Swaak A J, van den Brink H G, Smeenk R J, Manger K, Kalden J R, Tosi S, Marchesoni A, Domljan Z, Rozman B, Logar D, Pokorny G, Kovacs L, Kovacs A, Vlachoyiannopoulos P G, Moutsopoulos H M, Chwalinska-Sadowska H, Dratwianka B, Kiss E, Cikes N, Branimir A, Schneider M, Fischer R, Bombardieri S, Mosca M, Smolen J S
Department of Rheumatology, Zuiderzeikenhuis, Groene Hilledijk, Rotterdam, The Netherlands.
Rheumatology (Oxford). 1999 Oct;38(10):953-8. doi: 10.1093/rheumatology/38.10.953.
Most information available about the disease course of patients with systemic lupus erythematosus (SLE) is restricted to the first 5 yr after disease onset. Data about the disease course 10 yr after disease onset are rare. The aim of this multicentre study was to describe the outcome of SLE patients with a disease duration of >10 yr.
Outcome parameters were the SLE Disease Activity Index (SLEDAI), the European Consensus Lupus Activity Measure (ECLAM), the Systemic Lupus International Collaborative Clinics/American College of Rheumatology Damage Index (SLICC/ACR), a global damage index (DI) and required treatment. In 10 different European rheumatology centres, all SLE patients who were evaluated in the last 3 months of 1994, and who had been diagnosed with SLE at least 10 yr ago, were included in the study.
It should be stressed that our results are confined to a patient cohort, defined by a disease duration of at least 10 yr, and who are still under clinical care at the different centres in Europe. These SLE patients still showed some disease activity, related to symptoms of the skin and musculoskeletal systems, next to the presence of renal involvement. A total of 72% of the patients needed treatment with prednisolone (</=7.5 mg). The cumulative damage was overall related to clinical features of the central nervous system (14%) and renal involvement (14%), next to deforming arthritis (14%), osteoporosis (15%) and hypertension (40%). The prevalences of obesity, Cushing appearance and diabetes are highly suggestive that the ongoing treatment and that in the past might have had an impact on the total sum of end-organ damage.
After 10 yr, a high proportion of patients in our cohort continued to show evidence of active disease, defined by the SLEDAI as well as ECLAM. The DI was related to the involvement of the central nervous system, renal involvement and the presence of hypertension.
关于系统性红斑狼疮（SLE）患者病程的大多数现有信息仅限于疾病发作后的前5年。关于疾病发作10年后病程的数据很少。这项多中心研究的目的是描述病程超过10年的SLE患者的结局。
结局参数包括SLE疾病活动指数（SLEDAI）、欧洲狼疮活动共识指标（ECLAM）、系统性红斑狼疮国际协作临床中心/美国风湿病学会损伤指数（SLICC/ACR）、全球损伤指数（DI）以及所需治疗。在10个不同的欧洲风湿病中心，纳入了所有在1994年最后3个月接受评估且至少在10年前被诊断为SLE的患者。
应该强调的是，我们的结果仅限于一个患者队列，该队列由病程至少10年且仍在欧洲不同中心接受临床护理的患者组成。这些SLE患者除了存在肾脏受累外，仍表现出一些与皮肤和肌肉骨骼系统症状相关的疾病活动。共有72%的患者需要使用泼尼松龙（≤7.5 mg）进行治疗。累积损伤总体上与中枢神经系统的临床特征（14%）、肾脏受累（14%）、变形性关节炎（14%）、骨质疏松症（15%）和高血压（40%）有关。肥胖、库欣面容和糖尿病的患病率强烈提示，正在进行的治疗以及过去的治疗可能对终末器官损伤的总和产生了影响。
10年后，我们队列中的很大一部分患者继续表现出疾病活动的证据，根据SLEDAI和ECLAM定义。DI与中枢神经系统受累、肾脏受累和高血压的存在有关。
