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瑞典多发性硬化症女性的工作场所与社会支持、治疗满意度及其对生活质量的影响:一项横断面调查研究。

Workplace and social support, treatment satisfaction, and their impact on quality of life in Swedish women with multiple sclerosis: a cross-sectional survey study.

作者信息

Machado Alejandra, Wredendal Elin, Fink Katharina, Friberg Emilie

机构信息

Division of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, SE-171 77, Stockholm, Sweden

Bristol Myers Squibb, Stockholm, Sweden.

出版信息

BMJ Open. 2024 Dec 20;14(12):e087563. doi: 10.1136/bmjopen-2024-087563.

DOI:10.1136/bmjopen-2024-087563
PMID:39806622
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11667484/
Abstract

OBJECTIVE

To evaluate health-related quality of life (HRQoL), in relation to support from work, social, as well as treatment satisfaction, in women with multiple sclerosis (MS). Further, to predict the satisfaction on these support dimensions based on sociodemographic and clinical variables.

DESIGN

Cross-sectional survey: a web-based questionnaire conducted in 2021 of people with MS (PwMS) linked to Nationwide Swedish registers.

SETTING

Sweden.

PARTICIPANTS

Working women with MS, living in Sweden, aged 20-50 responding to the survey during the spring of 2021 (n=2967).

OUTCOME MEASURES

Health-related quality of life was measured using the EuroQol Visual Analogue Scale (EQ-VAS). Linear regression models were applied to estimate the association between demographic and clinical factors, as well as reported survey answers with HRQoL. Odds of perceived satisfactory support in one, two or all three support dimensions (work, social or treatment) were performed with multinomial logistic regressions.

RESULTS

Lower MS severity and fatigue, higher cognitive processing speed, living in cities and higher educational attainment were individually associated with higher levels of HRQoL (p<0.001). Contrary, lower HRQoL was associated with progressive type of MS, self-reported visible or invisible symptoms, and no or unsatisfactory support from work, social and treatment (p<0.001). When explored altogether, higher levels in HRQoL were predominantly explained by lower MS severity (t=-9.318, p<0.001), less fatigue (t=-22.190, p<0.001) and more support from work (t=4.824, p<0.001) and to some extent, social support (t=-2.448, p=0.014). Further, compared with women who reported no support, those experiencing lower fatigue and receiving ongoing treatment were more likely to receive support in one or more of all three dimensions (work, social and satisfaction with their treatment). In contrast, higher HRQoL (OR=1.033; CI=1.015 to 1.052) was only significant when receiving simultaneous support from all three support dimensions.

CONCLUSION

Clinical factors and support from work and social support are the strongest contributors to HRQoL in working women with MS. Further, support across several life dimensions is essential when assessing HRQoL. Particularly, satisfaction with the perceived support from work, which plays a crucial role in the HRQoL of women with MS. This underscores the importance of prioritising clinical management and strong support systems to significantly improve HRQoL outcomes in patients with MS.

摘要

目的

评估多发性硬化症(MS)女性患者与工作支持、社会支持以及治疗满意度相关的健康相关生活质量(HRQoL)。此外,根据社会人口统计学和临床变量预测这些支持维度的满意度。

设计

横断面调查:2021年对与瑞典全国登记册相关联的MS患者(PwMS)进行的基于网络的问卷调查。

地点

瑞典。

参与者

2021年春季居住在瑞典、年龄在20至50岁之间且对调查做出回应的在职MS女性(n = 2967)。

结局指标

使用欧洲五维度健康量表视觉模拟量表(EQ-VAS)测量健康相关生活质量。应用线性回归模型估计人口统计学和临床因素以及报告的调查答案与HRQoL之间的关联。通过多项逻辑回归分析在一个、两个或所有三个支持维度(工作、社会或治疗)中感知到满意支持的几率。

结果

较低的MS严重程度和疲劳程度、较高的认知处理速度、居住在城市以及较高的教育程度分别与较高水平的HRQoL相关(p < 0.001)。相反,较低的HRQoL与MS的进展型、自我报告的可见或不可见症状以及工作、社会和治疗方面无支持或支持不满意相关(p < 0.001)。综合探讨时,HRQoL的较高水平主要由较低的MS严重程度(t = -9.318,p < 0.001)、较少的疲劳(t = -22.190,p < 0.001)以及工作方面更多的支持(t = 4.824,p < 0.001)以及在一定程度上社会支持(t = -2.448,p = 0.014)所解释。此外,与报告无支持的女性相比,经历较低疲劳且正在接受治疗的女性更有可能在所有三个维度(工作、社会和对治疗的满意度)中的一个或多个维度获得支持。相比之下,仅在从所有三个支持维度同时获得支持时,较高的HRQoL(OR = 1.033;CI = 1.015至·1.052)才具有统计学意义。

结论

临床因素以及工作支持和社会支持是在职MS女性HRQoL的最强影响因素。此外,在评估HRQoL时,跨多个生活维度的支持至关重要。特别是,对工作中感知到的支持的满意度在MS女性的HRQoL中起着关键作用。这强调了优先进行临床管理和强大支持系统以显著改善MS患者HRQoL结果的重要性。

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本文引用的文献

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Preferences, Adherence, and Satisfaction: Three Years of Treatment Experiences of People with Multiple Sclerosis.偏好、依从性和满意度:多发性硬化症患者三年的治疗经历
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Gender differences in earnings among people with multiple sclerosis and associations with type of occupation and family composition: A population-based study with matched references.
多发性硬化症患者的收入存在性别差异,且与职业类型和家庭构成有关:一项基于人群的匹配对照研究。
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Mult Scler Relat Disord. 2023 Feb;70:104481. doi: 10.1016/j.msard.2022.104481. Epub 2022 Dec 23.
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Brain. 2022 Sep 14;145(9):3147-3161. doi: 10.1093/brain/awac016.
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Longitudinal study of patients' health-related quality of life using EQ-5D-3L in 11 Swedish National Quality Registers.在11个瑞典国家质量登记处使用EQ-5D-3L对患者健康相关生活质量进行的纵向研究。
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