1st Department of Internal Medicine, Faculty of Medicine, Pavol Jozef Safarik University, Trieda SNP 1, 040 11 Kosice, Slovakia.
Department of Health Psychology and Methodology Research, Medical Faculty, Pavol Jozef Safarik University, Trieda SNP 1, 040 11 Kosice, Slovakia.
Int J Environ Res Public Health. 2020 Feb 18;17(4):1315. doi: 10.3390/ijerph17041315.
The aim is to describe a profile of systemic lupus erythematosus (SLE) patient (socio-demographic data, course of disease, health status, and health care utilization, SLE impact on their life, SLE awareness) and to explore the association of patient's perspective with clinical indicators. Adult patients diagnosed by SLE were recruited in outpatient clinics ( = 76, 88% female, data collected in 2012-2016, Slovakia). The association of patients' perspective (SLE status, health complaints during remission, SLE impact, hospitalizations) with clinical activity (European Consensus Lupus Activity Measurement Index - ECLAM) and inflammatory marker (erythrocyte sedimentation rate - ESR) was assessed by -test for independent variables and one-way ANOVA. Almost 17.9% of patients reported relapse. During remission, they mostly suffered fatigue and pain. Nearly all patients were on chronic pharmacological treatment. Most of the patients assessed SLE impact on their life as restrictive (56.9%) or very restrictive (23.1%). The most frequent source of information was their physician, and 67.2% reported that they have sufficient information about the disease and its treatment. Only the association of SLE status and hospitalization with clinical activity (ECLAM) and inflammatory marker (ESR) were confirmed. With recent improvements in diagnostics and therapy options, the prognosis for patients with SLE has improved. Nevertheless, the impact of this disease on all areas of a patient's life is extensive.
目的是描述系统性红斑狼疮（SLE）患者的特征（社会人口统计学数据、疾病过程、健康状况和医疗保健利用情况、SLE 对其生活的影响、SLE 意识），并探讨患者观点与临床指标的相关性。在门诊诊所招募了成年 SLE 患者（=76，88%为女性，数据收集于 2012-2016 年，斯洛伐克）。通过独立变量的 t 检验和单向方差分析评估了患者观点（SLE 状态、缓解期的健康问题、SLE 对其生活的影响、住院治疗）与临床活动（欧洲共识狼疮活动测量指数 - ECLAM）和炎症标志物（红细胞沉降率 - ESR）之间的相关性。近 17.9%的患者报告复发。在缓解期，他们大多患有疲劳和疼痛。几乎所有的患者都接受慢性药物治疗。大多数患者认为 SLE 对其生活的影响是受限的（56.9%）或非常受限的（23.1%）。最常见的信息来源是他们的医生，67.2%的患者报告他们有足够的关于疾病及其治疗的信息。仅证实了 SLE 状态和住院治疗与临床活动（ECLAM）和炎症标志物（ESR）之间的相关性。随着诊断和治疗选择的最新进展，SLE 患者的预后有所改善。然而，这种疾病对患者生活各个方面的影响是广泛的。
