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.作者贡献:田新平、李梦涛负责文献查阅、资料收集及论文撰写;曾小峰负责组织选题及论文审校。利益冲突:所有作者均声明不存在利益冲突
-
[1] Jolly M. How does quality of life of patients with systemic lupus erythematosus compare with that of other common chronic illnesses?[J]. J Rheumatol, 2005, 32: 1706-1708. [2] Zhu TY, Tam LS, Lee VW, et al. The impact of flare on disease costs of patients with systemic lupus erythematosus[J]. Arthritis Rheum, 2009, 61: 1159-1167. doi: 10.1002/art.24725 [3] Zhang SQ, Han JW, Sun LD, et al. A single-nucleotide polymorphism of the TNFSF4 gene is associated with systemic lupus erythematosus in Chinese Han population[J]. Rheumatol Int, 2011, 31: 227-231. doi: 10.1007/s00296-009-1247-2 [4] Zhang Y, Yang J, Zhang J, et al. Genome-wide search followed by replication reveals genetic interaction of CD80 and ALOX5AP associated with systemic lupus erythematosus in Asian populations[J]. Ann Rheum Dis, 2016, 75: 891-898. [5] Cheng YJ, Li MT, Zhao JL, et al. Chinese SLE Treatment and Research Group (CSTAR) registry: Ⅷ. Influence of socioeconomic and geographical variables on disease phenotype and activity in Chinese patients with SLE[J]. Int J Rheum Dis, 2018, 21: 716-724. doi: 10.1111/1756-185X.13057 [6] Li M, Zhang W, Leng X, et al. Chinese SLE Treatment and Research group (CSTAR) registry: Ⅰ. Major clinical characteristics of Chinese patients with systemic lupus erythematosus[J]. Lupus, 2013, 22: 1192-1199. doi: 10.1177/0961203313499086 [7] Zhang S, Su J, Li X, et al. Chinese SLE Treatment and Research group (CSTAR) registry: V. gender impact on Chinese patients with systemic lupus erythematosus[J]. Lupus, 2015, 24: 1267-1275. doi: 10.1177/0961203315585813 [8] Mok CC. Epidemiology and survival of systemic lupus erythematosus in Hong Kong Chinese[J]. Lupus, 2011, 20: 767-771. doi: 10.1177/0961203310388447 [9] Guillotin V, Bouhet A, Barnetche T, et al. Hydroxychloroquine for the prevention of fetal growth restriction and prematurity in lupus pregnancy: A systematic review and meta-analysis[J]. Joint Bone Spine, 2018, 85: 663-668. doi: 10.1016/j.jbspin.2018.03.006 [10] Liu JT, Zhao Y, Song YJ, et al. Pregnancy in women with systemic lupus erythematosus: a retrospective study of 111 pregnancies in Chinese women[J]. J Matern Fetal Neonatal Med, 2012, 25: 261-266. doi: 10.3109/14767058.2011.572310 [11] 霍春燕, 王丽. 系统性红斑狼疮患者服药相关知识和行为认知的调查[J]. 中华现代护理杂志, 2013, 19: 1023-1027. Huo CY, Wang L. Investigation of medication knowledge and behavior of systemic lupus erythematosus patients[J]. Zhonghua Xiandai Huli Zazhi, 2013, 19: 1023-1027. [12] 王军霞, 沙悦, 陈嘉林. 北京市东城区全科医生对系统性红斑狼疮疾病认知的在线问卷调查[J]. 中华全科医学, 2019, 18: 832-836. Wang JX, ShaY, Chen JL. Online questionnaire survey on know-ledge of systemic lupus erythematosus among general practitioners in Beijing Dongcheng district[J]. Zhonghua Quanke Yixue, 2019, 18: 832-836.
点击查看大图
计量
- 文章访问数: 1314
- HTML全文浏览量: 159
- PDF下载量: 340
- 被引次数: 0