Recently, the China Systemic Lupus Erythematosus Development Report 2020 (hereinafter referred to as the Report) was published. Jointly initiated and written by the National Clinical Research Center for Skin and Immune Diseases (NCRC-DID) and the National Rheumatology Data Center (CRDC), the newspaper for the first time introduced the current situation, clinical characteristics, development status, existing problems and challenges, and future prospects of SLE in China in the past ten years. Zeng Xiaofeng, director of the National Clinical Research Center for Skin and Immune Diseases and director of the Department of Rheumatology and Immunology of Peking Union Medical College Hospital, said: "This is the world's first report on SLE, which is of great significance for promoting the development of global SLE diagnosis and treatment. ”
▲China Systemic Lupus Erythematosus Development Report 2020
It is important to find out the SLE family background in China
SLE is a systemic autoimmune disease with unknown cause, related to genetic, hormonal, environmental and other factors, with the presence of multiple autoantibodies and multi-organ involvement in the patient's blood as the prominent clinical feature. With the more comprehensive understanding of SLE, people have gradually discovered and realized that in addition to severe kidney damage, SLE also has clinical manifestations such as skin and blood system involvement, as well as bone joint and muscle damage. Case data included in the National Rheumatology Data Center (CRDC) show that among the clinical manifestations of organ involvement in patients with SLE, the top four are mucocutaneous damage, arthritis, hematologic damage and lupus nephritis, with the proportion of patients being 58.8%, 55%, 42.3% and 33.7% respectively, which also strongly proves that SLE is a systemic disease that can cause multi-organ involvement in patients.
The prevalence of SLE in China is about 30 to 70/100,000, according to this estimate, there are 1 million SLE patients in China, the total number ranks first in the world, and the incidence rate ranks second. The incidence targets are mainly women of childbearing age, with a male-female ratio of 1:11.9, an average age of onset of 30.7 years, an average age of 31.6 years at the time of diagnosis, and an average delay of 10.8 months. In addition, the fatality rate and disability rate of SLE in China are relatively high, which causes a certain economic and psychological burden to patients and their families, and brings a negative impact on the national economy. "It is important to find out the family background of SLE in China", Director Zeng said, although the 5-10-year survival rate of patients has improved significantly from 40-50% in the 1960s, but the long-term survival rate after 25-30 years has dropped off a cliff, only 30%.
"We have now achieved our goal of a 10-year survival rate for SLE patients comparable to that of developed countries." Director Zeng Xiaofeng said that with the prolongation of the course of the disease, almost all patients with SLE will have different degrees of organ involvement, accompanied by irreversible damage to the gradual accumulation of organ involvement, which will eventually cause multi-organ failure and lead to patient death. ”
Let patients live happily for 60 more years
The report pointed out that 94.16% of patients with SLE in China expect to reduce the recurrence rate of the disease through treatment, and 89.51% of patients expect to reduce the use of glucocorticoids (hereinafter referred to as "hormones"). Data from the Chinese Systemic Lupus Erythematosus Research Collaboration Group (CSTAR) show that 84.13% of SLE patients in China are using hormone therapy, some of which are used for maintenance therapy with a large dose of hormones, adverse reactions also increase with the dose increase, only 0.76% of SLE patients in China can achieve complete remission without drug treatment. "The higher the disease activity, the higher the risk of organ damage and death. Therefore, how to reduce disease recurrence and complications, reduce the accumulation of organ involvement, use the minimum hormone dose to maintain disease stability, and even stop the hormone, improve the long-term prognosis of patients is the focus of standard treatment, and it is also a challenge in the current diagnosis and treatment of SLE in China. Director Zeng Xiaofeng added.
