黄斑变性患者的生活质量：患者、临床医生及社区成员的看法
Quality of life with macular degeneration: perceptions of patients, clinicians, and community members.
作者信息
Stein J D, Brown M M, Brown G C, Hollands H, Sharma S
机构信息
Center for Evidence-Based Health Care Economics, Flourtown, PA 19031, USA.
出版信息
Br J Ophthalmol. 2003 Jan;87(1):8-12. doi: 10.1136/bjo.87.1.8.
BACKGROUND/AIMS: Age related macular degeneration (ARMD) is a common ophthalmological disorder that can significantly impair a patient's ability to function independently and potentially have a dramatic impact on health related quality of life. The aim of this study is to evaluate the quality of life of patients with ARMD, through the use of utility evaluation, and assess whether clinicians and healthy volunteers appreciate the impact of ARMD on health related quality of life.
METHODS
A standardised questionnaire using the time-tradeoff method of utility analysis was created to assess health related quality of life. This questionnaire was distributed to 115 patients with ARMD. A similar questionnaire was distributed to 142 healthy volunteers and 62 clinicians who were asked to assume that they had ARMD. Comparisons were made among the responses from the members of the three groups.
RESULTS
There was a significant difference in the utility scores among respondents with mild, moderate, and severe ARMD when compared to members of the general public and clinicians who were asked to assume they had each severity of ARMD. For mild ARMD the mean utility scores were 0.932, 0.960, and 0.832, for the general public, clinicians, and patients respectively (F = 21.7; p <0.001). No significant difference was found between the community members and clinicians (p <0.166); however, the patient group differed significantly from the general public (p<0.001) and clinician (p <0.001) groups. The utility scores for moderate ARMD for the general public, clinicians, and patients were 0.918, 0.877, and 0.732, respectively. (F = 34.6, p <0.001). There was no significant difference between the general public and clinicians (p <0.143); however, the patient group differed significantly compared with the general public (p <0.001) and clinician (p <0.001) groups. The utility scores for people with severe ARMD in the general public, clinician, and patient groups were 0.857, 0.821, and 0.566, respectively (F = 45.5; p <0.001). No significant difference was shown between the community members and clinicians (p <0.386); however, a significant difference was seen when comparing the patient group with the community member and clinician (p<0.001) groups.
CONCLUSION
Clinicians and community members may greatly underestimate the impact of mild, moderate, and severe ARMD on health related quality of life.
背景/目的：年龄相关性黄斑变性（ARMD）是一种常见的眼科疾病，会严重损害患者独立生活的能力，并可能对健康相关生活质量产生巨大影响。本研究旨在通过效用评估来评价ARMD患者的生活质量，并评估临床医生和健康志愿者是否认识到ARMD对健康相关生活质量的影响。
方法
采用效用分析的时间权衡法创建了一份标准化问卷，以评估健康相关生活质量。该问卷分发给115名ARMD患者。一份类似的问卷分发给142名健康志愿者和62名被要求假设自己患有ARMD的临床医生。对三组人员的回答进行比较。
结果
与被要求假设患有不同严重程度ARMD的普通公众和临床医生相比，轻度、中度和重度ARMD患者的效用得分存在显著差异。对于轻度ARMD，普通公众、临床医生和患者的平均效用得分分别为0.932、0.960和0.832（F = 21.7；p <0.001）。社区成员和临床医生之间未发现显著差异（p <0.166）；然而，患者组与普通公众组（p<0.001）和临床医生组（p <0.001）存在显著差异。中度ARMD患者的普通公众、临床医生和患者的效用得分分别为0.918、0.877和0.732。（F = 34.6，p <0.001）。普通公众和临床医生之间没有显著差异（p <0.143）；然而，患者组与普通公众组（p <0.001）和临床医生组（p <0.001）相比存在显著差异。重度ARMD患者的普通公众、临床医生和患者组的效用得分分别为0.857、0.821和0.566（F = 45.5；p <0.001）。社区成员和临床医生之间未显示出显著差异（p <0.386）；然而，将患者组与社区成员和临床医生组进行比较时，发现存在显著差异（p<0.001）。
结论
临床医生和社区成员可能大大低估了轻度、中度和重度ARMD对健康相关生活质量的影响。
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