Quality of Life Outcomes Following Stroke for People with Aphasia: Perceptions of Patients, Caregivers, and Speech-Language Pathologists

Introduction: Due to the inherent difficulty in obtaining information using language-based questionnaires, research on the quality of life (QOL) for persons with aphasia (PWAs) is lacking. The purpose of this study was to investigate which factors have an impact on a PWA and to investigate the reliability of using proxy responses from either spouse/caregivers or speech-language pathologists (SLPs). Methods: A QOL scale was developed with 11 factors identified in the literature as having an impact on the QOL of PWAs. Data were collected through interviews with 31 PWAs and 26 spouse/caregivers recruited from a community aphasia therapy center. Thirty-six SLPs responded to an online survey. Results: Vocation was identified by PWAs as having the most impact on their QOL and family as having the least impact. Cronbach’s alpha and intraclass correlation coefficients (ICCs) showed decreased internal consistency and reliability across ratings and respondents. Conclusions: Overall results suggest that proxy responses may not accurately reflect the factors that impact the QOL of a PWA but that spouse/caregiver responses may be more representative than those of SLPs.