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

IF 5.7 2区 医学 Q1 RHEUMATOLOGY
Sonia Butler, Dean Sculley, Derek Santos, Xavier Girones, Davinder Singh-Grewal, Andrea Coda
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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.

Summary

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.

儿科风湿病学未能达到当前基准,呼吁利用数字健康技术实现幼年特发性关节炎患儿的健康平等
综述目的 这篇重要的综述首先介绍了青少年特发性关节炎(JIA)的治疗历史。我们认为,迄今为止,JIA 成功治疗方法的进展历来十分缓慢。造成这种情况的因素包括缺乏严谨的研究、JIA 被认为是一种罕见疾病,以及 JIA 的特发性和复杂病理生理学。尽管立法改革的初衷是为了增加儿科研究,而且在过去 30 年中分子医学取得了重大进展,但在全球范围内,儿科风湿病学服务仍未能达到当前的最佳实践基准。该研究提出了一些问题,即如何改善JIA患儿长期以来在获得医疗服务方面存在的差距和治疗延误,以提高医疗效果。提高对阻碍JIA治疗的障碍的认识,是减少JIA患儿目前所经历的医疗不平等的第一步。现在就必须采取行动,对儿科风湿病跨学科工作人员进行培训,并为他们提供良好的装备。我们建议,将数字医疗嵌入临床实践,在儿童、全科医生和儿科风湿病团队之间建立综合护理模式,是提高护理质量的一种资源节约型方法。在整个医疗保健系统中,改善分散的服务提供和跨学科护理的协调。
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来源期刊
CiteScore
11.20
自引率
0.00%
发文量
41
期刊介绍: This journal aims to review the most important, recently published research in the field of rheumatology. By providing clear, insightful, balanced contributions by international experts, the journal intends to serve all those involved in the care and prevention of rheumatologic conditions. We accomplish this aim by appointing international authorities to serve as Section Editors in key subject areas such as the many forms of arthritis, osteoporosis and metabolic bone disease, and systemic lupus erythematosus. Section Editors, in turn, select topics for which leading experts contribute comprehensive review articles that emphasize new developments and recently published papers of major importance, highlighted by annotated reference lists. An international Editorial Board reviews the annual table of contents, suggests articles of special interest to their country/region, and ensures that topics are current and include emerging research. Commentaries from well-known figures in the field are also occasionally provided.
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