• 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

相似文献

1
Unmet care needs of people with a neurological chronic disease: a cross-sectional study in Italy on Multiple Sclerosis.神经慢性疾病患者未满足的护理需求:意大利一项关于多发性硬化症的横断面研究
Eur J Public Health. 2015 Oct;25(5):775-80. doi: 10.1093/eurpub/ckv065. Epub 2015 Mar 30.
2
Disparity between perceived needs and service provision: a cross-sectional study of Italians with multiple sclerosis.感知需求与服务提供之间的差距:一项横断面研究意大利多发性硬化症患者。
Neurol Sci. 2019 Jun;40(6):1137-1144. doi: 10.1007/s10072-019-03780-z. Epub 2019 Feb 27.
3
Perceived needs and satisfaction with care in people with multiple sclerosis: a two-year prospective study.多发性硬化症患者对护理的感知需求与满意度:一项为期两年的前瞻性研究。
BMC Neurol. 2008 Sep 29;8:36. doi: 10.1186/1471-2377-8-36.
4
Unmet needs of multiple sclerosis patients in the community.社区中多发性硬化症患者未满足的需求。
Mult Scler Relat Disord. 2015 Mar;4(2):144-50. doi: 10.1016/j.msard.2015.01.003. Epub 2015 Feb 3.
5
Unmet needs influence health-related quality of life in people with multiple sclerosis.未满足的需求会影响多发性硬化症患者的健康相关生活质量。
Mult Scler Relat Disord. 2020 Feb;38:101877. doi: 10.1016/j.msard.2019.101877. Epub 2019 Nov 29.
6
Disabled older people's use of health and social care services and their unmet care needs in six European countries.六个欧洲国家失能老年人对卫生和社会保健服务的使用情况及其未满足的护理需求。
Eur J Public Health. 2013 Dec;23(6):1032-8. doi: 10.1093/eurpub/cks190. Epub 2013 Jan 18.
7
A primary care-based needs assessment of people with multiple sclerosis.一项基于初级保健的多发性硬化症患者需求评估。
Br J Gen Pract. 2005 May;55(514):378-83.
8
Identifying definite patterns of unmet needs in patients with multiple sclerosis using unsupervised machine learning.使用无监督机器学习识别多发性硬化症患者未满足的需求的明确模式。
Neurol Sci. 2024 Jul;45(7):3333-3345. doi: 10.1007/s10072-024-07416-9. Epub 2024 Feb 23.
9
Socioeconomic status, social capital and self-reported unmet health care needs: A population-based study.社会经济地位、社会资本与自我报告的未满足医疗需求:一项基于人群的研究。
Scand J Public Health. 2017 May;45(3):212-221. doi: 10.1177/1403494816689345. Epub 2017 Mar 8.
10
The prevalence and correlates of supportive care needs in testicular cancer survivors: a cross-sectional study.睾丸癌幸存者的支持性护理需求的流行率及相关因素:一项横断面研究。
Psychooncology. 2013 Nov;22(11):2557-64. doi: 10.1002/pon.3323. Epub 2013 Jul 3.

