北京大学学报(医学版) ›› 2018, Vol. 50 ›› Issue (3): 514-520. doi: 10.3969/j.issn.1671-167X.2018.03.020

• 论著 • 上一篇    下一篇

应用中文版15条目重症肌无力生存质量量表对重症肌无力患者生存质量的调查

苗晓慧,连志云,刘举,陈虹西,石紫燕,周红雨△,杨蓉△   

  1. (四川大学华西医院神经内科,成都610041)
  • 出版日期:2018-06-18 发布日期:2018-06-18
  • 通讯作者: 周红雨,杨蓉 E-mail:zhou_hongyu2014@163.com, hxyangrong2014@163.com

Investigation and analysis of health-related quality of life in myasthenia gravis patients with myasthenia gravis quality of life-15 Chinese version

MIAO Xiao-hui, LIAN Zhiyun, LIU Ju, CHEN Hong-xi, SHI Zi-yan, ZHOU Hong-yu△, YANG Rong△   

  1. (Department of Neurology,West China Hospital, Sichuan University, Chengdu 610041, China)
  • Online:2018-06-18 Published:2018-06-18
  • Contact: ZHOU Hong-yu, YANG Rong E-mail:zhou_hongyu2014@163.com, hxyangrong2014@163.com

摘要: 目的:调查四川大学华西医院重症肌无力患者生存质量现状,并探讨其影响因素。方法:采用中文版15条目重症肌无力生存质量量表(myasthenia gravis quality of life-15,MGQOL-15)对四川大学华西医院符合标准的168例重症肌无力患者进行调查,并收集患者的一般资料和临床资料,包括性别、年龄、体重指数(body mass index,BMI)、婚姻状况、文化程度、工作状况、MG分型(Osserman分型)、MG严重程度(myasthenia gravis composite, MGC)得分、是否伴随其他免疫疾病、病程、每月门诊复诊次数、每月疾病花费/收入比、过去1个月症状出现次数等。结果:168例重症肌无力患者,MGQOL-15总得分为(17.67±12.78)分,其中得分最高的前三条目为“工作能力和工作状态受影响、出现下降”(1.661分),“用眼有困难”和“对重症肌无力感到无奈”。单因素分析显示,重症肌无力患者疾病严重程度MGC得分(F=19.353,P<0.001)、每月疾病花费/收入比(F=5.831,P<0.001)、过去1个月症状出现次数不同(F=9.128,P<0.001),患者MGQOL-15得分差异具有统计学意义;多元线性回归分析显示患者疾病严重程度得分(β=0.743,P<0.001)、每月疾病花费/收入比(β=3.347,P<0.001)、过去1个月症状出现次数(β=2.216,P<0.003)是患者MGQOL15得分的影响因素。结论: MGQOL-15有助于临床医护人员对重症肌无力患者生存质量及影响因素进行判断。重症肌无力患者疾病严重程度、每月疾病花费/收入比和过去1个月症状出现次数是患者生存质量的重要影响因素,医护人员应重视MG患者疾病严重程度和过去1个月症状出现次数等指标评估。

