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针对患有风湿性和肌肉骨骼疾病的年轻人的以人为本的护理:年轻风湿病学家和欧洲抗风湿病联盟青年患者与研究参与小组的观点

Person-focused care for young people with rheumatic and musculoskeletal diseases: young rheumatologists' and EULAR Young PARE perspectives.

作者信息

Alunno Alessia, Studenic Paul, Nikiphorou Elena, Balážová Petra, van Nieuwkoop Linda, Ramiro Sofia, Carubbi Francesco, Richez Christophe, Caeyers Nele, Gossec Laure, Kouloumas Marios

机构信息

Rheumatology Unit, Department of Medicine, University of Perugia, Perugia, Italy.

Division of Rheumatology, Department of Internal Medicine 3, Medical University Vienna, Vienna, Austria.

出版信息

RMD Open. 2017 Sep 26;3(2):e000514. doi: 10.1136/rmdopen-2017-000514. eCollection 2017.

Abstract

In recent years, the evolution of healthcare challenged the management of people with rheumatic and musculoskeletal diseases (RMDs). From disease-centred care to person-focused care, a holistic approach along with patient empowerment about their disease, improved the physician-patient relationship and allowed to achieve better outcomes with lower healthcare costs. Nevertheless, RMDs may occur from childhood to the old age and to date very few studies have addressed the needs and priorities of young people with RMDs. However, the image of RMDs is still associated with the elderly population. In this regard, the group of young people with arthritis and rheumatism in Europe (PARE) was recently developed within European League Against Rheumatism to represent the voice of the young affected and to carry out projects aiming for a better understanding of these specific aspects. This viewpoint discusses the needs and priorities of young people compared with adult people with RMDs, based on the available literature and on the results of the PARE Youth research project, aiming to identify the next steps of actions that need to be taken to improve the current situation.

摘要

近年来,医疗保健的发展对风湿性和肌肉骨骼疾病(RMD)患者的管理提出了挑战。从以疾病为中心的护理转向以患者为中心的护理,一种整体方法以及患者对自身疾病的赋权,改善了医患关系,并能够以更低的医疗成本取得更好的治疗效果。然而,RMD可发生于从儿童到老年的各个年龄段,迄今为止,很少有研究关注患有RMD的年轻人的需求和优先事项。然而,RMD的形象仍然与老年人群体相关联。在这方面,欧洲抗风湿病联盟最近成立了欧洲关节炎和风湿病青年组织(PARE),以代表受影响年轻人的声音,并开展旨在更好地理解这些特定方面的项目。本观点基于现有文献和PARE青年研究项目的结果,讨论了与成年RMD患者相比,年轻人的需求和优先事项,旨在确定为改善当前状况需要采取的下一步行动。

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