Health-related quality of life in people with severe aphasia
Health-related quality of life in people with severe aphasia
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DOI：
10.1080/13682820802008820
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发表时间：
2009-01-01
影响因子：
2.4
通讯作者：
Byng, Sally
中科院分区：
文献类型：
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作者：
Hilari, Katerina;Byng, Sally
背景资料：与健康相关的生活质量（HRQL）措施越来越多地用于帮助我们了解疾病或残疾对一个人生活的影响，并衡量干预措施的有效性。少数研究关注轻度或中度失语症患者的HRQL感知。他们报告说，HRQL降低与低心理健康和抑郁，活动水平降低和高水平的沟通障碍有关。然而，人们对严重失语症患者的生活质量知之甚少。目的：本研究的目的是评估由代理人评定的严重失语症患者的HRQL。为了增加我们对这些代理评估的理解，我们使用代理和自我报告的受访者，将研究结果与另外两项针对中度或轻度失语症患者的HRQL研究进行了比较。方法程序：进行了一项基于问卷的横断面调查，其中严重失语症患者的代理人报告了他们的HRQL。参加这项研究的严重失语症患者是能够自我报告HRQL的失语症患者的一部分。失语症采用美国言语和听力协会成人沟通技能功能评估（ASHA-FACS）和弗伦谢失语症筛查试验（FAST）进行评估，HRQL采用卒中和失语症生活质量（SAQOL）量表（代理报告）进行评估。SAQOL-39评分来自SAQOL。结果结果：严重失语症患者的生活质量，通过他们的代理人（n=12）测量，是低的，比SAQOL标准化样本的标准差低一个标准差以上。SAQOL-39的总体平均得分及其身体和沟通领域的平均值均低于第20百分位数。他们也显着低于自我报告（n=83）和代理评级（n=50）的轻度或中度失语症患者的比较研究（p 0.003）。在比较研究中，轻度或中度失语症患者的自我报告和代理评级之间没有显着差异。结论所涉问题：这项小型研究表明，严重失语症患者的HRQL，正如他们的代理人所报告的那样，严重受损。为了应对更好地了解严重失语症患者生活质量的挑战，需要使用广泛的方法进行进一步的研究。
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 (p0.003). In the comparison studies there were no significant differences between the self-report and proxy ratings of people with mild or moderate aphasia. Conclusions Implications: 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.