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目的:评价大骨节病患者生存质量,并分析其影响因素。方法:2017年9月至2019年5月在陕西省大骨节病历史重病区永寿县和麟游县,选择18岁及以上成年大骨节病患者为研究对象。应用大骨节病患者基本信息问卷和中文版欧洲五维五水平健康量表(EQ-5D-5L量表)对大骨节病患者进行调查,描述其在行动能力、自我照顾能力、日常活动、疼痛/不舒服、焦虑/沮丧5个维度的健康状态分布,每个维度包括没有问题、轻度问题、中度问题、重度问题、极度问题5个水平。采用效应值(EQ指数,- 0.391 ~ 1.000)评价患者基于群体视角的生存质量,EQ指数越高则群体的生存质量越好;视觉模拟系统(VAS)评分(0 ~ 100分)评价患者基于个体视角的生存质量,VAS评分越高则个体的生存质量越好。同时,采用多重线性回归分析进行大骨节病患者生存质量的多因素分析。结果:共纳入大骨节病患者245例,年龄为(60.37 ± 7.10)岁。大骨节病患者在自我照顾能力和焦虑/沮丧2个维度轻度问题占比最大,分别为31.8%(78/245)和27.3%(67/245);在日常活动维度中度问题占比最大,为32.7%(80/245);在行动能力和疼痛/不舒服2个维度重度问题占比最大,分别为46.9%(115/245)和45.7%(112/245)。EQ指数[中位数(四分位数间距)]为0.311(0.059,0.563),VAS评分为42.5(30.0,60.0)分。经多重线性回归分析,文化程度、疼痛程度、身体畸形自卑感、社会参与障碍对EQ指数的影响有统计学意义(n P均< 0.01);经济情况、疼痛程度、身体畸形自卑感、社会参与障碍对VAS评分的影响有统计学意义(n P均< 0.05)。n 结论:大骨节病患者的生存质量较差,受躯体、心理、社会3个方面的影响,相关医务工作者应当关注大骨节病患者的整体健康。“,”Objective:To evaluate the life quality of patients with Kashin-Beck disease (KBD), and to analyze its influencing factors.Methods:From September 2017 to May 2019, adult KBD patients aged 18 years old and over were selected as the study subjects in the historical serious disease areas (Yongshou County and Linyou County) of KBD in Shaanxi Province. KBD patients were investigated by using the basic information questionnaire and the Chinese version of the European Five-dimensional Five-level Health Scale (EQ-5D-5L), the distribution of health status in the five dimensions of mobility, self-care ability, daily activity, pain/discomfort, and anxiety/depression were described, and each dimension included five levels of no problem, mild problem, moderate problem, severe problem, and extreme problem. EQ index (- 0.391 - 1.000) was used to evaluate the quality of life of patients based on group perspective, the higher EQ index was, the better life quality of the group would be; visual analogue system (VAS) score (0 - 100 points) was used to evaluate the life quality of patients based on individual perspective, the higher VAS score was, the better life quality of the individual would be. At the same time, multiple linear regression analysis was used to analyze the life quality of KBD patients.Results:A total of 245 KBD patients were included, aged (60.37 ± 7.10) years old. The mild problems of self-care ability and anxiety/depression of KBD patients, accounted for the largest proportion, which were 31.8% (78/245) and 27.3% (67/245), respectively; in terms of daily activity, the moderate problem accounted for the largest proportion, which was 32.7% (80/245); in terms of mobility and pain/discomfort, the severe problem accounted for the largest proportion, which were 46.9% (115/245) and 45.7% (112/245), respectively. EQ index [median (quartile range)] was 0.311 (0.059, 0.563), and VAS score was 42.5 (30.0, 60.0) points. After multiple linear regression analysis, the effects of education level, pain level, body deformity inferiority complex, and social participation barrier on EQ index were statistically significant (n P < 0.01); the effects of economic level, pain level, body deformity inferiority complex, and social participation barrier on VAS score were statistically significant ( n P < 0.05).n Conclusion:The life quality of KBD patients is poor, it is affected by physical, psychological and social aspects, so relevant medical workers should pay attention to the overall health of KBD patients.