Measuring communicative participation in adults with communication disorders

描述（由申请人提供）：参与我们大部分的生活角色需要与他人沟通。无论我们是在工作，照顾家人和家庭，还是与朋友放松，沟通都是实现我们需要和想要做的事情的关键组成部分。“沟通参与”一词指的是我们参与生活角色的沟通方面。当沟通障碍妨碍了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、个人关系恶化以及难以参与社区活动和资源（如医疗保健服务）。更好地了解影响交际参与的变量将导致更有效的干预策略，以消除慢性交际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，部分原因是缺乏可用的工具来测量这些结构。我们需要更好的科学工具来进行交际参与的实证调查。这项赠款的目的是促进正在进行的交流参与措施的发展-交流参与项目库。该题库目前包括一组超过130个候选项目，这些项目在一个单一的人群中进行了定性和定量的心理测量测试-痉发性语音障碍。该基金通过(1)对多个沟通障碍群体（痉挛性语音障碍、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，并生成一个核心项目库，其中的项目在心理测量上在沟通障碍中是不变的；(2)开发一套有针对性的题库临床和研究应用短表；(3)比较交流参与的措施与目前常见的疾病严重程度和健康相关生活质量的措施，作为项目库效度测试的一部分。创建题库的方法采用了美国国立卫生研究院患者报告结果测量信息系统（PROMIS），并侧重于使用项目反应理论（IRT）进行统计分析。本研究的长期目标是：(1)通过开发有意义的、心理测量学上合理的沟通参与测量方法，推进与沟通障碍相关的自我报告结果的科学；2)运用通过本研究获得的知识来改善沟通障碍患者的临床结果，特别是在他们实现其生活角色和目标的能力和机会方面。

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.