Tian Xinping, chief physician of the Department of Rheumatology and Immunology of Peking Union Medical College Hospital, said, "At present, some patients have some misunderstandings, one is to avoid medical treatment, and the other is to rush to achieve such a disease that cannot be cured at present, and even find a home remedy, but it delays diagnosis and treatment." "The report covers the support of international clinical data, the results of clinical studies in China, and the efficacy of proprietary Chinese medicines on SLE, which is a localization scheme more suitable for Chinese." It is hoped that through this report, patients will build confidence in doctors and their diagnosis and treatment plans, and better cooperate with doctors. ”
Hormones are still the basic drugs for the current treatment of SLE, but in clinical work, doctors are often faced with the problem of "how to help patients reduce or even not use hormones". According to Li Mengtao, director of the Office of the National Clinical Research Center for Skin and Immune Diseases and deputy director of the Department of Rheumatology and Immunology of Peking Union Medical College Hospital, stratified treatment is an effective method, using different hormone doses according to the patient's condition, and can also be controlled by the doctor to gradually reduce the hormone medication to the minimum, or even stop using it. "At present, the basic, clinical and translational research of rheumatic immune diseases at home and abroad has achieved fruitful results, and the advent of targeted drugs such as biologics has brought possibilities to SLE patients to reduce hormone dosage and achieve organ protection, and 'let patients live happily for 60 years' is the goal of our unremitting efforts."
Forty years of perseverance
In the 20th century, the diagnosis and treatment of SLE in China faced prominent problems such as lack of medical treatment, lack of medical resources, and lack of diagnosis and treatment norms in line with China's national conditions, and the establishment of a localized and systematic SLE diagnosis and treatment program and research platform has become a top priority.
Since the establishment of the Department of Rheumatology and Immunology of Peking Union Medical College Hospital in 1980, SLE research has always been one of the most important tasks. In 1983, the diagnostic criteria for SLE patients were established, and compared with the standards of the American Rheumatological Association, the addition of anti-Sm antibodies, complement reduction, kidney biopsy and other items were later included in the internationally accepted SLE standards and have been used to this day. In 2010, with the support of the national "Eleventh Five-Year Plan" science and technology support project "Systematic Lupus Erythematosus Clinical Diagnosis and Comprehensive Treatment Research", he led nearly 800 rheumatism diagnosis and treatment centers across the country, and initially formed a research network with the Systematic Lupus Diagnosis and Treatment Collaborative Group (CSTAR) and the National Rheumatism Data Center (CRDC) as the core. In 2017, the national federation of medical associations was established: the China Federation of Rheumatology and Immunology Medical Associations (CRCA), which is currently the world's largest rheumatic immune disease data platform. The hospital also created the Chinese Rheumatology Information Database, Biological Sample Bank (CRIP), Standardized Training and Multidisciplinary Communication Platform (CREP), and launched a multi-center collaborative research in the Chinese rheumatological immunology community. In 2019, the hospital was officially approved to establish the National Clinical Research Center for Skin and Immune Diseases (NCRC-DID). In addition, a number of standardized diagnosis and treatment guidelines for the Chinese rheumatic immunology community have been issued, and a series of fruitful clinical research results have been achieved.
The report is based on the data of nearly 50,000 cases of SLE patients in the National Rheumatology Data Center, and on the basis of repeated data review, verification and revision, multi-party research and solicitation of opinions by more than 70 top experts in the field of SLE research in China, it took more than two years to compile and compile, ensuring the authenticity and scientific rationality of the data.
Director Zeng Xiaofeng expressed the hope that the report can improve the awareness of Chinese SLE patients and the public about the nature and treatment of the disease, improve patient treatment compliance, improve the short-term and long-term prognosis of patients, deepen the medical workers' comprehensive understanding of the current situation of SLE and treatment research, and provide a grounded, Chinese characteristics and evidence-based medical evidence for relevant government departments to formulate policies.
Finishing / Liu Yihan
Audit/Zhao Jiuliang
Photo: Department of Rheumatology and Immunology, Peking Union Medical College Hospital
Editor/Liu Yihan Chen
Editor-in-Chief/Chen Mingyan
Producer/Wu Peixin