title: Health-related quality of life in people with severe aphasia.
abstract: 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.
  
  
  OBJECTIVE
  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
  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<or=0.003). In the comparison studies there were no significant differences between the self-report and proxy ratings of people with mild or moderate aphasia.
  
  
  CONCLUSIONS
  This small study suggests that the HRQL of people with severe aphasia, as reported by their proxies, is severely compromised. Further research, using a wide range of methodologies, is needed in order to address the challenge of understanding better the quality of life of people with severe aphasia.
authors.affiliation: Department of Language and Communication Science, City University, London, UK. K.hilari@city.ac.uk
authors.forename: Katerina
authors.initials: K
authors.lastname: Hilari
authors.forename: Sally
authors.initials: S
authors.lastname: Byng
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001037:Aphasia / Q000209:etiology / Q000523:psychology*; D015331:Cohort Studies; D003430:Cross-Sectional Studies; D004739:England; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D011569:Psychiatric Status Rating Scales; D011788:Quality of Life; D012649:Self Concept; D012720:Severity of Illness Index; D020521:Stroke / Q000150:complications; D011795:Surveys and Questionnaires; D055815:Young Adult