Importance of health-related quality of life for persons with aphasia, their significant others, and SLPs: Who do we ask?

Background: Outcomes that support improved health-related quality of life (HRQL) are increasingly identified as desirable products to aphasia intervention. Although domain importance has been examined for survivors of stroke, little research evidence exists indicating what particular HRQL domains are or are not important to persons with aphasia (PwA). Aims: The study aimed to determine if persons with mild, moderate, and severe aphasia, their respective speech-language pathologists (SLPs) and respective significant others (SOs) attribute similar importance rankings to different domains and overall HRQL. Method Procedures: This study was a prospective, observational, non-randomised group design. The Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39; Hilari, Byng, Lamping, Smith, 2003a) and the Quality of Communication Life scale (Paul et al., 2004) were administered to 24 PwA, their treating SLPs (n = 7), and SOs (n = 24). Importance ratings on a 5-point Likert scale were obtained for each scale item. Severity of aphasia was determined by expressive ability resulting in by chance assignment of eight participants per severity group. Outcomes Results: The SAQOL-39 physical domain was the only HRQL domain to be statistically significant with a significant group main effect, F(2, 21) = 4.057, p .05. The SLP and SO significantly correlated with each other for importance of HRQL, but not with the PwA who had no significant correlations with the importance ratings made by the SO or the SLP on the SAQOL-39 and QCL. A total of 43% of variance in the overall importance ratings by PwA was accounted for by age, R2 = .434, F(1, 22) = 16.89, p .01. Conclusions: Seeking importance ratings of HRQL domains from persons with mild, moderate, and severe aphasia may result in development of treatment goals more relevant to the PwA. Assessment of multiple HRQL domains is necessary to understanding priorities PwA place on rehabilitation outcomes across the continuum of care. Consideration for severity assignments beyond impairment-based assessments is discussed.