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[重症肌无力患者健康相关生活质量的调查分析——采用重症肌无力生活质量-15中文版]

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

作者信息

Miao X H, Lian Z Y, Liu J, Chen H X, Shi Z Y, Zhou H Y, Yang R

机构信息

Department of Neurology,West China Hospital, Sichuan University, Chengdu 610041, China.

出版信息

Beijing Da Xue Xue Bao Yi Xue Ban. 2018 Jun 18;50(3):514-520.

PMID:29930422
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.

CONCLUSION

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.

摘要

目的

采用中文版重症肌无力生活质量量表15项(MGQOL - 15)调查四川省某三级医院重症肌无力(MG)患者的健康相关生活质量水平及影响因素,并提出相应措施。

方法

收集四川省某三级医院168例MG患者的一般资料(性别、年龄、体重指数BMI、婚姻状况、文化程度及职业状况)、临床资料[Osserman分型、重症肌无力综合评分(MGC)、其他免疫病、病程、每月门诊就诊次数、每月疾病花费与收入之比及过去1个月内症状发作频率]及中文版MGQOL - 15。

结果

MGQOL - 15平均得分为17.67±12.78。“我的职业技能和工作状态受到负面影响”这一项目得分最高,其次是“我用眼有困难”和“我因重症肌无力而感到沮丧”。单因素分析显示,MG患者的生活质量在不同疾病严重程度MGC(F = 19.353,P < 0.001)、每月疾病花费与收入之比(F = 5.831,P < 0.001)及过去1个月内症状发作频率(F = 9.128,P < 0.001)方面存在差异。多因素回归分析显示,疾病严重程度MGC(β = 0.743,P < 0.001)、每月疾病花费与收入之比(β = 3.347,P < 0.001)及过去1个月内症状发作频率(β = 2.216,P < 0.003)是MG患者健康相关生活质量的主要预测因素。

结论

本研究表明,MGQOL - 15有助于临床医生定期评估MG患者的生活质量,探究影响因素并实施相应干预措施,从而提高患者生活质量。疾病严重程度MGC、每月疾病花费与收入之比及过去1个月内症状发作频率是MG患者生活质量的主要预测因素。临床医生应更加关注MG患者的疾病严重程度MGC及过去1个月内症状发作频率。

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