Poststroke Communication Ability Predicts Patient–Informant Discrepancies in Reported Activities and Participation

Abstract

Background: Participation in life situations has been identified by people with aphasia (PWA) as an ultimate outcome of rehabilitation and is often measured with patient-reported outcome measures (PROMs) or informant-reported measures. It is known that PWA and informants do not always produce similar scores on measures of activities and participation. However, systematic differences between PWA and informants and the causes of these differences are not well understood. Here, we investigated these differences as a function of language impairment, perceived level of activity and participation success, and depressive symptoms. Method: Participants were 29 PWA–informant dyads who completed a performance-based language assessment and three measures related to different aspects of activities and participation. Outcome variables were PWA–informant difference scores in the activities and participation measures. Results: PWA ratings of activities and participation were not statistically significantly associated with performance-based language severity. Hierarchical regression models with both language impairment and informant-reported scores as predictor variables explained 53%–71% of the variance in PWA–informant difference scores (all p < .05). In particular, mild communication challenges were associated with the PWA reporting significantly worse participation than the informant perceived. In contrast, more severe communication challenges were associated with the PWA reporting significantly better participation than the informant perceived. Discussion: These findings highlight the importance of measuring participation by PROM. The PWA's experience of participation is not related to their level of language impairment and is predictably different from their care partners' perspective. As others have also reported, “mild” aphasia is not so mild to the PWA. Similarly, “severe” may not be so severe to the PWA. Further research is needed to connect these findings with counseling and caregiver education. Research on response processes (e.g., response shift) is also warranted.