从我国系统性红斑狼疮的诊治现状寻找可能的解决方案——来自《中国系统性红斑狼疮发展报告2020》的启示

Finding Possible Solutions for the Management of Systemic Lupus Erythematosus from the Current Situation and Challenges in China

  • 摘要: 系统性红斑狼疮(systemic lupus erythematosus,SLE)已逐渐成为我国常见的慢性自身免疫性疾病。据估计,目前我国SLE患者约100万人,具有患者人数多、病情重、并发症发生率高、社会与经济负担重以及对生育影响大的特点。由于我国风湿免疫病学科建设起步晚,全国发展极不均衡,风湿免疫病专业从业人员在数量和质量上均不能满足SLE患者的需求,导致我国SLE诊治的规范化程度不足,患者的临床缓解率和长期存活率均低于世界发达国家。此外,由于SLE患者缺乏对疾病的正确认知,目前我国尚缺乏完善的慢病管理体系,造成SLE患者治疗依从性低、治疗效果差的现状。因此,通过覆盖全国的SLE诊治协作网,充分发挥国家皮肤与免疫疾病临床医学研究中心的引领作用,促进风湿免疫病专科发展,建立完善的慢病管理体系,充分利用国家发展风湿免疫科的相关政策,促进临床与基础研究成果的快速转化以及开展高质量的临床研究是可能的解决方案。

     

    Abstract: Systemic lupus erythematosus(SLE) has become a common chronic autoimmune disease in China. It is estimated that there are about 1 million SLE patients in China. SLE in China has the characteristics of a large patient volume, high complication rate, heavy social and economic burden, and a great adverse impact on fertility. However, since rheumatology is the youngest subspecialty of internal medicine in China, and the distribution of rheumatologists is very uneven across the country, neither the quantity nor the quality of rheumatologists could meet the needs of SLE patients in China. This leads to the inadeguate standardization of the management, and the rates of remission and long-term survival of SLE patients in China lower than in the advanced nations. On the other hand, in China, SLE patients generally lack the knowledge of the disease, and the current system of managing chronic diseasesis far from perfect. All these have led to poor compliance with treatments and a low response rate. Therefore, the solutions for these difficulties and challenges might be setting up a nation-wide network for research and management of SLE, bringing the leadership of the National Clinical Research Center for Dermatological and immunological Diseases of China into full play, facilitating the development of rheumatology in China, building up a well-organized system for the management of chronic diseases, fully utilizing the policy for specialty development of government administrations, speeding up translational research and conducting high quality clinical studies.

     

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