目的:除了预防器官损伤,系统性红斑狼疮(SLE)的治疗目标包括优化健康相关生活质量(HRQoL).每当无法实现缓解时,狼疮低疾病活动状态(LLDAS)作为目标越来越受到关注。SLE疾病如何活动,器官损伤,LLDAS与患者报告结果(PRO)相关的成就没有得到充分探索,构成了这次调查的范围.
方法:我们纳入了来自三级转诊中心的327例SLE患者。使用SLEDAI-2K和医师全球评估(PhGA)对疾病活动进行纵向登记,使用SLICC/ACR损伤指数(SDI)的器官损伤,药物疗法,EQ-5D-3L数据,以及疲劳的视觉模拟量表(VAS)评分,疼痛,并分析了中位随访时间8.5年内与SLE相关的总体健康状况.
结果:在总体人口中,以及近期发作的SLE患者和临床活跃的患者亚组,自身抗体阳性疾病,LLDAS成就,较低的PhGA,通过EQ-5D-3L和VAS评估,较低的临床SLEDAI-2K评分与良好的HRQoL相关,虽然SDI分数的增加与总体人群中的低PRO相关,但与疲劳无关。通过持续加入LLDAS,PROs得到了进一步加强。在整个研究人群的完全调整模型中,达到LLDAS和较低的疾病活动与有利的PRO相关,不管SDI。
结论:在迄今为止最长的观察性研究之一中,我们证明,LLDAS中的低疾病活动性和持续性伴随着良好的HRQoL,疼痛,疲劳,和整体健康经验,不管器官损伤。
OBJECTIVE: Beyond prevention of organ damage, treatment goals in systemic lupus erythematosus (SLE) include optimisation of health-related quality of life (HRQoL). The Lupus Low Disease Activity State (LLDAS) has received increasing attention as a goal whenever remission cannot be achieved. How SLE disease activity, organ damage, and LLDAS attainment relate to patient-reported outcomes (PROs) is not fully explored, which formed the scope of this investigation.
METHODS: We included 327 patients with SLE from a tertiary referral centre. Longitudinal registrations of disease activity using SLEDAI-2K and physician global assessment (PhGA), organ damage using the SLICC/ACR damage index (SDI), pharmacotherapies, EQ-5D-3L data, as well as visual analogue scale (VAS) scores for fatigue, pain, and overall SLE-related health state over a median follow-up time of 8.5 years were analysed.
RESULTS: In the overall population, as well as subgroups of patients with recent-onset SLE and those with clinically active, autoantibody-positive disease, LLDAS attainment, lower PhGA, and lower clinical SLEDAI-2K scores were associated with favourable HRQoL by EQ-5D-3L and VAS assessments, while increasing SDI scores were associated with poor PROs yet not fatigue in the overall population. PROs were further enhanced by being in LLDAS sustainedly. In fully adjusted models of the entire study population, LLDAS attainment and lower disease activity were associated with favourable PROs, irrespective of SDI.
CONCLUSIONS: In one of the longest to date observational studies, we demonstrated that low disease activity and being sustainedly in LLDAS were coupled with favourable HRQoL, pain, fatigue, and overall health experience, irrespective of organ damage.