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.