关键词: 重症肌无力, 生存质量, 15条目重症肌无力生存质量量表

Abstract: Objective: To investigate the level and influencing factors of health-related quality of life in myasthenia gravis (MG) patients with myasthenia gravis quality of life-15 (MGQOL-15) Chinese version and to provide corresponding measures in one tertiary hospital of Sichuan Province. Methods: We collected the general data (gender, age, body mass index BMI, marital status, educational level and employee status), clinical data [Osserman type, myasthenia gravis composite (MGC), other immunopathies, disease duration, frequency of outpatient visits per month, ratio of disease cost to income each month and frequency of symptoms during the past month] and the MGQOL-15 Chinese version from 168 myasthenia gravis patients in one tertiary hospital of Sichuan Province. Results: The mean score of MGQOL-15 was 17.67±12.78. The score of the item “My occupational skills and job status have been negatively affected.” was the highest, followed by “I have trouble using my eyes.” and “I am frustrated by my MG.” Single factor analysis showed that MG patients’ QOL were different with different disease severity MGC (F=19.353,P<0.001), ratio of disease cost to income each month (F=5.831,P<0.001) and the frequency of symptoms during the past month (F=9.128,P<0.001). Multiple regression analysis showed that disease severity MGC (β=0.743,P<0.001), ration of disease cost to income each month (β=3.347,P<0.001) and the frequency of symptoms during the past month (β=2.216,P<0.003) were the main predictors of HRQOL in the MG patients. Conclusions: Our study showed that the MGQOL-15 is helpful for clinicians to evaluate MG patients’ QOL regularly, investigate the influencing factors and implement corresponding interventions the so as to improve the patients’ quality of life. Disease severity MGC, ratio of disease cost to income each month and the frequency of symptoms during the past month were the main predictors of MG patients’ QOL. Clinicians should pay more attention to MG patients’ disease severity MGC and the frequency of symptoms during the past month.

Key words: Myasthenia gravis, Quality of life, Myasthenia gravis quality of life-15

中图分类号: 

  •  
[1] 杨志晓, , 熊晖, 张月华, 包新华, 姜玉武, 吴晔, 王爽, 常杏芝, 秦炯, 林庆, 吴希如 . 135例儿童重症肌无力患者的临床特点及其治疗后随访[J]. 北京大学学报(医学版), 2011, 43(3): 455-459.
Viewed
Full text


Abstract

Cited

  Shared   
  Discussed   
[1] 田增民, 陈涛, Nanbert ZHONG, 李志超, 尹丰, 刘爽. 神经干细胞移植治疗遗传性小脑萎缩的临床研究(英文稿)[J]. 北京大学学报(医学版), 2009, 41(4): 456 -458 .
[2] 郭岩, 谢铮. 用一代人时间弥合差距——健康社会决定因素理论及其国际经验[J]. 北京大学学报(医学版), 2009, 41(2): 125 -128 .
[3] 成刚, 钱振华, 胡军. 艾滋病项目自愿咨询检测的技术效率分析[J]. 北京大学学报(医学版), 2009, 41(2): 135 -140 .
[4] 卢恬, 朱晓辉, 柳世庆, 郑杰, 邱晓彦. 白细胞介素2促进宫颈癌细胞系HeLaS3免疫球蛋白G的表达[J]. 北京大学学报(医学版), 2009, 41(2): 158 -161 .
[5] 袁惠燕, 张苑, 范田园. 离子交换型栓塞微球及其载平阳霉素的制备与性质研究[J]. 北京大学学报(医学版), 2009, 41(2): 217 -220 .
[6] 徐莉, 孟焕新, 张立, 陈智滨, 冯向辉, 释栋. 侵袭性牙周炎患者血清中抗牙龈卟啉单胞菌的IgG抗体水平的研究[J]. 北京大学学报(医学版), 2009, 41(1): 52 -55 .
[7] 董稳, 刘瑞昌, 刘克英, 关明, 杨旭东. 氯诺昔康和舒芬太尼用于颌面外科术后自控静脉镇痛的比较[J]. 北京大学学报(医学版), 2009, 41(1): 109 -111 .
[8] 祁琨, 邓芙蓉, 郭新彪. 纳米二氧化钛颗粒对人肺成纤维细胞缝隙连接通讯的影响[J]. 北京大学学报(医学版), 2009, 41(3): 297 -301 .
[9] 李宏亮*, 安卫红*, 赵扬玉, 朱曦. 妊娠合并高脂血症性胰腺炎行血液净化治疗1例[J]. 北京大学学报(医学版), 2009, 41(5): 599 -601 .
[10] 李伟军, 邢晓芳, 曲立科, 孟麟, 寿成超. PRL-3基因C104S位点突变体和CAAX缺失体的构建及表达[J]. 北京大学学报(医学版), 2009, 41(5): 516 -520 .