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Quality of life in multiple sclerosis (MS) and role of fatigue, depression, anxiety, and stress: A bicenter study from north of Iran.多发性硬化症(MS)患者的生活质量以及疲劳、抑郁、焦虑和压力的作用:来自伊朗北部的一项双中心研究。
Iran J Nurs Midwifery Res. 2014 Nov;19(6):593-9.
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Responsiveness of the Multiple Sclerosis International Quality of Life questionnaire to disability change: a longitudinal study.多发性硬化症国际生活质量问卷对残疾变化的反应:一项纵向研究。
Health Qual Life Outcomes. 2013 Jul 29;11:127. doi: 10.1186/1477-7525-11-127.
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The importance of quality-of-life assessment in the management of patients with multiple sclerosis. Recommendations from the Middle East MS Advisory Group.生活质量评估在多发性硬化症患者管理中的重要性。中东多发性硬化症咨询小组的建议。
Neurosciences (Riyadh). 2011 Apr;16(2):109-13.
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Comparing the cost-effectiveness of disease-modifying drugs for the first-line treatment of relapsing-remitting multiple sclerosis.比较疾病修饰药物用于复发缓解型多发性硬化症一线治疗的成本效益。
J Manag Care Pharm. 2009 Sep;15(7):543-55. doi: 10.18553/jmcp.2009.15.7.543.
6
Validation of the Multiple Sclerosis International Quality of Life questionnaire.多发性硬化症国际生活质量问卷的验证
Mult Scler. 2008 Mar;14(2):219-30. doi: 10.1177/1352458507080733. Epub 2007 Oct 17.
7
Diagnostic criteria for multiple sclerosis: 2005 revisions to the "McDonald Criteria".多发性硬化症的诊断标准:对“麦克唐纳标准”的2005年修订版。
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Do general and multiple sclerosis-specific quality of life instruments differ?一般生活质量量表和多发性硬化症特异性生活质量量表有差异吗?
Can J Neurol Sci. 2004 Feb;31(1):64-71. doi: 10.1017/s0317167100002857.
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Determinants of overall quality of life in secondary progressive MS: a longitudinal study.继发进展型多发性硬化症患者总体生活质量的决定因素:一项纵向研究
Neurology. 2001 Sep 11;57(5):889-91. doi: 10.1212/wnl.57.5.889.
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一项评估皮下注射干扰素-1a治疗的阿拉伯语多发性硬化症患者中MusiQoL有效性的前瞻性多中心研究。

A Prospective Multicenter Study for Assessing MusiQoL Validity among Arabic-Speaking MS Patients Treated with Subcutaneous Interferon -1a.

作者信息

Al Jumah Mohammed, Kojan Suleiman, Alroughani Raed, Cupler Edward, Bohlega Saeed, Daif Abdulkader, Al Mujalli Mousa, Al Harbi Talal, El Tamawy Mohamed, Ashour Samia, Mhiri Chokri, Gouider Riadh, Jawhary Ayah, El Boghdady Ahmed, Hussein Mohamed

机构信息

King Fahad Medical City, MOH, As Sulimaniyah, Riyadh 12231, Saudi Arabia.

King Abdullah International Medical Research Center, King Saud bin Abdulaziz University for Health Sciences, King Abdulaziz Medical City, National Guard Health Affairs, Riyadh 11481, Saudi Arabia.

出版信息

Mult Scler Int. 2021 Mar 2;2021:6681431. doi: 10.1155/2021/6681431. eCollection 2021.

DOI:10.1155/2021/6681431
PMID:33747564
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7943271/
Abstract

Few studies examine health-related quality of life (HRQoL) in Arabic-speaking multiple sclerosis (MS) patients. However, HRQoL tools such as the Short Form-36 QoL instrument (SF-36) and the Multiple Sclerosis International QoL (MusiQoL) questionnaire have been validated in other languages. The primary objective of this study was to prospectively assess HRQoL using the MusiQoL questionnaire among Arabic-speaking MS patients treated with subcutaneous interferon (sc IFN -1a) over 12 months, as part of a prospective, multinational, multicenter cohort study. Patients' clinical parameters and HRQoL were assessed at baseline, 6 months, and 12 months. Changes in MusiQoL total and subdomain scores were compared using a Friedman test. Correlation between MusiQoL total score and Expanded Disability Status Score (EDSS) was also evaluated. In total, 439 patients from four Arabic-speaking countries were included. The mean age was 32.44 (±0.34) years, 71.5% were female, and 63.1% had an education level of university or above. The mean MS duration was 4.13 (±0.12) years, mean age at first attack was 27.35 (±0.26) years, and mean baseline EDSS score was 2.05 (±0.04). MusiQoL total score significantly improved at 6 months; however, this diminished at 12 months (65.67 ± 0.8 at baseline vs. 67.21 ± 0.79 at 6 months and 65.75 ± 0.8 at 12 months; = 0.0015). Several aspects of patients' HRQoL including activity of daily living, physical well-being, symptoms, and coping improved. Overall HRQoL measured using SF-36 remained generally unchanged over time ( = 0.215). There was a statistically significant inverse relationship between change in EDSS score over time and change in overall MusiQoL score over time. In summary, findings confirm the utility of using MusiQoL for assessing changes in HRQoL during treatment with sc IFN -1a in Arabic-speaking patients with MS.

摘要

很少有研究调查讲阿拉伯语的多发性硬化症(MS)患者的健康相关生活质量(HRQoL)。然而,诸如简短健康调查量表36项(SF - 36)和国际多发性硬化症生活质量问卷(MusiQoL)等HRQoL工具已在其他语言中得到验证。本研究的主要目的是作为一项前瞻性、跨国、多中心队列研究的一部分,使用MusiQoL问卷对接受皮下注射干扰素(sc IFN -1a)治疗12个月的讲阿拉伯语的MS患者的HRQoL进行前瞻性评估。在基线、6个月和12个月时评估患者的临床参数和HRQoL。使用Friedman检验比较MusiQoL总分和子领域得分的变化。还评估了MusiQoL总分与扩展残疾状态评分(EDSS)之间的相关性。总共纳入了来自四个讲阿拉伯语国家的439名患者。平均年龄为32.44(±0.34)岁,71.5%为女性,63.1%的教育水平为大学及以上。平均MS病程为4.13(±0.12)年,首次发病的平均年龄为27.35(±0.26)岁,平均基线EDSS评分为2.05(±0.04)。MusiQoL总分在6个月时显著改善;然而,在12个月时有所下降(基线时为65.67±0.8,6个月时为67.21±0.79,12个月时为65.75±0.8;P = 0.0015)。患者HRQoL的几个方面,包括日常生活活动、身体健康、症状和应对能力都有所改善。使用SF - 36测量的总体HRQoL随时间总体保持不变(P = 0.215)。EDSS评分随时间的变化与总体MusiQoL评分随时间变化之间存在统计学上的显著负相关。总之,研究结果证实了使用MusiQoL评估讲阿拉伯语的MS患者在接受sc IFN -1a治疗期间HRQoL变化的效用。