools that speech pathologists can use to better understand the impact of communication disorders on their clients' life participation, and then to remove barriers to participation for people with communication disorders.