• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

多发性硬化症患者的生活质量评估:通过英国多发性硬化症登记处进行的 EQ-5D 调查。

How people with multiple sclerosis rate their quality of life: an EQ-5D survey via the UK MS register.

机构信息

College of Medicine, Swansea University, Swansea, Wales, United Kingdom.

出版信息

PLoS One. 2013 Jun 11;8(6):e65640. doi: 10.1371/journal.pone.0065640. Print 2013.

DOI:10.1371/journal.pone.0065640
PMID:23776516
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3679154/
Abstract

INTRODUCTION

The EQ-5D is a widely-used, standardised, quality of life measure producing health profiles, indices and states. The aims of this study were to assess the role of various factors in how people with Multiple Sclerosis rate their quality of life, based on responses to the EQ-5D received via the web portal of the UK MS Register.

METHODS

The 4516 responses to the EQ-5D (between May 2011 and April 2012) were collated with basic demographic and descriptive MS data and the resulting dataset was analysed in SPSS (v.20).

RESULTS

The mean health state for people with MS was 59.73 (SD 22.4, median 61), compared to the UK population mean of 82.48 (which is approximately 1SD above the cohort mean). The characteristics of respondents with high health states (at or above +1SD) were: better health profiles (most predictive dimension: Usual Activities), higher health indices, younger age, shorter durations of MS, female gender, relapsing-remitting MS, higher educational attainment and being in paid employment (all p-values<0.001). Conversely, the characteristics of respondents with low health states (at or below -1SD) were: poorer health profiles (most predictive dimension: Mobility), lower health indices, older age, longer durations of MS, male gender, progressive MS, lower educational attainment and having an employment status of sick/disabled (p = 0.0014 for age, all other p-values<0.001). Particular living arrangements were not associated with either the high or low health status groups.

CONCLUSIONS

This large-scale study has enabled in-depth analyses on how people with MS rate their quality of life, and it provides new knowledge on the various factors that contribute to their self-assessed health status. These findings demonstrate the impact of MS on quality of life, and they can be used to inform care provision and further research, to work towards enhancing the quality of life of people with MS.

摘要

简介

EQ-5D 是一种广泛使用的、标准化的生活质量衡量标准,可生成健康状况概况、指数和状态。本研究的目的是基于英国多发性硬化症登记处网络门户收到的 EQ-5D 应答,评估各种因素在多发性硬化症患者如何评价其生活质量方面的作用。

方法

2011 年 5 月至 2012 年 4 月期间,共收集了 4516 名多发性硬化症患者对 EQ-5D 的应答,同时收集了基本人口统计学和描述性多发性硬化症数据,并用 SPSS(v.20)对数据集进行了分析。

结果

多发性硬化症患者的平均健康状况为 59.73(标准差 22.4,中位数 61),而英国普通人群的平均健康状况为 82.48(约为队列平均水平的 1SD 以上)。健康状况良好(高于或等于+1SD)的受访者的特征为:更好的健康状况概况(最具预测性维度:日常活动)、更高的健康指数、更年轻的年龄、较短的多发性硬化症病程、女性、缓解-复发型多发性硬化症、更高的教育程度和有薪就业(所有 p 值均<0.001)。相反,健康状况较差(低于或等于-1SD)的受访者的特征为:较差的健康状况概况(最具预测性维度:行动能力)、较低的健康指数、较年长的年龄、较长的多发性硬化症病程、男性、进行性多发性硬化症、较低的教育程度和有患病/残疾的就业状况(年龄 p=0.0014,所有其他 p 值均<0.001)。特定的生活安排与健康状况良好或较差的组均无关联。

结论

这项大规模研究深入分析了多发性硬化症患者如何评价其生活质量,为影响其自我评估健康状况的各种因素提供了新的认识。这些发现表明多发性硬化症对生活质量的影响,并可用于为提供护理和进一步研究提供信息,以提高多发性硬化症患者的生活质量。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c75a/3679154/bf879b54fd21/pone.0065640.g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c75a/3679154/bf879b54fd21/pone.0065640.g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c75a/3679154/bf879b54fd21/pone.0065640.g001.jpg

