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[针对风湿性疾病年轻患者护理的新支持服务]

[New support services for the care of young patients with rheumatic diseases].

作者信息

Schalm S, Niewerth M, Minden K

机构信息

Jugend- und Transitionssprechstunde im SPZ des Dr. von Haunerschen Kinderspital, Ludwig-Maximilian Universität München, Lindwurmstr. 4, 80334, München, Deutschland.

Rheumatologie im Endokrinologikum München, München, Deutschland.

出版信息

Z Rheumatol. 2018 Oct;77(8):685-693. doi: 10.1007/s00393-018-0547-x.

DOI:10.1007/s00393-018-0547-x
PMID:30251111
Abstract

The transition process from pediatric to adult rheumatological and internistic care is a challenge for patients and medical personnel. Every second patient with a pediatric rheumatic disease has not achieved stable drug-free remission at early adulthood and therefore requires continuing rheumatological care. Approximately one third of young people with rheumatic diseases in Germany discontinue regular specialist care on their way to the adult healthcare setting. Newly developed support services and tools to improve the healthcare of young people with rheumatic diseases in Germany are presented.

摘要

从儿科到成人风湿病学及内科护理的过渡过程,对患者和医务人员来说都是一项挑战。每两名患有儿科风湿性疾病的患者中,就有一名在成年早期未实现稳定的无药缓解,因此需要持续的风湿病护理。在德国,约三分之一患有风湿性疾病的年轻人在进入成人医疗体系的过程中停止了定期专科护理。本文介绍了德国新开发的旨在改善患有风湿性疾病的年轻人医疗保健状况的支持服务和工具。

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2
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本文引用的文献

1
Disease activity and dropout in young persons with juvenile idiopathic arthritis in transition of care: a longitudinal observational study.青少年特发性关节炎患者转诊期间的疾病活动与退出情况:一项纵向观察性研究。
Clin Exp Rheumatol. 2018 Jan-Feb;36(1):163-168. Epub 2018 Jan 31.
2
Are we there yet? An update on transitional care in rheumatology.我们到了吗?风湿病学中转医疗的最新进展。
Arthritis Res Ther. 2018 Jan 11;20(1):5. doi: 10.1186/s13075-017-1502-y.
3
Adaptation and validation of the German Patient Activation Measure for adolescents with chronic conditions in transitional care: PAM 13 for Adolescents.
德国慢性病青少年过渡性护理患者激活量表的改编与验证:青少年PAM 13量表
Res Nurs Health. 2018 Feb;41(1):78-87. doi: 10.1002/nur.21831. Epub 2017 Dec 20.
4
Assessment of transition readiness in adolescents and young adults with chronic health conditions.对患有慢性健康状况的青少年和青年成人的过渡准备情况进行评估。
Pediatr Rheumatol Online J. 2017 Sep 9;15(1):70. doi: 10.1186/s12969-017-0197-6.
5
How common is remission in juvenile idiopathic arthritis: A systematic review.幼年特发性关节炎缓解的发生率有多高:系统评价。
Semin Arthritis Rheum. 2017 Dec;47(3):331-337. doi: 10.1016/j.semarthrit.2017.05.007. Epub 2017 May 20.
6
Transitional care for rheumatic conditions in Europe: current clinical practice and available resources.欧洲风湿性疾病的过渡性护理:当前临床实践与可用资源
Pediatr Rheumatol Online J. 2017 Jun 9;15(1):49. doi: 10.1186/s12969-017-0179-8.
7
Transition to adult rheumatology care is necessary to maintain DMARD therapy in young people with juvenile idiopathic arthritis.青少年特发性关节炎患者需要过渡到成人风湿病学治疗,以维持 DMARD 治疗。
Semin Arthritis Rheum. 2017 Oct;47(2):269-275. doi: 10.1016/j.semarthrit.2017.05.003. Epub 2017 May 12.
8
Development and evaluation of a generic education program for chronic diseases in childhood.儿童慢性病通用教育项目的开发与评估
Patient Educ Couns. 2017 Jun;100(6):1153-1160. doi: 10.1016/j.pec.2017.01.001. Epub 2017 Jan 12.
9
EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases.EULAR/PReS 关于青少年发病的风湿性疾病患者过渡性照顾的标准和建议。
Ann Rheum Dis. 2017 Apr;76(4):639-646. doi: 10.1136/annrheumdis-2016-210112. Epub 2016 Nov 1.
10
[Conception and Measurement of Health-related Transition Competence for Adolescents with Chronic Conditions - Development and Testing of a Self-Report Instrument].[慢性病青少年健康相关过渡能力的概念与测量——一种自我报告工具的开发与测试]
Gesundheitswesen. 2017 Jun;79(6):491-496. doi: 10.1055/s-0035-1549986. Epub 2015 Aug 13.