原发性干燥综合征(pSS)是一种慢性炎症,表现出干燥的症状,疼痛,疲劳和经常焦虑和抑郁的症状。pSS中与健康相关的生活质量(HRQoL)显着降低,并且pSS的直接和间接健康成本可观。这项研究旨在确定症状负担,在pSS中,在24个月的中位随访期内,疾病活动和人口统计学与HRQoL纵向相关。
使用生存分析策略评估了来自纽卡斯尔pSS队列(n=377)的纵向EuroQoL-5维度(EQ-5D)-3L数据。Kaplan-Meier和Cox比例风险分析使用基线纽卡斯尔干燥分层工具(NSST)亚组,EULAR干燥综合征患者报告指数(ESSPRI),EULAR干燥综合征疾病活动指数(ESSDAI),疾病持续时间,年龄和性别作为协变量,包括多重用药和合并症评分,有数据的地方(n=191)。
在这项研究中分析的377名pSS参与者中,16%的人的HRQoL下降到与死亡相当或更差的健康状况。NSST亚组和ESSPRI评分与到达“EQ-5D事件”的时间有显著关系,而基线ESSDAI,年龄,疾病持续时间和性别没有。
在pSS中,症状负担和很大程度上的NSST亚组,而不是系统性疾病活动,纵向与HRQoL有显著关系。症状负担的改善有可能对pSS的长期HRQoL产生重大影响。
Primary Sjögren\'s syndrome (pSS) is a chronic inflammatory condition, which presents with symptoms of dryness, pain, fatigue and often symptoms of anxiety and depression. Health-related quality of life (HRQoL) is significantly reduced in pSS and the direct and indirect health costs of pSS are substantial. This study aims to determine how symptom burden, disease activity and demographics associate with HRQoL longitudinally over a median of 24-month follow-up period in pSS.
Longitudinal EuroQoL-5 dimension (EQ-5D)-3L data from the Newcastle pSS cohort (n = 377) were evaluated using a survival analysis strategy. Kaplan-Meier and Cox proportional hazards analysis were performed using baseline Newcastle Sjogren\'s Stratification Tool (NSST) subgroup, EULAR Sjogren\'s Syndrome Patient Reported Index (ESSPRI), EULAR Sjogren\'s Syndrome Disease Activity Index (ESSDAI), disease duration, age and sex as covariates including polypharmacy and comorbidity score, where data were available (n = 191).
Of the 377 pSS participants analysed in this study, 16% experienced a decline in HRQoL to a health state comparable to or worse than death. NSST subgroup and ESSPRI score had a significant relationship with time to \'EQ-5D event\', whereas baseline ESSDAI, age, disease duration and sex did not.
In pSS, symptom burden and to a great extent NSST subgroup, rather than systemic disease activity, has a significant relationship with HRQoL longitudinally. Improvements in symptom burden have the potential to produce significant impacts on long-term HRQoL in pSS.