相似文献

1
How people with multiple sclerosis rate their quality of life: an EQ-5D survey via the UK MS register.多发性硬化症患者的生活质量评估:通过英国多发性硬化症登记处进行的 EQ-5D 调查。
PLoS One. 2013 Jun 11;8(6):e65640. doi: 10.1371/journal.pone.0065640. Print 2013.
2
The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS.通过网络门户从多发性硬化症患者处收集信息用于英国多发性硬化症登记处的可行性:多发性硬化症患者队列的特征。
BMC Med Inform Decis Mak. 2012 Jul 18;12:73. doi: 10.1186/1472-6947-12-73.
3
A large-scale study of anxiety and depression in people with Multiple Sclerosis: a survey via the web portal of the UK MS Register.一项针对多发性硬化症患者焦虑和抑郁的大规模研究:通过英国多发性硬化症注册中心的网络门户进行的调查。
PLoS One. 2012;7(7):e41910. doi: 10.1371/journal.pone.0041910. Epub 2012 Jul 30.
4
Health Utilities for Multiple Sclerosis.多发性硬化症的健康效用
Value Health. 2016 Jun;19(4):460-8. doi: 10.1016/j.jval.2016.01.002. Epub 2016 Mar 10.
5
Population-level norm values by EQ-5D-3L in Hungary - a comparison of survey results from 2022 with those from 2000.匈牙利基于 EQ-5D-3L 的人群标准值 - 2022 年调查结果与 2000 年调查结果的比较。
Qual Life Res. 2024 Sep;33(9):2417-2428. doi: 10.1007/s11136-024-03699-9. Epub 2024 Jun 5.
6
Health-related quality of life measured using the EQ-5D-5L: South Australian population norms.使用EQ-5D-5L量表测量的健康相关生活质量:南澳大利亚州人群常模。
Health Qual Life Outcomes. 2016 Sep 20;14(1):133. doi: 10.1186/s12955-016-0537-0.
7
The physical and psychological impact of multiple sclerosis using the MSIS-29 via the web portal of the UK MS Register.通过英国多发性硬化症注册中心的网络门户使用 MSIS-29 评估多发性硬化症的身心影响。
PLoS One. 2013;8(1):e55422. doi: 10.1371/journal.pone.0055422. Epub 2013 Jan 31.
8
Estimating the disutility of relapse in relapsing-remitting and secondary progressive multiple sclerosis using the EQ-5D-5L, AQoL-8D, EQ-5D-5L-psychosocial, and SF-6D: implications for health economic evaluation models.使用 EQ-5D-5L、AQoL-8D、EQ-5D-5L-psychosocial 和 SF-6D 评估复发缓解型和继发进展型多发性硬化的复发失能程度:对健康经济评价模型的影响。
Qual Life Res. 2023 Dec;32(12):3373-3387. doi: 10.1007/s11136-023-03486-y. Epub 2023 Jul 31.
9
Using the EQ-5D-5L to investigate quality-of-life impacts of disease-modifying therapy policies for people with multiple sclerosis (MS) in New Zealand.采用 EQ-5D-5L 量表评估新西兰多发性硬化症患者疾病修正治疗政策对生活质量的影响。
Eur J Health Econ. 2023 Aug;24(6):939-950. doi: 10.1007/s10198-022-01518-x. Epub 2022 Sep 23.
10
Quality of life is decreased in persons with relapsing-remitting multiple sclerosis experiencing progression independent of relapse activity.复发缓解型多发性硬化症患者中,与复发活动无关的病情进展会导致生活质量下降。
Mult Scler. 2025 Apr;31(5):548-557. doi: 10.1177/13524585251318516. Epub 2025 Feb 18.

引用本文的文献

1
Health-related quality of life of patients with multiple sclerosis in China: a national online survey.中国多发性硬化症患者的健康相关生活质量:一项全国性在线调查。
Health Qual Life Outcomes. 2025 Jul 9;23(1):70. doi: 10.1186/s12955-025-02376-w.
2
Patient-reported outcomes of quality of life before and after autologous hematopoietic stem cell transplantation for multiple sclerosis.多发性硬化症自体造血干细胞移植前后患者报告的生活质量结果。
Mult Scler. 2025 Apr;31(4):455-463. doi: 10.1177/13524585251315363. Epub 2025 Feb 17.
3
Sociodemographic and Clinical Determinants of the Quality of Life of Moroccan People With Multiple Sclerosis.

