Measuring communicative participation in adults with communication disorders

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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.