引用本文的文献

1
The Illness-Related Distress Scale: development and psychometric evaluation of a new transdiagnostic measure.疾病相关困扰量表:一种新的跨诊断测量工具的开发与心理测量学评估
Psychol Med. 2025 Apr 28;55:e122. doi: 10.1017/S003329172500090X.
2
The Impact of Sample Storage on Blood Methylation: Towards Assessing Myelin Gene Methylation as a Biomarker for Progressive Multiple Sclerosis.样本存储对血液甲基化的影响:评估髓鞘基因甲基化作为进展性多发性硬化症生物标志物的研究。
Int J Mol Sci. 2024 Mar 19;25(6):3468. doi: 10.3390/ijms25063468.
3
Identifying definite patterns of unmet needs in patients with multiple sclerosis using unsupervised machine learning.使用无监督机器学习识别多发性硬化症患者未满足的需求的明确模式。
Neurol Sci. 2024 Jul;45(7):3333-3345. doi: 10.1007/s10072-024-07416-9. Epub 2024 Feb 23.
4
Reasons Patients With Primary Progressive Multiple Sclerosis Contact Their Specialist Nurses.原发性进行性多发性硬化症患者联系其专科护士的原因。
Int J MS Care. 2024 Jan-Feb;26(1):30-35. doi: 10.7224/1537-2073.2022-056. Epub 2024 Jan 5.
5
Factors associated with perceived social support of patients with multiple sclerosis.与多发性硬化症患者感知到的社会支持相关的因素。
Curr J Neurol. 2021 Apr 4;20(2):64-72. doi: 10.18502/cjn.v20i2.6741.
6
Challenges of patients with multiple sclerosis in receiving health care services in Iran.伊朗多发性硬化症患者在接受医疗服务方面面临的挑战。
Curr J Neurol. 2023 Jan 5;22(1):16-22. doi: 10.18502/cjn.v22i1.12612.
7
Evaluation of Clinical Practice Guidelines for Rare Diseases in Japan.日本罕见病临床实践指南评估
JMA J. 2022 Oct 17;5(4):460-470. doi: 10.31662/jmaj.2022-0094. Epub 2022 Sep 30.
8
The effect of nurse practitioner (NP-led) care on health-related quality of life in people with multiple sclerosis - a randomized trial.护士从业者(NP 主导)护理对多发性硬化症患者健康相关生活质量的影响 - 一项随机试验。
BMC Neurol. 2022 Jul 25;22(1):275. doi: 10.1186/s12883-022-02809-9.
9
Models of Care in Multiple Sclerosis: A Survey of Canadian Health Providers.多发性硬化症的护理模式:对加拿大医疗服务提供者的一项调查。
Front Neurol. 2022 May 20;13:904757. doi: 10.3389/fneur.2022.904757. eCollection 2022.
10
Disabled in Society - A Scoping Review on Persons Living with Multiple Sclerosis and Disability.社会中的残疾人——关于多发性硬化症患者与残疾的范围界定综述
J Multidiscip Healthc. 2022 Feb 24;15:375-390. doi: 10.2147/JMDH.S353347. eCollection 2022.

本文引用的文献

1
Economic impact of multiple sclerosis in Italy: focus on rehabilitation costs.意大利多发性硬化症的经济影响:聚焦康复成本。
Neurol Sci. 2015 Feb;36(2):227-34. doi: 10.1007/s10072-014-1925-z. Epub 2014 Aug 11.
2
Validation of the German version of the Schedule of Attitudes Toward Hastened Death (SAHD-D) with patients in palliative care.德语版临终加速死亡态度量表(SAHD-D)在姑息治疗患者中的效度验证
Palliat Support Care. 2015 Jun;13(3):713-23. doi: 10.1017/S1478951514000492. Epub 2014 May 22.
3
Effective communication at the point of multiple sclerosis diagnosis.多发性硬化症诊断时的有效沟通。
Mult Scler. 2014 Apr;20(4):397-402. doi: 10.1177/1352458514523061. Epub 2014 Feb 6.
4
What do multiple sclerosis patients and their caregivers perceive as unmet needs?多发性硬化症患者及其护理人员认为有哪些未满足的需求?
BMC Neurol. 2013 Nov 15;13:177. doi: 10.1186/1471-2377-13-177.
5
Future MS care: a consensus statement of the MS in the 21st Century Steering Group.未来多发性硬化症的治疗:21 世纪多发性硬化症指导小组的共识声明。
J Neurol. 2013 Feb;260(2):462-9. doi: 10.1007/s00415-012-6656-6. Epub 2012 Aug 31.
6
Human Experimentation: Code of Ethics of the World Medical Association (Declaration of Helsinki).人体实验:世界医学协会伦理准则(赫尔辛基宣言)
Can Med Assoc J. 1964 Sep 12;91(11):619.
7
Living with multiple sclerosis: longitudinal changes in employment and the importance of symptom management.多发性硬化症患者的生活:就业的纵向变化及症状管理的重要性。
J Neurol. 2010 Jun;257(6):926-36. doi: 10.1007/s00415-009-5441-7. Epub 2010 Jan 19.
8
What constitutes evidence-based patient information? Overview of discussed criteria.循证患者信息包括哪些内容?已讨论标准概述。
Patient Educ Couns. 2010 Mar;78(3):316-28. doi: 10.1016/j.pec.2009.10.029. Epub 2009 Dec 14.
9
Factors that influence the employment status of people with multiple sclerosis: a multi-national study.影响多发性硬化症患者就业状况的因素:一项多国家研究。
J Neurol. 2009 Dec;256(12):1989-96. doi: 10.1007/s00415-009-5225-0.
10
Employment in multiple sclerosis. Exiting and re-entering the work force.多发性硬化症患者的就业。离开和重新进入劳动力市场。
J Neurol. 2008 Sep;255(9):1354-60. doi: 10.1007/s00415-008-0910-y. Epub 2008 Jul 17.

