Health-related quality of life in people with severe aphasia.

BACKGROUND: Health-related quality of life (HRQL) measures are increasingly used to help us understand the impact of disease or disability on a person's life and to measure the effectiveness of interventions. A small number of studies have looked at perceived HRQL in people with mild or moderate aphasia. They report that reduced HRQL is associated with low psychological well-being and depression, reduced activity levels and high levels of communication disability. Still, very little is known about the quality of life of people with severe aphasia. AIMS: This study aimed to evaluate the HRQL of people with severe aphasia as rated by their proxy respondents. To increase our understanding of these proxy evaluations, the findings were compared with those of two other studies of HRQL in people with moderate or mild aphasia, using proxy and self-report respondents. METHODS & PROCEDURES: A questionnaire-based cross-sectional survey was carried out where proxies of people with severe aphasia reported on their HRQL. The people with severe aphasia who took part in this study were part of a larger cohort of people with aphasia who were able to self-report on their HRQL. Aphasia was assessed with the American Speech and Hearing Association Functional Assessment of Communication Skills for Adults (ASHA-FACS) and the Frenchay Aphasia Screening Test (FAST) and HRQL with the Stroke and Aphasia Quality of Life (SAQOL) scale (proxy-reported). SAQOL-39 scores were derived from the SAQOL. RESULTS & RESULTS: People with severe aphasia's quality of life, as measured by their proxies (n = 12), was low and more than one standard deviation below that of the standardization sample of the SAQOL. The overall mean score for the SAQOL-39 and the means for its physical and communication domains were below the 20th centile. They were also significantly lower that those of the comparison studies of self-reports (n = 83) and proxy ratings (n = 50) of people with mild or moderate aphasia (p

Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39): evaluation of acceptability, reliability, and validity.

BACKGROUND AND PURPOSE: Health-related quality of life (HRQL) is a key outcome in stroke clinical trials. Stroke-specific HRQL scales (eg, SS-QOL, SIS) have generally been developed with samples of stroke survivors that exclude people with aphasia. We adapted the SS-QOL for use with people with aphasia to produce the Stroke and Aphasia Quality of Life Scale (SAQOL). We report results from the psychometric evaluation of the initial 53-item SAQOL and the item-reduced SAQOL-39. METHODS: We studied 95 people with long-term aphasia to evaluate the acceptability, reliability, and validity of the SAQOL and SAQOL-39 using standard psychometric methods. RESULTS: A total of 83 of 95 (87%) were able to complete the SAQOL by self-report; their results are reported here. Results supported the reliability and validity of the overall score on the 53-item SAQOL, but there was little support for hypothesized subdomains. Using factor analysis, we derived a shorter version (SAQOL-39) that identified 4 subdomains (physical, psychosocial, communication, and energy). The SAQOL-39 demonstrated good acceptability, internal consistency (Cronbach's alpha=0.74 to 0.94), test-retest reliability (intraclass correlation coefficient=0.89 to 0.98), and construct validity (corrected domain-total correlations, r=0.38 to 0.58; convergent, r=0.55 to 0.67; discriminant, r=0.02 to 0.27 validity). CONCLUSIONS: The SAQOL-39 is an acceptable, reliable, and valid measure of HRQL in people with long-term aphasia. Further testing is needed to evaluate the responsiveness of the SAQOL-39 and to investigate its usefulness in evaluative research and routine clinical practice.

Values in practice and practising values.

UNLABELLED: This paper first explores evidence that speech-language pathologists are experiencing dissatisfaction with their roles and then argues that one source of dissatisfaction may be in a mismatch between personal and organisational values. In order to clarify their notion of values, the authors next present a model that outlines various levels at which values operate in therapy and show how values pervade all aspects of practice. The paper then offers some practical examples of how a new organisation has tried to address overtly the implementation of values in practice, with suggestions for how other practitioners might go about making their own personal and organisational values more explicit. The paper ends with a few caveats about the difficulties and dangers of attending to values and conclude with why it is a beneficial endeavour. LEARNING OUTCOMES: Participants will be able to (1) understand issues and practices that contribute to professional burnout; (2) describe a values-based framework for clinical practice; (3) understand the importance of concerning oneself with values, despite the difficulties in so doing; (4) explore some difficulties in adopting a medical model.