Felten Renaud, Sagez Flora, Gavand Pierre-Edouard, Martin Thierry, Korganow Anne-Sophie, Sordet Christelle, Javier Rose-Marie, Soulas-Sprauel Pauline, Rivière Marianne, Scher Florence, Poindron Vincent, Guffroy Aurélien, Arnaud Laurent
Service de rhumatologie, Hôpitaux Universitaires de Strasbourg, Université de Strasbourg, Strasbourg, France.
Centre National de Références des Maladies Systémiques et Autoimmunes Rares Est Sud-Ouest (RESO)-LUPUS, Strasbourg, France.
Lupus Sci Med. 2019 Jan 10;6(1):e000303. doi: 10.1136/lupus-2018-000303. eCollection 2019.
From a 1-year survival of less than 50% before the discovery of glucocorticoids to over 90% at 10 years in most dedicated centres, the spectrum of SLE has profoundly evolved. Despite this improvement, several major challenges currently remain. The aim of this review is to analyse what are, according to us, the 10 most important contemporary challenges in the management of SLE. Among those are the need to treat to target to favour disease remission (or low disease activity), limit the use of glucocorticoids, derive more comprehensive tools for the evaluation of disease activity, develop more effective drugs (yielding successful trials), dissect the heterogeneity of the disease both at the molecular and genetic levels, identify relevant biomarkers for individualised treatment, manage fertility and pregnancy, tackle comorbidities such as cardiovascular risk, the prevention of infections and osteoporosis, improve the network of care (from the patients' perspective), and favour a holistic approach (integrating fatigue, adherence to treatment, physical activity). Altogether, these 10 contemporary challenges in SLE may be considered as a roadmap for those involved in the daily care of patients with SLE, as well as for researchers who may wish to contribute to an improved management of this rare and complex disease.
从糖皮质激素发现之前1年生存率低于50%,到大多数专业中心10年生存率超过90%,系统性红斑狼疮(SLE)的情况已发生了深刻变化。尽管有这种改善,但目前仍存在几个重大挑战。本综述的目的是分析我们认为在SLE管理中10个最重要的当代挑战。其中包括需要进行靶向治疗以促进疾病缓解(或低疾病活动度)、限制糖皮质激素的使用、获得更全面的疾病活动度评估工具、开发更有效的药物(取得成功的试验结果)、在分子和基因水平剖析疾病的异质性、识别用于个体化治疗的相关生物标志物、管理生育和妊娠、应对合并症如心血管风险、预防感染和骨质疏松症、改善护理网络(从患者角度)以及支持整体方法(整合疲劳、治疗依从性、身体活动)。总之,SLE的这10个当代挑战可被视为参与SLE患者日常护理人员的路线图,以及可能希望为改善这种罕见且复杂疾病管理做出贡献的研究人员的路线图。