Communication is essential to most of our daily activities. The term "communicative participation" refers to the fulfillment of the communication aspects of our life roles including employment, household management, and relationships. Adults with chronic speech or voice disorders often face significant restrictions in their communicative participation. Traditionally, speech-language pathologists (SLPs) have followed the pattern of most healthcare disciplines in terms of attempting to alleviate disability by treatig the impairment/activity limitations (speech intelligibility/voice quality). Although many impairment/activity-based interventions have been shown to be effective and will continue to hold an essential place in clinical practice, clinical and research evidence shows that standard interventions often do not return speech function to normal, and many people are left with longstanding communication disorders and pervasive problems participating in daily activities. Disability is now envisioned as a biopsychosocial phenomenon with participation shaped by many social and environmental variables as well as physical impairment. With this conceptual shift, some groups in the speech- language pathology field are advocating that interventions take a more 'participation-focused'approach to address impairment, environmental and personal barriers to participation. There are many questions;however, regarding how well standard interventions help individuals meet their participation goals, what participation needs remain unmet after standard interventions, and what variables would be included in participation- focused interventions to produce the most meaningful outcomes for clients. The field has lacked valid and reliable instruments to measure participation outcomes, and this has severely limited the development of empirical models of participation to guide research and clinical directions. This team has developed a self- report outcomes measure for communicative participation- the Communicative Participation Item Bank (CPIB) which has been validated in five motor speech/voice populations. The CPIB draws on methods implemented by the NIH PROMIS (Patient-Reported Outcomes Measurement Information System) program, including using Item Response Theory (IRT) and adaptive testing to maximize instrument relevance, precision and accessibility. Using these new measurement capabilities, this longitudinal study compares changes in communicative participation in groups receiving standard treatments known to improve speech/voice function to participation in chronic groups with stable disorders. Physical (speech severity, fatigue, depression, health), environmental (social support, social networks), and personal (demographic, speech needs, self-efficacy) variables will be measured to identify key mechanisms influencing participation outcomes. This project includes four speech/voice disorders (dysarthria due to Parkinson's disease, unilateral vocal fold immobility, spasmodic dysphonia, and motor speech disorders due to stroke;n=175) to investigate variables for future participation- focused interventions across the range of speech/voice disorders.
Adults with chronic speech and voice disorders are often unable to participate in and fulfill their roles in employment, household management, relationships and community activities. This research project utilizes new innovations in self-report measurement instruments developed by this team to provide scientific knowledge needed by speech-language pathologists to understand, evaluate and ameliorate the participation restrictions faced by adults with chronic neurologic speech and voice disorders.