Department of Pediatrics and Child Health, Room 515, ICH building, Red Cross War Memorial Children's Hospital, University of Cape Town, Cape Town, Rondebosch, 7700, South Africa.
Department of Pediatrics, BC Children's Hospital, University of British Columbia, Vancouver, Canada.
Clin Rheumatol. 2019 Feb;38(2):563-575. doi: 10.1007/s10067-018-4304-y. Epub 2018 Sep 28.
Juvenile idiopathic arthritis (JIA) is the most prevalent chronic rheumatic disease in children and young people (CYP) and a major cause of pain and disability. The vast majority of the world's children and their families live in less resourced countries (LRCs) and face significant socioeconomic and healthcare challenges. Current recommendations for standards of care and treatment for children with JIA do not consider children living in less resourced countries. In order to develop appropriate recommendations for the care of CYP with JIA in less resourced countries a meeting of experienced pediatric rheumatologists from less resourced countries was convened with additional input from a steering group of international pediatric rheumatologists with experience in developing recommendations and standards of care for JIA. Following a needs assessment survey of healthcare workers caring for CYP with JIA in LRC, a literature review was carried out and management recommendations formulated using Delphi technique and a final consensus conference. Responses from the needs assessment were received from 121/483 (25%) practitioners from 25/49 (51%) less resourced countries. From these responses, the initial 84 recommendations were refined and expanded through a series of 3 online Delphi rounds. A final list of 90 recommendations was proposed for evaluation. Evidence for each statement was reviewed, graded, and presented to the consensus group. The degree of consensus, level of agreement, and level of evidence for these recommendations are reported. Recommendations arrived at by consensus for CYP with JIA in less resourced countries cover 5 themes: (1) diagnosis, (2) referral and monitoring, (3) education and training, (4) advocacy and networks, and (5) research. Thirty-five statements were drafted. All but one statement achieved 100% consensus. The body of published evidence was small and the quality of evidence available for critical appraisal was low. Our recommendations offer novel insights and present consensus-based strategies for the management of JIA in less resourced countries. The emphasis on communicable and endemic diseases influencing the diagnosis and treatment of JIA serves as a valuable addition to existing JIA guidelines. With increasing globalization, these recommendations as a whole provide educational and clinical utility for clinicians worldwide. The low evidence base for our recommendations reflects a shortage of research specific to less resourced countries and serves as an impetus for further inquiry towards optimizing care for children with JIA around the world.
幼年特发性关节炎（JIA）是儿童和青少年（CYP）中最常见的慢性风湿性疾病，也是疼痛和残疾的主要原因。世界上绝大多数儿童及其家庭生活在资源较少的国家（LRC），面临着重大的社会经济和医疗保健挑战。目前针对 JIA 儿童的护理标准和治疗建议并未考虑生活在资源较少国家的儿童。为了为资源较少国家的 JIA 儿童制定适当的护理建议，召集了来自资源较少国家的经验丰富的儿科风湿病专家开会，并由具有制定 JIA 护理建议和标准的国际儿科风湿病专家指导小组提供额外投入。在对资源较少国家照顾 JIA 儿童的医疗保健工作者进行医疗需求评估调查后，进行了文献回顾，并使用 Delphi 技术制定了管理建议，并举行了最终的共识会议。从资源较少的 49 个国家中的 25 个国家收到了 121/483（25%）位从业者对医疗需求评估的回应。根据这些回应，最初的 84 项建议经过一系列 3 次在线 Delphi 回合的完善和扩展。提出了一份 90 项建议清单供评估。审查了每个声明的证据，对其进行了分级，并提交给共识小组。报告了这些建议的共识程度、协议程度和证据水平。为资源较少国家的 JIA 儿童达成的共识建议涵盖 5 个主题：（1）诊断，（2）转诊和监测，（3）教育和培训，（4）宣传和网络，以及（5）研究。起草了 35 项声明。除了一项声明外，所有声明都达成了 100%的共识。发表的证据数量很少，可用于关键评估的证据质量也很低。我们的建议提供了新颖的见解，并提出了基于共识的策略，用于管理资源较少国家的 JIA。对影响 JIA 诊断和治疗的传染病和地方病的强调是对现有 JIA 指南的有益补充。随着全球化的不断发展，这些建议作为一个整体为全球临床医生提供了教育和临床实用性。我们建议的低证据基础反映了针对资源较少国家的具体研究的不足，这也促使我们进一步研究如何优化全球儿童的 JIA 护理。
