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

Maria Ignatiou,Katerina Hilari,Evangelia A Efstratiadou,Evripidis Nicolaos Chelas,Vasiliki Christaki

doi:10.4236/psych.2012.39104

Abstract

st , 2012; revised July 2 nd , 2012; accepted August 3 rd , 2012 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.

Highlights

Health-related quality of life (HRQL) is defined as the impact of a health state on a person’s ability to lead a fulfilling life (Bullinger, Anderson, Cella, & Aaronson, 1993) and generally incorporates the individual’s subjective evaluation of their physical, mental/emotional, family and social functioning (Berzon, Hays & Shumaker, 1993; Hays, Anderson, & Revicki, 1993)
A recent systematic review reported that emotional distress, reduced level of activities, increased co-morbidity and severity of communication impairment were predictors of poorer HRQL in people with aphasia (Hilari, Needle, & Harrison, 2012)
They had to meet the following criteria: a) aphasia due to a stroke; b) at least 6 months post stroke and medically stable, c) be able to nominate a significant other to act as a proxy responder and d) score ≥7/15 on the receptive subtests of the Frenchay Aphasia Screening Test (FAST) (Enderby, Wood, & Wade, 1987) which is the cut off score for self-completion of the SAQOL-39g

Summary

Introduction

Health-related quality of life (HRQL) is defined as the impact of a health state on a person’s ability to lead a fulfilling life (Bullinger, Anderson, Cella, & Aaronson, 1993) and generally incorporates the individual’s subjective evaluation of their physical, mental/emotional, family and social functioning (Berzon, Hays & Shumaker, 1993; Hays, Anderson, & Revicki, 1993). HRQL measures are increasingly used to evaluate healthcare interventions and they can be useful for people with chronic conditions (Kartsona & Hilari, 2007) They allow the clinician to understand and measure the impact of disease on the patients’ life (Patrick & Erickson, 1993) and to incorporate the patient’s perspective in clinical decision-making (Mayou & Bryant, 1993). Stroke is the most common cause of aphasia an acquired language disorder that can affect all language modalities: understanding what other people say, expressing oneself, and reading and writing (Chapey, 2008). It is a long-term and lifechanging condition. A recent systematic review reported that emotional distress, reduced level of activities, increased co-morbidity and severity of communication impairment were predictors of poorer HRQL in people with aphasia (Hilari, Needle, & Harrison, 2012)

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