Department of Clinical Immunology & Rheumatology, Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow, Uttar Pradesh, India.
Department of Pediatrics, Medical School, São Paulo State University (UNESP), Botucatu, Sao Paulo, Brazil.
Curr Allergy Asthma Rep. 2024 Oct;24(10):559-569. doi: 10.1007/s11882-024-01169-3. Epub 2024 Aug 15.
Childhood-onset systemic lupus erythematosus (cSLE) is a severe and potentially life-threatening chronic autoimmune disease. cSLE is more aggressive and has poorer outcomes than adult-onset disease. The global burden of cSLE is poorly understood, with most publications on cSLE originating from high-resourced settings. The reports from less resourced settings indicate high morbidity and mortality in these populations.
In this article, we review the disparities in global access to rheumatology care and research for patients with cSLE. We highlight recent cSLE advances from all regions of the globe. We describe current obstacles to cSLE clinical care and research in all settings. Finally, we propose a path forward for high quality, equitable and accessible care to individuals with cSLE everywhere. Individuals with cSLE are at risk for morbidity and death, yet patients worldwide face challenges to adequate access to care and research. Sustained, collaborative efforts are needed to create pathways to improve care and outcomes for these patients.
综述目的：儿童起病系统性红斑狼疮（cSLE）是一种严重且可能危及生命的慢性自身免疫性疾病。与成人起病疾病相比，cSLE 更具侵袭性且预后更差。全球范围内 cSLE 的负担了解甚少，大多数 cSLE 相关出版物都来自资源丰富的环境。资源较少的环境中的报告表明，这些人群的发病率和死亡率很高。
最近的发现：在本文中，我们回顾了全球范围内接受风湿病治疗和研究的 cSLE 患者之间存在的差异。我们强调了来自全球各个地区的最近的 cSLE 进展。我们描述了所有环境中 cSLE 临床护理和研究的当前障碍。最后，我们为世界各地的 cSLE 患者提出了一条高质量、公平和可及的护理的前进道路。cSLE 患者有发病和死亡的风险，但全世界的患者都面临着获得足够护理和研究的挑战。需要持续的、协作的努力来为这些患者创造改善护理和结果的途径。
