The impact of dysarthria on communicative participation in people with ALS

一、项目概况

I. Project Summary Successful social interactions and strong social connection are critical to well-being and quality of life. The significant need for more research on social connectedness and its impact on health has been acknowledged recently by calls to elevate the wide-spread problem of social disconnection to a public health crisis. Many individuals with neuromotor speech impairment, such as people with amyotrophic lateral sclerosis (ALS), experience restrictions in communicative participation (reduced engagement in day-to-day communication) that places them at risk for social disconnection. The impact of speech impairment on communicative participation has been understudied, even though such information is essential for developing interventions that target improving social connection. The problem has not been addressed, in part, because of barriers to research participation experienced by individuals with neuromotor impairments. Recently developed mobile platforms now make this important research convenient and feasible by improving accessibility. The long-term goal of this work is to facilitate the communicative participation and social connection, and therefore improve quality of life, of individuals with neurodegenerative diseases such as ALS. Sixty people with ALS and thirty healthy controls will participate in this project that employs an innovative mobile health (mHealth) approach that leverages the ubiquity of smartphone ownership with existing mobile technology deployed for medical research. Participants will use their own smartphone to acquire actively generated data (surveys and speech recordings) and passively acquired data (call logs, text logs, and GPS). The mHealth approach is uniquely suited to the research questions and to people with ALS, given that it is convenient, minimally invasive, and can provide remote and frequent data collection. This approach will be used to identify the atypical speech characteristics that limit communicative participation in people with ALS (Aim 1). It will further determine the validity of passive smartphone data (communication logs and GPS) as quantitative indicators of communicative participation in people with and without ALS (Aim 2). The goals of this work are to (1) identify the attributes of impaired speech that limit communicative participation in people with ALS, (2) address the need for objective indices for monitoring communicative participation, and (3) remove previous barriers to monitoring communicative participation using mHealth monitoring technology. Completion of these specific aims will yield novel tools for monitoring social connection and provide a better understanding of the communicative participation challenges experienced by individuals with neuromotor speech impairment. This knowledge is critical for maximizing social connection, and therefore health and quality of life outcomes, for individuals with neurodegenerative diseases such as ALS.