Jolly M, Toloza S, Goker B, Clarke A E, Navarra S V, Wallace D, Weisman M, Mok C C
1 Department of Medicine, Rush University Medical Center, Rush University, Chicago, IL, USA.
2 Ministry of Health, San Fernando del Valle de Catamarca, Argentina.
Lupus. 2018 Feb;27(2):257-264. doi: 10.1177/0961203317717082. Epub 2017 Jul 20.
Background Patient-reported outcomes in lupus nephritis (LN) are not well studied. Studies with disease-targeted PRO tool in LN do not exist. Herein, we describe quality of life (QOL: HRQOL & non-HRQOL) among LN patients using LupusPRO. Methods International, cross-sectional data from 1259 patients with systemic lupus erythematosus (SLE) and LupusPRO were compared, stratified by (a) presence of LN (ACR classification criteria (ACR-LN)) at any time and, (b) active LN (on SLEDAI) at study visit. Damage was assessed by SLICC/ACR-SDI. Multivariate regression analyses for QOL against ACR-LN (active LN) after adjusting for age, gender, ethnicity and country of recruitment were performed. Results Mean (SD) age was 41.7 (13.5) yrs, 93% were women. Five hundred and thirty-nine of 1259 SLE patients had ACR-LN. ACR-LN group was younger, were more often on immunosuppressive medications, had worse QOL on lupus medications and procreation than non-ACR-LN patients. HRQOL and non-HRQOL scores were similar in both groups. One hundred and twenty-nine of 539 ACR-LN patients had active LN. Active LN group was younger, had greater disease activity and had worse HRQOL and non-HRQOL compared to patients without active LN. Specific domains adversely affected were lupus symptoms, lupus medications, procreation, emotional health, body image and desires-goals domains. Patients with ACR-LN and active LN fared significantly worse in lupus medications and procreation HRQOL domains, even after adjusting for age, ethnicity, gender and country of recruitment. Conclusions Lupus nephritis patients have poor QOL. Patients with active LN have worse HRQOL and non-HRQOL. Most domains affected are not included in the generic QOL tools used in SLE. LN patients must receive discussion on lupus medications and procreation issues. Patients with active LN need comprehensive assessments and addressal of QOL, along with treatment for active LN.
狼疮性肾炎(LN)患者报告的结局尚未得到充分研究。目前尚无针对LN使用疾病特异性患者报告结局(PRO)工具的研究。在此,我们使用LupusPRO描述LN患者的生活质量(QOL:健康相关生活质量和非健康相关生活质量)。方法:比较了来自1259例系统性红斑狼疮(SLE)患者的国际横断面数据和LupusPRO数据,根据以下因素进行分层:(a)任何时候存在LN(美国风湿病学会(ACR)分类标准(ACR-LN)),以及(b)研究访视时的活动性LN(根据SLE疾病活动指数(SLEDAI))。通过系统性红斑狼疮国际协作临床/美国风湿病学会损伤指数(SLICC/ACR-SDI)评估损伤情况。在调整年龄、性别、种族和招募国家后,对QOL与ACR-LN(活动性LN)进行多变量回归分析。结果:平均(标准差)年龄为41.7(13.5)岁,93%为女性。1259例SLE患者中有539例患有ACR-LN。与非ACR-LN患者相比,ACR-LN组患者更年轻,更常使用免疫抑制药物,在狼疮药物治疗和生育方面的生活质量更差。两组的健康相关生活质量和非健康相关生活质量评分相似。539例ACR-LN患者中有129例患有活动性LN。与无活动性LN的患者相比,活动性LN组患者更年轻,疾病活动度更高,健康相关生活质量和非健康相关生活质量更差。受不利影响的特定领域包括狼疮症状、狼疮药物治疗、生育、情绪健康、身体形象和愿望-目标领域。即使在调整年龄、种族、性别和招募国家后,ACR-LN和活动性LN患者在狼疮药物治疗和生育健康相关生活质量领域的表现仍显著较差。结论:狼疮性肾炎患者的生活质量较差。活动性LN患者的健康相关生活质量和非健康相关生活质量更差。大多数受影响的领域未包括在SLE中使用的通用QOL工具中。LN患者必须接受关于狼疮药物治疗和生育问题的讨论。活动性LN患者需要全面评估和解决生活质量问题,同时接受活动性LN的治疗。