Agreement between People with Aphasia and Their Proxies on Health-Related Quality of Life after Stroke, Using the Greek SAQOL-39g


Health related quality of life (HRQL) measures are increasingly used to evaluate stroke interventions. People with severe aphasia after stroke may be unable to self-report on such measures, necessitating the use of proxy respondents. This study explored the level of agreement between people with aphasia and their proxies on the Greek Stroke and Aphasia Quality of Life Scale-39 generic version (SAQOL-39g) and whether this agreement was influenced by proxy levels of depression and carer strain. Methods: Participants were people with aphasia (PWA) who were over six months post-stroke and medically stable. Proxies were nominated by the PWA and had to see them at least twice a week. PWA completed the Frenchay Aphasia Screening Test and the Greek SAQOL-39g. Proxies completed the Greek SAQOL-39g proxy version, the General Health Questionnaire-12 and the Caregiver Strain Index. Results: 23 pairs of people with aphasia and their proxies took part. Proxies rated people with aphasia as more severely affected than they rated themselves. The difference was significant for the overall scale and the physical and communication domains (p < 0.05); yet the bias introduced by these differences was small to moderate, with effect sizes ranging from 0.15 to 0.47. The strength of the agreement between people with aphasia and proxies was excellent for the overall scale and all three domains (ICC = 0.79 - 0.97). The level of agreement was not associated with carer strain or emotional distress. We conclude that clinicians and researchers can use proxy ratings to evaluate the quality of life of people with severe aphasia but need to be aware of trends in proxy reporting and take these into account when interpreting data.

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Ignatiou, M. , Christaki, V. , Chelas, E. , Efstratiadou, E. & Hilari, K. (2012). Agreement between People with Aphasia and Their Proxies on Health-Related Quality of Life after Stroke, Using the Greek SAQOL-39g. Psychology, 3, 686-690. doi: 10.4236/psych.2012.39104.

Conflicts of Interest

The authors declare no conflicts of interest.


[1] Berzon, R., Hays, R. D., & Shumaker, S. A. (1993). International use, application and performance of health-related quality of life instruments. Quality of Life Research, 2, 367-368.doi:10.1007/BF00422214
[2] Bullinger, M., Anderson, R., Cella, D., & Aaronson, N. K. (1993). Developing and evaluating cross cultural instruments: from minimum requirements to optimal models. Quality of Life Research, 2, 451-459. doi:10.1007/BF00422219
[3] 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
[4] Chapey, R. (2008). Language intervention strategies in aphasia and related neurogenic communication disorders (5th ed.). Baltimore: Lippincott Williams & Wilkins.
[5] 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
[6] Cohen, J. (1988). Statistical power analysis for the behavioural sciences (2nd ed.). Hillsdale, NY: Lawrence Erlbaum.
[7] 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
[8] 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
[9] Duncan, P. W., Lai, A. M., Tyler, D., Perera, S., Reker, D. M., & Studenski, S. (2002). Evaluation of proxy responses to the stroke impact scale. Stroke, 33, 2593-2599.doi:10.1161/01.STR.0000034395.06874.3E
[10] Efstratiadou, E. A., Chelas, E. N., Ignatiou, M., Christaki, V., Papathanasiou I., & Hilari, K. (2012) Quality of life after stroke: Evaluation of the Greek SAQOL-39g. Folia Phoniatrica Logopaedica, 64.doi:10.1159/000340014
[11] Enderby P., Wood V., & Wade, D. (1987). Frenchay aphasia screening test. Windsor: NFER-Nelson.
[12] Goldberg, D. P. (1972). The detection of psychiatric illness by questionnaire. London: Oxford University Press.
[13] 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
[14] Hays, R. D., Anderson, R., & Revicki, D. (1993). Psychometric considerations in evaluating health-related quality of life measures. Quality of Life Research, 2, 441-449. doi:10.1007/BF00422218
[15] Hilari, K. (2011). The impact of stroke: Are people with aphasia different to those without? Disability and Rehabilitation, 33, 211-218.doi:10.3109/09638288.2010.508829
[16] Hilari, K., & Byng S. (2009). Health-related quality of life in people with severe aphasia. International Journal of Language and Communication Disorders, 44, 193-205.doi:10.1080/13682820802008820
[17] Hilari, K., Byng, S., Lamping, D. L., & Smith, S. C. (2003). Stroke and aphasia quality of life scale-39 (SAQOL-39): Evaluation of acceptability, reliability and validity. Stroke, 34, 1944-1950.doi:10.1161/01.STR.0000081987.46660.ED
[18] Hilari, K., Lamping, D. L., Smith, S. C., Northcott, S., Lamb, A., Marshall, J. (2009). Psychometric properties of the stroke and aphasia quality of life scale (SAQOL-39) in a generic stroke population. Clinical Rehabilitation, 23, 544-557. doi:10.1177/0269215508101729
[19] 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 Medicine and Rehabilitation, 93, S86-S95. doi:10.1016/j.apmr.2011.05.028
[20] 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
[21] 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.
[22] 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
[23] Marshall, G. N., Hays, R. D., & Nicholas, R. (1994). Evaluating agreement between clinical assessment methods. International Journal of Methods in Psychiatric Research, 4, 249-257.
[24] Mayou, R., & Bryant, B. (1993). Quality of life in cardiovascular disease. British Medical Journal, 69, 460-466.
[25] 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
[26] 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
[27] 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
[28] Patrick, D. L., & Erickson, P. (1993). Assessing health-related quality of life for clinical decision making. In the S. R. Walker (Eds.), Quality of life assessment: key issues in the 1990’s (pp. 11-63). Dordrecht: Kluwer Academic Publishers.
[29] Pickard, A. S., Johnson, J. A., Feeny, D. H., Shuaib, A., Carriere, K. C., & Nasser, A. M. (2004). Agreement between patient and proxy assessments 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
[30] Robinson, B. (1983). Validation of a caregiver strain index. Journal of Gerontology, 38, 344-348.
[31] Rosner, B. (2000). Fundamentals of biostatistics (6th ed.). Pacific Grove, CA: Duxbury.
[32] Royal College of Physicians (2008). National clinical guidelines for stroke (3rd ed.). Prepared by the Intercollegiate Working Party for Stroke. London: RCP.
[33] Sneeuw, K. C. A., Aaronson, N. K., de Haan, R. J., & Limburg, M. (1997). Assessing quality of life after stroke. The value and limitations of proxy ratings. Stroke, 28, 1541-249.doi:10.1161/01.STR.28.8.1541
[34] 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
[35] 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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