神经慢性疾病患者未满足的护理需求:意大利一项关于多发性硬化症的横断面研究

Unmet care needs of people with a neurological chronic disease: a cross-sectional study in Italy on Multiple Sclerosis.

作者信息

Ponzio Michela, Tacchino Andrea, Zaratin Paola, Vaccaro Concetta, Battaglia Mario Alberto

机构信息

1 Scientific Research Area, Italian Multiple Sclerosis Foundation (FISM), Genoa, Italy.

1 Scientific Research Area, Italian Multiple Sclerosis Foundation (FISM), Genoa, Italy

出版信息

Eur J Public Health. 2015 Oct;25(5):775-80. doi: 10.1093/eurpub/ckv065. Epub 2015 Mar 30.

DOI:10.1093/eurpub/ckv065
PMID:25829501
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4582845/
Abstract

BACKGROUND

Community-based studies are required to accurately describe the supportive services needed by people with multiple sclerosis (MS).

METHODS

A total of 1205 people with MS participated in a cross-sectional study evaluating their unmet health and social care needs through a questionnaire collecting information used in the study. It was specifically developed by a multi-disciplinary team.

RESULTS

Overall, 79% of the responders declared at least one health or social care needs. The most prevalent health care need was the psychological support (27.5%), whereas the transport was the social care need more frequent (over 41%) in our sample. The multivariate analysis highlighted that unmet health care needs depended mainly on clinical factors such as disease stage, influenced by disease duration, and disability degree, whereas the social care needs were related to both clinical and socio-demographic factors.

CONCLUSION

These findings suggest that MS needs significantly change over time during the disease development and to find the best way to personalize PwMS management is crucial. Moreover, more public funding directed at improving the health-related quality of life of people with MS is needed. For this reason, we think that these results will provide important information and baseline data on how to build the national service strategies thereby making healthcare planning more efficient.

摘要

背景

需要开展基于社区的研究,以准确描述多发性硬化症(MS)患者所需的支持性服务。

方法

共有1205名MS患者参与了一项横断面研究,通过一份收集研究中所用信息的问卷来评估他们未满足的健康和社会护理需求。该问卷由一个多学科团队专门编制。

结果

总体而言,79%的受访者表示至少有一项健康或社会护理需求。最普遍的健康护理需求是心理支持(27.5%),而在我们的样本中,交通是最常见的社会护理需求(超过41%)。多变量分析强调,未满足的健康护理需求主要取决于临床因素,如受疾病持续时间影响的疾病阶段和残疾程度,而社会护理需求则与临床和社会人口学因素都有关。

结论

这些发现表明,MS患者的需求在疾病发展过程中会随时间显著变化,找到个性化管理MS患者的最佳方法至关重要。此外,需要更多公共资金用于改善MS患者的健康相关生活质量。因此,我们认为这些结果将为如何制定国家服务策略提供重要信息和基线数据,从而提高医疗保健规划的效率。