Quality of Life and Aphasia : Are proxy responses from spouses/caregivers reliable to use in research with persons with aphasia?

Persons with aphasia (PWA) have language difficulties and their Quality of Life (QoL) has most likely been affected. Because of their loss of language abilities, it is difficult to use PWA in QoL studies. This can lead to the use of proxy responses (a person who answers for the PWA). The aim of this study was to compare the rankings from QoL questionnaires for PWA with the rankings from their spouses/caregivers (i.e., proxyresponse). We also wanted to find out which of the 11 aspects of life PWA andspouses/caregivers ranked as the most respectively the least impacted ones. A totalnumber of 57 persons participated in the study. The participants consisted of two groups, one group with PWA and one group of their spouses/caregivers. A questionnaire-based cross-sectional survey completed via a face-to-face interview was used to collect data from both groups. The results showed that there was poor internal consistency and a weak correlation between the two groups. The two groups ranked different aspects of life as “most impacted” and “least impacted”. The PWA ranked Vocation/Occupation as the “most impacted” and Family life as the “least impacted”aspects of life. The spouses/caregivers ranked Overall ability to communicate as the“most impacted” and Ability to self-care as the “least impacted” aspects of life. The results indicate that proxy responses may not be appropriate and should be interpreted with caution in QoL studies with PWA