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.

Figure 1.

Left: Signed difference scores on patient and care partner Communicative Participation Item Bank total ratings for the whole cohort (bottom row) and relative to the presence/absence of aphasia, as well as apraxia of speech (AOS) and/or dysarthria; individual patients might be present in multiple rows. Intraclass correlation coefficient is noted for each subgroup. Right: Raw total scores made by care partners plotted against patient raw total scores.

Figure 2.

Signed difference scores on patient and care partner Communicative Participation Item Bank ratings for each individual item. Intraclass correlation coefficient is noted for each question, where the patient and care partner were asked to rate how they judged the condition to interfere with (1) talking with people you know? (2) communicating when you need to say something quickly? (3) talking with people you do not know? (4) communicating when you are out in your community? (5) asking questions in a conversation? (6) communicating in a small group of people? (7) having a long conversation with someone you know about a book, movie, show or sports event? (8) giving someone detailed information? (9) getting your turn in a fast-moving conversation? and (10) trying to persuade a friend or family member to see a different point of view?

Figure 3.

Patient responses plotted against the discrepancy between patient–care partner ratings for each question (see Figure 2 caption, for questions).

Figure 4.

Difference scores for patient and care partner Communicative Participation Item Bank (CPIB) total ratings relative to Western Aphasia Battery–Aphasia Quotient (WAB-AQ) (where higher scores are less impaired). The presence/absence of aphasia is indicated by color. One patient's WAB-AQ was 79.6; they were judged to have nonaphasic cognitive communication deficits (rather than a focal language impairment) that account for performance.

Figure 5.

Difference scores for patient and care partner total ratings relative to motor speech disorder severity scale score and Apraxia of Speech Rating Scale–]Version (ASRS-3) total score, where higher scores are more impaired. MSD = motor speech disorder.

Figure 6.

Visualization of difference in patient and care partner Communicative Participation Item Bank total ratings relative to patient age, disease duration, and gender.

Figure 7.

Differences in patient and care partner Communicative Participation Item Bank total ratings relative to whether speech was the predominant neurological symptom.

Figure 8.

Differences in patient and care partner Communicative Participation Item Bank total ratings relative to patient Montreal Cognitive Assessment (MoCA; where higher scores are less impaired) and Frontal Assessment Battery (FAB) scores (where higher scores are more impaired).

Figure 9.

Care partner raw Communicative Participation Item Bank total score relative to Western Aphasia Battery–Aphasia Quotient; where higher scores are less impaired), Apraxia of Speech Rating Scale–Version 3 (ASRS-3) total score (where higher scores are more impaired), and motor speech disorder (MSD) severity rating (where higher scores are less impaired).