Variables associated with communicative participation in Parkinson’s disease and its relationship to measures of health-related quality-of-life

Abstract

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.

Keywords:

• Communication
• Parkinson’s disease
• participation
• quality-of-life
• speech

Acknowledgement

This study was made possible by funding from the National Institute on Deafness and Other Communication Disorders (Grant 1R03DC010044; principal investigator Carolyn Baylor) and the New Zealand Institute of Language, Brain and Behaviour Small Project Grants (principal investigator Megan McAuliffe). We thank participants for their time and efforts completing in this study. We would also like to acknowledge student research assistants in the US who assisted with data collection, Christina Grey and Brittney Skrupky and the Washington Parkinson’s Disease Registry at the University of Washington. We thank Parkinson’s New Zealand, Professor Tim Anderson and speech therapists from district health boards that provided assistance with participant recruitment across NZ. We thank Louise Hughes for her contributions to data collection and analysis.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper. This study received funding from the National Institute on Deafness and Other Communication Disorders (Grant 1R03DC010044; principal investigator Carolyn Baylor), and NZILBB funding grant (McAuliffe).

Notes

1 In keeping with the Journal convention, the term “speech-language pathologist” is used throughout.

2 The NeuroQoL items were selected and used with permission for this study before the NeuroQoL instruments were finalised; hence the scoring format used for this custom item set is different than the now-published NeuroQoL forms and scoring.

3 All three examples relate to questions from the NeuroQol Item Bank (see www.neuroqol.org).