Developing and Validating a Health-Related Quality of Life Measure for People with Aphasia

Dirusha Moodley, University of Windsor

Abstract

Aphasia is a neurological disorder resulting from damage to the brain. Individuals with aphasia experience deficits in language-based abilities, such as reading, writing, speech comprehension and/or speech production. These limitations reflect in the population's social and personal lives, with individuals often reporting fewer social contacts, fewer social activities and increased feelings of isolation, social exclusion, anxiety and depression. Considering this, efforts must be made to increase the support and accessibility for this population. Integral to gauging the efficacy of these initiatives is the assessment of health-related quality of life (HRQoL). There are currently several measures used to evaluate HRQoL in people with aphasia. Each measure provides an evaluation of HRQoL from a broad perspective. However, several shortcomings cause these measures to lack sensitivity to the specific problems faced by this population, particularly with regard to communication. Stemming from this, the primary objective of this study was to design and validate an accessible HRQoL measure for people with aphasia while the secondary objective was to determine how individuals with aphasia score on this measure and the well-established SAQOL-39 compared with a matched control group. While this new measure demonstrates favorable properties, findings from the analyses of reliability, construct validity and concurrent validity have informed some essential changes. Once these changes have been made, these properties will be re-evaluated in a larger population. Consistent with the hypothesis, the findings from a Mann-Whitney U test indicate that participants with aphasia scored lower on both measures of HRQoL compared with a matched control group. Overall, this study served as an essential step in the development of this measure. The findings provide us with a more comprehensive understanding of how communication loss can impact an individual's life and help us pinpoint how to better aid this population.