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本文引用的文献

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The association of diet with quality of life, disability, and relapse rate in an international sample of people with multiple sclerosis.在一个国际多发性硬化症患者样本中,饮食与生活质量、残疾及复发率的关联。
Nutr Neurosci. 2015 Apr;18(3):125-36. doi: 10.1179/1476830514Y.0000000117. Epub 2014 Mar 17.
2
The stress-buffering effects of hope on adjustment to multiple sclerosis.希望对多发性硬化症适应的压力缓冲作用。
Int J Behav Med. 2014 Dec;21(6):877-90. doi: 10.1007/s12529-013-9384-0.
3
Patient activation, depression and quality of life.患者激活、抑郁和生活质量。
Patient Educ Couns. 2014 Mar;94(3):432-7. doi: 10.1016/j.pec.2013.10.015. Epub 2013 Nov 5.
4
The association of alcohol consumption and smoking with quality of life, disability and disease activity in an international sample of people with multiple sclerosis.在一个国际多发性硬化症患者样本中,饮酒和吸烟与生活质量、残疾及疾病活动的关联。
J Neurol Sci. 2014 Jan 15;336(1-2):211-9. doi: 10.1016/j.jns.2013.10.046. Epub 2013 Nov 8.
5
Association of fish consumption and Ω 3 supplementation with quality of life, disability and disease activity in an international cohort of people with multiple sclerosis.鱼类摄入和 ω-3 补充与国际多发性硬化症患者队列的生活质量、残疾和疾病活动的关联。
Int J Neurosci. 2013 Nov;123(11):792-800. doi: 10.3109/00207454.2013.803104. Epub 2013 Jun 3.
6
Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease Characteristics.通过Web 2.0平台招募的多发性硬化症患者国际研究方法:人口统计学、生活方式和疾病特征
Neurol Res Int. 2013;2013:580596. doi: 10.1155/2013/580596. Epub 2013 Apr 11.
7
Health-related quality of life outcomes at 1 and 5 years after a residential retreat promoting lifestyle modification for people with multiple sclerosis.多发性硬化症患者生活方式改变促进疗养后 1 年和 5 年的健康相关生活质量结果。
Neurol Sci. 2013 Feb;34(2):187-95. doi: 10.1007/s10072-012-0982-4. Epub 2012 Feb 25.
8
The effect of social support on the quality of life of patients with multiple sclerosis.社会支持对多发性硬化症患者生活质量的影响。
Arq Neuropsiquiatr. 2012 Feb;70(2):108-13. doi: 10.1590/s0004-282x2012000200007.
9
Effect of a residential retreat promoting lifestyle modifications on health-related quality of life in people with multiple sclerosis.促进生活方式改变的住院疗养对多发性硬化症患者健康相关生活质量的影响。
Qual Prim Care. 2010;18(6):379-89.
10
Validation of the patient activation measure in a multiple sclerosis clinic sample and implications for care.在多发性硬化症诊所样本中验证患者激活度量及其对护理的影响。
Disabil Rehabil. 2010;32(19):1558-67. doi: 10.3109/09638280903567885.

参与促进生活方式改变的项目与多发性硬化症患者更好的患者报告结局相关。

Engagement in a program promoting lifestyle modification is associated with better patient-reported outcomes for people with MS.

作者信息

Hadgkiss Emily J, Jelinek George A, Taylor Keryn L, Marck Claudia H, van der Meer Dania M, Pereira Naresh G, Weiland Tracey J

机构信息

Emergency Practice Innovation Centre, St Vincent's Hospital Melbourne, PO Box 2900, Fitzroy, VIC, 3065, Australia,

出版信息

Neurol Sci. 2015 Jun;36(6):845-52. doi: 10.1007/s10072-015-2089-1. Epub 2015 Feb 1.

DOI:10.1007/s10072-015-2089-1
PMID:25638416
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4454831/
Abstract

There is increasing interest in patient-centered approaches to chronic disease management and prevention. For people with multiple sclerosis (PwMS), patient empowerment plays a role in improving a range of health-related outcomes. This study aimed to compare health-related quality of life (HRQOL), fatigue, and depression risk between people who have and have not attended a week-long physician-led residential educational retreat or accessed other self-help resources (a book and online content) that foster patient empowerment including the adoption of healthy lifestyle behaviors. PwMS were recruited to the study using online platforms and asked to complete a comprehensive online survey. Data from 2,233 respondents were analysed. Bivariate results indicated that PwMS who had attended a retreat (n = 247), read the associated book (n = 1,167) or regularly visited online sites promoting lifestyle modification (n = 795), had better HRQOL and lower rates of depression and fatigue than those who had not. The depression risk among retreat attendees (8.6 %) was around half that of the whole sample. Regression analysis showed that, controlling for age and gender, compared to the highest level of engagement, no engagement with the resources was associated with nearly threefold higher odds of clinically significant fatigue, tenfold higher odds of depression risk, and physical and mental HRQOL scores 19.5 and 15.6 points lower, respectively. These results are congruent with previously reported post-retreat improvements in HRQOL, and strongly support a role for patient engagement in resources promoting lifestyle modification. Physicians should encourage more active involvement of PwMS in their own health care.

摘要

以患者为中心的慢性病管理和预防方法越来越受到关注。对于多发性硬化症患者(PwMS)而言,患者赋权在改善一系列与健康相关的结果方面发挥着作用。本研究旨在比较参加过为期一周的由医生主导的住院教育休养活动或获取过其他有助于患者赋权(包括采用健康生活方式行为)的自助资源(一本书和在线内容)的患者与未参加或未获取这些资源的患者在健康相关生活质量(HRQOL)、疲劳和抑郁风险方面的差异。通过在线平台招募PwMS参与研究,并要求他们完成一项全面的在线调查。对2233名受访者的数据进行了分析。双变量结果表明,参加过休养活动的PwMS(n = 247)、阅读过相关书籍的PwMS(n = 1167)或经常访问促进生活方式改变的在线网站的PwMS(n = 795),其HRQOL更好,抑郁和疲劳发生率更低。参加休养活动的患者的抑郁风险(8.6%)约为整个样本的一半。回归分析表明,在控制年龄和性别后,与最高参与程度相比,未参与这些资源与临床上显著疲劳的几率高出近三倍、抑郁风险的几率高出十倍以及身体和心理HRQOL得分分别低19.5分和15.6分相关。这些结果与先前报道的休养活动后HRQOL的改善情况一致,并有力地支持了患者参与促进生活方式改变的资源的作用。医生应鼓励PwMS更积极地参与自身的医疗保健。