Assessing Patients and Care Partner Ratings of Communication-Related Participation Restrictions: Insights From Degenerative Disease

Abstract

Purpose: Prior studies have shown that communication-related participation restrictions in patients with degenerative disease do not always match clinician judgment or objective indices of symptom severity. Although there is a growing body of literature documenting that discrepancies between patients with dementia and their care partners' perception of participation restrictions exist, it is not known how care partner perceptions of communication participation restrictions specifically match or diverge from the patients' experiences, which may inform the use of care partner proxy in the context of degenerative diseases. Method: Thirty-eight patients with progressive neurologic conditions (progressive supranuclear palsy, corticobasal syndrome, and primary progressive aphasia or apraxia of speech) and, in most instances, focal cognitive-communication disorders were included. The patients and their accompanying care partners independently completed the Communicative Participation Item Bank, short form, a 10-question survey about communication participation restrictions in different contexts. Care partners were instructed to complete the form with their perception of the patient's experience. The difference between patient and care partner total scores were calculated and analyzed relative to clinical and demographic variables of interest. Results: Care partner ratings modestly tracked with patient experience and objective indices of symptom severity but did not exactly match patient ratings. The presence of aphasia increased, but did not fully account for, the likelihood of a discrepancy between care partner and patient ratings. Conclusion: Although careful consideration should be given prior to using care-partner report as a proxy for patient experience, it is worthwhile to include care partner ratings as a means of supporting conversations about differing perceptions, guiding joint intervention planning, and monitoring care-partner perceptions of change along with the implementation of supported conversation strategies.

Communicative participation outcomes in individuals with Parkinson's disease receiving standard care speech‐language therapy services in community settings

“…This study also supports prior studies with other populations showing that the CAT form of the CPIB provides measurement efficiency by using a smaller number of items to obtain commensurate scores to the static General Short Form (Baylor, Merati, et al., 2021). The findings regarding proxy raters differed from prior studies exploring CPIB proxy ratings with people with aphasia (Baylor et al., 2017) or non‐Parkinson's degenerative conditions (Utianski et al., 2023) in which larger group differences between self‐ and proxy raters were found. However, given the wide range of differences between scores in some individual self‐ and proxy‐rater pairs in the current study, the lack of significant differences at the group level may be misleading.…”