儿童系统性红斑狼疮缓解期的临床监测

Monitoring children with systemic lupus erythematosus in clinical practice

随着系统性红斑狼疮（systemic lupus erythematosus，SLE）发病机制研究的不断深入，治疗方案的不断改进，该病的预后已显著改善，长期生存率明显提高。在漫长的缓解期治疗中，儿科医师规范进行临床监测评估及指导合理用药对改善疾病预后、提高患儿生活质量非常重要。现参考欧洲抗风湿病联盟（EULAR）提出的对 SLE 患者进行监测的方法及中华医学会儿科学分会免疫学组制定的“儿童系统性红斑狼疮诊疗建议”，结合临床经验作如下推荐。

Systemic lupus erythematosus（SLE）is a multisystem autoimmune rheumatic disease characterized by flares and remissions. SLE has protean and often complex manifestations,necessitating careful clinical assessment. Not all clinical problems reported by a lupus child are due to the disease. Some may be a consequence of therapy and others may be unrelated to lupus. Therefore it is important to understand the totality of the effect of the disease on the patient. In order to do this measures are needed which distinguish current,potentially reversible disease activity,perma-nent organ damage and the effect of the disease on the children＆#39;s health status. This paper discuss the current measures available to assess disease activity and damage in SLE.