Purpose: Communication disorders associated with Parkinson’s disease (PD) often lead to restricted participation in life roles, yet there is a limited understanding of influencing factors and few quantitative measurement tools available. This study aimed to identify variables associated with communicative participation in PD and to examine the relationship between the Communicative Participation Item Bank (CPIB) and existing health-related quality-of-life (HRQoL) measures. Method: Self-report data from 378 participants with PD from the US and New Zealand were analysed. Data included responses to the CPIB, PD Questionnaire-8, sub-scales of the Global Health instrument from the Patient Reported Outcomes Measurement Information System (PROMIS) and additional self-report instruments. Result: Greater perceived speech disorder, lower levels of speech usage, fatigue, cognitive and emotional problems and swallowing difficulties were associated with lower levels of communicative participation. Participants’ age significantly influenced findings, interacting with country of residence, sex and speech usage. Scores on the CPIB were moderately correlated with HRQoL measures. Conclusion: Communicative participation in PD is complex and influenced by both demographic and disease-based variables, necessitating a broader view of the communicative experiences of those with PD. Measurement of communicative participation as a separate construct to existing HRQoL measures is recommended.

Background: The term “communicative participation” refers to participation in the communication aspects of life roles at home, at work and in social and leisure situations. Participation in life roles is a key element in biopsychosocial frameworks of health, such as the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) and the Aphasia Framework for Outcomes Measurement. The Communicative Participation Item Bank (CPIB) was developed as a patient-reported measure of communicative participation for adults. Initial validation focused on adults with motor speech or voice disorders. No prior studies have conducted quantitative validation analyses for the CPIB for people with aphasia (PWA). Aims: The primary purpose of this study was to begin validation of the CPIB for PWA by conducting an analysis of differential item functioning (DIF). A DIF analysis was used to identify whether item parameters of the CPIB differed between PWA and the populations used in prior CPIB calibration. Secondary analyses evaluated the level of assistance needed by PWA to complete the CPIB, relationships between the CPIB and a gold-standard patient-reported instrument for PWA—American Speech-Language-Hearing Association Quality of Communication Life Scale (ASHA-QCL) and relationships between PWA and family proxy report on the CPIB. Methods & Procedures: This study included 110 PWA and 90 proxy raters. PWA completed a battery of patient-reported questionnaires in one face-to-face session. Speech-language pathologists provided communication support. Data on aphasia severity from the Western Aphasia Battery—Revised (WAB-R) and demographic data either existed from prior research or were collected during the session. Proxy raters completed a similar battery of self-report questionnaires. Outcomes & Results: Results of the DIF analysis suggested statistically significant DIF on two of the 46 items in the CPIB, but the DIF had essentially no impact on CPIB scores. PWA with WAB-R Aphasia Quotient scores above 80 appeared comfortable reading the CPIB items, although required occasional assistance. Most participants who were unable to complete the CPIB had WAB-R Aphasia Quotient scores lower than 50. Correlation between the CPIB and ASHA-QCL was moderate; and correlation between PWA and proxy scores was low. Conclusions: Most PWA were able to respond to CPIB items, although most required or requested support. Although these results are preliminary due to a small sample size, the data support that the CPIB may be valid for PWA. Caution is warranted regarding proxy report because of low correlation between PWA and proxy ratings.

Patient-reported outcome measures contain information that comes directly from the patient without interpretation by anyone else. These measures are an important part of a clinicians' arsenal of assessment approaches and are critical in the development of patient-centered approaches to intervention. In this introduction to patient-reported outcome measurement tools, a history is provided of this approach to measurement and its place within the context of clinical research and practice. The process of instrument development and application will be reviewed, along with examples of measurement tools from the field of neurological communication disorders. This introduction is supplemented by references that provide interested readers with more detailed information.

Communicative participation is restricted in many conditions associated with dysarthria. This position paper defines and describes the construct of communicative participation. In it, the emergence of this construct is reviewed, along with the predictors of and variables associated with communicative participation in the dysarthrias. In doing so, the features that make communicative participation unique and distinct from other measures of dysarthria are highlighted, through emphasizing how communicative participation cannot be predicted solely from other components of the World Health Organization’s International Classification of Functioning, Disability and Health (ICF), including levels of impairment or activity limitations. Next, the empirical literature related to the measurement of communicative participation and how this research relates to dysarthria management is presented. Finally, the development of robust clinical measures of communicative participation and approaches to management is described from the point of view of the clinician. We argue that communicative participation should be a primary focus of treatment planning and intervention to provide patient-centered, holistic, and value-based clinical interventions which are responsive to the needs of individuals living with dysarthria.