本文引用的文献

1
Desirability and expectations of the UK MS Register: views of people with MS.英国多发性硬化症登记册的可取性和期望:多发性硬化症患者的观点。
Int J Med Inform. 2013 Nov;82(11):1104-10. doi: 10.1016/j.ijmedinf.2013.07.005. Epub 2013 Sep 7.
2
The physical and psychological impact of multiple sclerosis using the MSIS-29 via the web portal of the UK MS Register.通过英国多发性硬化症注册中心的网络门户使用 MSIS-29 评估多发性硬化症的身心影响。
PLoS One. 2013;8(1):e55422. doi: 10.1371/journal.pone.0055422. Epub 2013 Jan 31.
3
A platform for the remote conduct of gene-environment interaction studies.
摩洛哥多发性硬化症患者生活质量的社会人口学和临床决定因素
Int J MS Care. 2025 Jan 27;27(Q1):25-33. doi: 10.7224/1537-2073.2024-036. eCollection 2025 Jan.
4
Impact of Spinal CSF Leaks on Quality of Life and Mental Health and Long-Term Reversal by Surgical Closure.脊髓脑脊液漏对生活质量和心理健康的影响以及手术封闭的长期逆转作用
Neurol Clin Pract. 2024 Apr;14(2):e200272. doi: 10.1212/CPJ.0000000000200272. Epub 2024 Mar 15.
5
Effects of power training in older patients with multiple sclerosis on neurodegeneration, neuromuscular function, and physical function. A study protocol for the "power training in older multiple sclerosis patients (PoTOMS) randomized control trial.力量训练对老年多发性硬化症患者神经退行性变、神经肌肉功能和身体功能的影响。“老年多发性硬化症患者力量训练(PoTOMS)随机对照试验”的研究方案。
Contemp Clin Trials Commun. 2024 Feb 19;38:101279. doi: 10.1016/j.conctc.2024.101279. eCollection 2024 Apr.
6
Determining Current Medications Usage within a Cohort of Patients in the UK-A Descriptive Retrospective Study.确定英国一组患者当前的药物使用情况——一项描述性回顾性研究
Healthcare (Basel). 2022 Nov 30;10(12):2421. doi: 10.3390/healthcare10122421.
7
Application of eccentric training in various clinical populations: Protocol for a multi-centered pilot and feasibility study in people with low back pain and people with multiple sclerosis.不同临床人群中离心训练的应用:腰痛患者和多发性硬化症患者多中心先导和可行性研究方案。
PLoS One. 2022 Dec 22;17(12):e0270875. doi: 10.1371/journal.pone.0270875. eCollection 2022.
8
Comparison of employment among people with Multiple Sclerosis across Europe.欧洲多发性硬化症患者就业情况比较。
Mult Scler J Exp Transl Clin. 2022 Apr 27;8(2):20552173221090653. doi: 10.1177/20552173221090653. eCollection 2022 Apr-Jun.
9
Ascertaining Medication Use and Patient-Reported Outcomes via an App and Exploring Gamification in Patients With Multiple Sclerosis Treated With Interferon β-1b: Observational Study.通过应用程序确定药物使用情况和患者报告的结果,并探索干扰素β-1b治疗的多发性硬化症患者的游戏化:观察性研究。
JMIR Form Res. 2022 Mar 14;6(3):e31972. doi: 10.2196/31972.
10
Adult-Onset Leukoencephalopathy With Axonal Spheroids and Pigmented Glia: Review of Clinical Manifestations as Foundations for Therapeutic Development.成人起病的伴有轴突球状体和色素性神经胶质细胞的白质脑病:基于治疗发展的临床表现综述
Front Neurol. 2022 Feb 3;12:788168. doi: 10.3389/fneur.2021.788168. eCollection 2021.
用于远程开展基因-环境相互作用研究的平台。
PLoS One. 2013;8(1):e54331. doi: 10.1371/journal.pone.0054331. Epub 2013 Jan 18.
4
Employment status and the prevalence of poor self-rated health. Findings from UK individual-level repeated cross-sectional data from 1978 to 2004.就业状况与自评健康不良的流行程度。来自英国 1978 年至 2004 年个体水平重复横断面数据的研究结果。
BMJ Open. 2012 Dec 4;2(6). doi: 10.1136/bmjopen-2012-001342. Print 2012.
5
Commentary on 'disability outcome measures in multiple sclerosis clinical trials'.多发性硬化症临床试验中的残疾结局测量述评
Mult Scler. 2012 Dec;18(12):1718-20. doi: 10.1177/1352458512457847. Epub 2012 Sep 11.
6
A large-scale study of anxiety and depression in people with Multiple Sclerosis: a survey via the web portal of the UK MS Register.一项针对多发性硬化症患者焦虑和抑郁的大规模研究:通过英国多发性硬化症注册中心的网络门户进行的调查。
PLoS One. 2012;7(7):e41910. doi: 10.1371/journal.pone.0041910. Epub 2012 Jul 30.
7
The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS.通过网络门户从多发性硬化症患者处收集信息用于英国多发性硬化症登记处的可行性:多发性硬化症患者队列的特征。
BMC Med Inform Decis Mak. 2012 Jul 18;12:73. doi: 10.1186/1472-6947-12-73.
8
Changes in the key areas of quality of life associated with age and time since diagnosis of long-term conditions.与年龄以及自确诊长期病症以来的时间相关的生活质量关键领域的变化。
Chronic Illn. 2012 Jun;8(2):112-20. doi: 10.1177/1742395312436747. Epub 2012 Feb 3.
9
Catalogue of EQ-5D scores for the United Kingdom.英国 EQ-5D 量表评分目录。
Med Decis Making. 2011 Nov-Dec;31(6):800-4. doi: 10.1177/0272989X11401031. Epub 2011 Mar 21.
10
The public and the Internet: multifaceted drives for seeking health information.公众和互联网:寻求健康信息的多方面驱动力。
Health Informatics J. 2010 Jun;16(2):145-56. doi: 10.1177/1460458210364786.