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Supporting a person-centred approach in clinical guidelines. A position paper of the Allied Health Community - Guidelines International Network (G-I-N).支持临床指南中以人为本的方法。联合健康社区-指南国际网络(G-I-N)的立场文件。
Health Expect. 2015 Oct;18(5):1543-58. doi: 10.1111/hex.12144. Epub 2013 Oct 14.
2
Placebo and the new physiology of the doctor-patient relationship.安慰剂与医患关系的新生理学。
Physiol Rev. 2013 Jul;93(3):1207-46. doi: 10.1152/physrev.00043.2012.
3
Patient autonomy in multiple sclerosis--possible goals and assessment strategies.多发性硬化症中的患者自主性——可能的目标和评估策略。
J Neurol Sci. 2013 Aug 15;331(1-2):2-9. doi: 10.1016/j.jns.2013.02.018. Epub 2013 May 25.
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Do generic utility measures capture what is important to the quality of life of people with multiple sclerosis?通用效用测量工具能否捕捉到多发性硬化症患者生活质量的重要方面?
Health Qual Life Outcomes. 2013 Apr 25;11:71. doi: 10.1186/1477-7525-11-71.
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Risk of multiple sclerosis following clinically isolated syndrome: a 4-year prospective study.临床孤立综合征后多发性硬化症的风险:一项 4 年前瞻性研究。
J Neurol. 2013 Jun;260(6):1583-93. doi: 10.1007/s00415-013-6838-x. Epub 2013 Feb 3.
6
Predictors of quality of life among multiple sclerosis patients: a comprehensive analysis.多发性硬化症患者生活质量的预测因素:综合分析。
Eur J Neurol. 2013 May;20(5):756-64. doi: 10.1111/ene.12046. Epub 2013 Jan 8.
7
Effect of the disclosure of MS diagnosis on anxiety, mood and quality of life of patients: a prospective study.多发性硬化症诊断披露对患者焦虑、情绪和生活质量的影响:一项前瞻性研究。
Int J Clin Pract. 2012 May;66(5):504-14. doi: 10.1111/j.1742-1241.2012.02912.x.
8
Evidence Based Medicine and Shared Decision Making: the challenge of getting both evidence and preferences into health care.循证医学与共同决策:将证据和偏好纳入医疗保健的挑战。
Patient Educ Couns. 2008 Dec;73(3):407-12. doi: 10.1016/j.pec.2008.07.054. Epub 2008 Oct 8.
9
Predictors of drop-out from an outpatient cardiac rehabilitation programme.门诊心脏康复项目退出的预测因素。
Clin Rehabil. 2007 Mar;21(3):222-9. doi: 10.1177/0269215506070771.
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Health psychology: psychological adjustment to chronic disease.健康心理学:对慢性病的心理调适。
Annu Rev Psychol. 2007;58:565-92. doi: 10.1146/annurev.psych.58.110405.085615.

在多发性硬化症诊断披露后评估主观生活质量领域。

Assessing subjective quality of life domains after multiple sclerosis diagnosis disclosure.

作者信息

Mattarozzi Katia, Casini Federica, Baldin Elisa, Baldini Martina, Lugaresi Alessandra, Milani Paola, Pietrolongo Erika, Gajofatto Alberto, Leone Maurizio, Riise Trond, Vignatelli Luca, D'Alessandro Roberto

机构信息

Department of Experimental, Diagnostic and Specialty Medicine, University of Bologna, Bologna, Italy.

IRCCS Institute of Neurological Sciences of Bologna, Bologna, Italy.

出版信息

Health Expect. 2016 Apr;19(2):437-47. doi: 10.1111/hex.12367. Epub 2015 Apr 24.

DOI:10.1111/hex.12367
PMID:25912002
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5055281/
Abstract

BACKGROUND AND OBJECTIVE

An investigation of the domains Italian patients with multiple sclerosis (MS) named as constituting their quality of life over time.

DESIGN

We assessed, in 68 patients, QoL domains using the Schedule for the Evaluation of Individual QoL: (a) before MS diagnosis disclosure, (b) thirty days after disclosure, and (c) after one and (d) four years' follow-up.

RESULTS

The life domains most frequently named by patients were as follows: Family, Work and Finance, Hobbies, Health, Relationship with Friends and Job Effectiveness. Only Health and Job Effectiveness domains varied with time. The Health domain became a critical dimension when MS diagnosis was revealed. In addition, patients tended to be more satisfied with their health after disclosure compared to pre-diagnosis. Job Effectiveness seemed to be an important aspect until 1 year after diagnosis disclosure, but it tended to become less crucial over time. Family seems to be the most important domain over time, and psychological adaptation to MS seems to be characterized by a reconceptualization of aspects that revolve around oneself, such as professional success, rather than relational or affective factors.

CONCLUSIONS

Evaluating the most relevant life domains for patients and their alteration over time may provide practitioners with an important tool in making health-related decisions, thus improving health outcomes and QoL.

摘要

背景与目的

调查意大利多发性硬化症(MS)患者随时间推移所认为的构成其生活质量的领域。

设计

我们使用个人生活质量评估量表对68名患者的生活质量领域进行了评估:(a)在MS诊断披露前,(b)披露后30天,以及(c)随访1年和(d)4年后。

结果

患者最常提及的生活领域如下:家庭、工作与财务、爱好、健康、与朋友的关系以及工作效能。只有健康和工作效能领域随时间变化。在MS诊断被披露时,健康领域成为一个关键维度。此外,与诊断前相比,患者在披露后对自身健康往往更满意。工作效能在诊断披露后1年内似乎是一个重要方面,但随着时间推移其重要性趋于降低。随着时间推移,家庭似乎是最重要的领域,而对MS的心理适应似乎以围绕自身的方面(如职业成功)的重新概念化为特征,而非关系或情感因素。

结论

评估对患者最相关的生活领域及其随时间的变化,可能为从业者提供一个在做出与健康相关决策时的重要工具,从而改善健康结果和生活质量。