M. IGNATIOU ET AL.
also explore factors such as time spent with the person with
aphasia, education and carer levels of social support. Lastly,
future research could explore proxy and self-report agreement
on the Greek SAQOL-39g in a generic stroke sample including
those without aphasia.
Conclusion
Using the Greek SAQOL-39g, proxy raters can provide use-
ful information on the HRQL of people with severe aphasia.
However, the client is the most appropriate source of informa-
tion on their own HRQL and proxy reports should be used only
when people with aphasia are so severely affected that they are
unable to self-report. In addition, clinicians and researchers
need to be aware of trends in proxy reporting and take these
into account when interpreting data.
REFERENCES
Berzon, R., Hays, R. D., & Shumaker, S. A. (1993). International use,
application and performance of health-related quality of life instru-
ments. Quality of Life Research, 2, 367-368.
doi:10.1007/BF00422214
Bullinger, M., Anderson, R., Cella, D., & Aaronson, N. K. (1993).
Developing and evaluating cross cultural instruments: From mini-
mum requirements to optimal models. Quality of Life Research, 2,
451-459. doi:10.1007/BF00422219
Carod-Artal, J., Egido, J. A., González, J. L., Varela de Seijas, E.
(2000). Quality of life among stroke survivors evaluated 1 year after
stroke: Experience of a stroke unit. Stroke, 31, 2995-3000.
doi:10.1161/01.STR.31.12.2995
Chapey, R. (2008). Language intervention strategies in aphasia and
related neurogenic communication disorders (5th ed.). Baltimore:
Lippincott Williams & Wilkins.
Choiniere, M., Melzack, R., Girard, N., Rondeau, J., & Paquin, M. J.
(1990). Comparisons between patients’ and nurses’ assessment of
pain and medication efficacy in severe burn injuries. Pain, 40, 143-
152. doi:10.1016/0304-3959(90)90065-L
Cohen, J. (1988). Statistical power analysis for the behavioural sci-
ences (2nd ed.). Hillsdale, NY: Lawrence Erlbaum.
Cruice, M., Worrall, L., Hickson, L., & Murison, R. (2005). Measuring
quality of life: Comparing family members’ and friends’ ratings with
those of their aphasic partners. Aphasiology, 19, 111-129.
doi:10.1080/02687030444000651
Dorman, P. J., Waddell, F., Slattery, J., Dennis, M., & Sandercock, P.
(1997). Are proxy assessments of health status after stroke with the
EuroQol questionnaire feasible, accurate, and unbiased? Stroke, 28,
1883-1887. doi:10.1161/01.STR.28.10.1883
Duncan, P. W., Lai, A. M., Tyler, D., Perera, S., Reker, D. M., & Stu-
denski, S. (2002). Evaluation of proxy responses to the stroke impact
scale. Stroke, 33, 2593-2599.
doi:10.1161/01.STR.0000034395.06874.3E
Efstratiadou, E. A., Chelas, E. N., Ignatiou, M., Christaki, V., Papatha-
nasiou I., & Hilari, K. (2012) Quality of life after stroke: Evaluation
of the Greek SAQOL-39g. Folia Phoniatrica Logopaedica, 64.
doi:10.1159/000340014
Enderby P., Wood V., & Wade, D. (1987). Frenchay aphasia screening
test. Windsor: NFER-Nelson.
Goldberg, D. P. (1972). The detection of psychiatric illness by ques-
tionnaire. London: Oxford University Press.
Grassi, L., Indelli, M., Maltoni, M., Falcini, F., Fabbri, L., & Indelli, R.
(1996). Quality of life of homebound patients with advanced cancer:
Assessments by patients, family members, and oncologists. Journal
of Psychosocial Oncology, 14, 31-45. doi:10.1300/J077v14n03_03
Hays, R. D., Anderson, R., & Revicki, D. (1993). Psychometric con-
siderations in evaluating health-related quality of life measures.
Quality of Life Research, 2, 441-449. doi:10.1007/BF00422218
Hilari, K. (2011). The impact of stroke: Are people with aphasia dif-
ferent to those without? Dis ability and Rehabilita tion, 33, 211-218.
doi:10.3109/09638288.2010.508829
Hilari, K., & Byng S. (2009). Health-related quality of life in people
with severe aphasia. International Journal of Language and Com-
munication Disorders, 44, 193-205.
doi:10.1080/13682820802008820
Hilari, K., Byng, S., Lamping, D. L., & Smith, S. C. (2003). Stroke and
aphasia quality of life scale-39 (SAQOL-39): Evaluation of accept-
ability, reliability and validity. Stroke, 34, 1944-1950.
doi:10.1161/01.STR.0000081987.46660.ED
Hilari, K., Lamping, D. L., Smith, S. C., Northcott, S., Lamb, A., &
Marshall, J. (2009). Psychometric properties of the stroke and apha-
sia quality of life scale (SAQOL-39) in a generic stroke population.
