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儿科风湿病学未能达到当前标准,呼吁利用数字健康技术实现儿童青少年特发性关节炎患者的健康公平。

Paediatric Rheumatology Fails to Meet Current Benchmarks, a Call for Health Equity for Children Living with Juvenile Idiopathic Arthritis, Using Digital Health Technologies.

机构信息

School of Bioscience and Pharmacy, University of Newcastle, 10 Chittaway Rd, Ourimbah, NSW, 2258, Australia.

School of Health Sciences, Queen Margaret University, Musselburgh, EH21 6UU, UK.

出版信息

Curr Rheumatol Rep. 2024 Jun;26(6):214-221. doi: 10.1007/s11926-024-01145-w. Epub 2024 Mar 11.

Abstract

PURPOSE OF REVIEW

This critical review begins by presenting the history of Juvenile Idiopathic Arthritis (JIA) management. To move the conversation forward in addressing the current shortcomings that exist in the clinical management of children living with JIA, we argue that to date, the advancement of successful treatments for JIA has been historically slow. Factors implicated in this situation include a lack of rigorous research, JIA being considered a rare disease, and JIA's idiopathic and complex pathophysiology.

RECENT FINDINGS

Despite the well-intended legislative changes to increase paediatric research, and the major advancements seen in molecular medicine over the last 30 years, globally, paediatric rheumatology services are still failing to meet the current benchmarks of best practice. Provoking questions on how the longstanding health care disparities of poor access and delayed treatment for children living with JIA can be improved, to improve healthcare outcomes. Globally, paediatric rheumatology services are failing to meet the current benchmarks of best practice. Raising awareness of the barriers hindering JIA management is the first step in reducing the current health inequalities experienced by children living with JIA. Action must be taken now, to train and well-equip the paediatric rheumatology interdisciplinary workforce. We propose, a resource-efficient way to improve the quality of care provided could be achieved by embedding digital health into clinical practice, to create an integrative care model between the children, general practice and the paediatric rheumatology team. To improve fragmented service delivery and the coordination of interdisciplinary care, across the healthcare system.

摘要

目的综述

本综述首先介绍了幼年特发性关节炎(JIA)管理的历史。为了推进目前儿童 JIA 临床管理中存在的不足的讨论,我们认为,迄今为止,JIA 的成功治疗方法的进展一直较为缓慢。造成这种情况的因素包括缺乏严格的研究、JIA 被认为是一种罕见病,以及 JIA 的特发性和复杂的病理生理学。

最新发现

尽管为了增加儿科研究而进行了善意的立法改革,并且在过去 30 年中分子医学取得了重大进展,但在全球范围内,儿科风湿病服务仍然未能达到最佳实践的当前基准。这引发了一些问题,即如何改善儿童 JIA 治疗的长期保健差距,以改善医疗保健结果。全球范围内,儿科风湿病服务都未能达到最佳实践的当前基准。提高对阻碍 JIA 管理的障碍的认识,是减少儿童 JIA 目前面临的健康不平等的第一步。现在必须采取行动,培训和装备好儿科风湿病学跨学科的工作人员。我们建议,通过将数字健康嵌入临床实践中,可以以资源高效的方式来提高所提供的护理质量,从而在儿童、全科医生和儿科风湿病学团队之间建立综合护理模式。以改善医疗保健系统中服务提供的碎片化和跨学科护理的协调。

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Pediatric rheumatology in Africa: thriving amidst challenges.儿科风湿病学在非洲:在挑战中茁壮成长。
Pediatr Rheumatol Online J. 2021 May 7;19(1):69. doi: 10.1186/s12969-021-00557-7.

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