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《COVID-19 大流行期间青少年发病的风湿和肌肉骨骼疾病患者的适宜发展过渡性护理:立场声明的基本原理》

Developmentally appropriate transitional care during the Covid-19 pandemic for young people with juvenile-onset rheumatic and musculoskeletal diseases: the rationale for a position statement.

机构信息

Versus Arthritis Centre for Epidemiology; Centre for MSK Research, University of Manchester, Stopford Building, 2nd floor, Oxford Rd, Manchester, M13 9PT, UK.

NIHR Biomedical Research Centre, Manchester University Hospital NHS Trust, Manchester, UK.

出版信息

Pediatr Rheumatol Online J. 2021 Aug 25;19(1):136. doi: 10.1186/s12969-021-00609-y.

Abstract

BACKGROUND

The importance of developmentally appropriate transitional care in young people with juvenile-onset rheumatic and musculoskeletal disease is well recognised. The Paediatric Rheumatology European Society (PReS) / European League Against Rheumatism (EULAR) Taskforce has developed international recommendations and standards for transitional care and a growing evidence base supports the positive benefits of such care. However, there is also evidence that universal implementation has yet to be realised. In 2020, against this background the COVID-19 pandemic arrived with significant impact on all our lives, young and old, patient, public and professional alike. The unfortunate reality of the pandemic with potential for unfavourable outcomes on healthcare provision during transition was acknowledged by the PReS working groups in a position statement to support healthcare professionals, young people and their caregivers.

AIM

The aim of this review is to present the literature which provides the rationale for the recommendations in the PReS Position Statement. The following areas are specifically addressed: the prime importance of care coordination; the impact of the pandemic on the various aspects of the transition process; the importance of ensuring continuity of medication supply; the pros and cons of telemedicine with young people; ensuring meaningful involvement of young people in service development and the importance of core adolescent health practices such as routine developmental assessment psychosocial screening and appropriate parental involvement during transitional care.

摘要

背景

青少年发病的风湿和肌肉骨骼疾病患者的发展适宜过渡性护理的重要性已得到广泛认可。儿科风湿病欧洲学会(PReS)/欧洲抗风湿病联盟(EULAR)工作组已经制定了过渡性护理的国际建议和标准,并且越来越多的证据支持这种护理的积极益处。然而,也有证据表明,这种护理尚未普及。2020 年,在这种背景下,COVID-19 大流行爆发,对我们所有人的生活,包括年轻人和老年人、患者、公众和专业人士都产生了重大影响。PReS 工作组在一份支持医疗保健专业人员、年轻人及其照顾者的立场声明中承认了大流行的不幸现实,以及它可能对过渡期间的医疗保健服务提供产生不利影响。

目的

本综述旨在介绍为 PReS 立场声明中的建议提供依据的文献。特别讨论了以下几个方面:护理协调的首要重要性;大流行对过渡过程各个方面的影响;确保药物供应连续性的重要性;远程医疗在年轻人中的利弊;确保年轻人参与服务开发的意义以及核心青少年保健实践的重要性,如常规发育评估、心理社会筛查以及在过渡性护理期间适当的父母参与。

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