Clinical Rehabilitation, 23, 544-557.
doi:10.1177/0269215508101729
Hilari, K., Needle, J. & Harrison, K. (2012). What are the important
factors in health-related quality of life for people with aphasia? A
systematic review. Archives of Physical Medicin e and Rehabilitation,
93, S86-S95. doi:10.1016/j.apmr.2011.05.028
Hilari, K., Owen, S., & Farrelly, S. J. (2007). Proxy and self-report
agreement on the stroke and aphasia quality of life scale-39. Journal
of Neurology, Neurosurgery and Psychiatry, 78, 1072-1075.
doi:10.1136/jnnp.2006.111476
Kartsona, A., & Hilari, K. (2007). Quality of life in aphasia: Greek
adaptation of the stroke and aphasia quality of life scale-39 item
(SAQOL-39). Europa Medicophysica, 43, 27-35.
Knapp, P., & Hewison, J. (1999). Disagreement in patient and carer
assessment of functional abilities after stroke. Stroke, 30, 934-938.
doi:10.1161/01.STR.30.5.934
Marshall, G. N., Hays, R. D., & Nicholas, R. (1994). Evaluating agree-
ment between clinical assessment methods. International Journal of
Methods in Psychiatric Research, 4, 249-257.
Mayou, R., & Bryant, B. (1993). Quality of life in cardiovascular dis-
ease. British Medical Journal, 69, 460-466.
McCusker, J., & Stoddard, A. M. (1984). Use of a surrogate for the
sickness impact profile. Medical Care, 22, 789-795.
doi:10.1097/00005650-198409000-00002
Northcott, S., & Hilari K. (2011). Why do people lose their friends after
a stroke? International Journal of Language and Communication
Disorders, 46, 524-534doi:10.1111/j.1460-6984.2011.00079.x
O’Brien, J., & Francis, A. (1988). The use of next-of-kin to estimate
pain in cancer patients. Pain, 35, 171-178.
doi:10.1016/0304-3959(88)90224-2
Patrick, D. L., & Erickson, P. (1993). Assessing health-related quality
of life for clinical decision making. In the S. R. Walker (Eds.), Qual-
ity of life assessment: Key issues in the 1990’s (pp. 11-63). Dordrecht:
Kluwer Academic Publishers.
Pickard, A. S., Johnson, J. A., Feeny, D. H., Shuaib, A., Carriere, K. C.,
& Nasser, A. M. (2004). Agreement between patient and proxy as-
sessments of health-related quality of life after stroke using the EQ-
5D and health utilities index. Stroke, 35, 607-612.
doi:10.1161/01.STR.0000110984.91157.BD
Robinson, B. (1983). Validation of a caregiver strain index. Journal of
Gerontology, 38, 344-348.
Rosner, B. (2000). Fundamentals of biostatistics (6th ed.). Pacific Gro-
ve, CA: Duxbury.
Royal College of Physicians (2008). National clinical guidelines for
stroke (3rd ed.). Prepared by the Intercollegiate Working Party for
Stroke. London: RCP.
Sneeuw, K. C. A., Aaronson, N. K., de Haan, R. J., & Limburg, M.
(1997). Assessing quality of life after stroke. The value and limita-
tions of proxy ratings. Stroke, 28, 1541-249.
doi:10.1161/01.STR.28.8.1541
Sneeuw, K. C. A., Sprangers, M. A., & Aaronson, N. K. (2002). The
role of health care providers and significant others in evaluating the
quality of life of patients with chronic disease. Journal of Clinical
Epidemiology, 55, 1130-1143. doi:10.1016/S0895-4356(02)00479-1
Williams, L. S., Bakas, T., Brizendine, E., Plue, L., Tu, W., Hendrie, H.,
& Kroenke, K. (2006). How valid are family proxy assessments of
stroke patients’ health-related quality of life? Stroke, 37, 2081-2085.
doi:10.1161/01.STR.0000230583.10311.9f
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