Rheumatology Division, Faculdade de Medicina FMUSP, Universidade de Sao Paulo, Sao Paulo, SP, Brazil.
Hospital Sao Paulo, 28105Universidade Federal de Sao Paulo, Sao Paulo, SP, Brazil.
Lupus. 2022 Jul;31(8):944-952. doi: 10.1177/09612033221097798. Epub 2022 Apr 25.
To describe the frequency and investigate potential associations of unemployment, need of financial assistance and health-related quality of life in adult patients with childhood-onset Systemic Lupus Erythematosus (cSLE).
In this multicenter cross-sectional retrospective cohort study including cSLE adult patients, questionnaires were applied evaluating demographic characteristics, medical history, treatment, receipt of government financial assistance, work status, quality of life, economic classification, disease activity, and damage accrual. Disease activity and disease damage were measured at the study visit.
Sixty-nine cSLE patients with a median age of 21 years from two Brazilian tertiary centers were included (median disease duration 9 years). Twenty-eight (40.6%) patients were unemployed and 16 (23.2%) were receiving financial assistance or retirement pension. Work unemployment was associated with higher damage scores (OR 1.83, 95% CI 1.08 to 3.09, = 0.024), and the need of financial assistance was associated with longer disease duration (OR 1.15, 95% CI 1.00 to 1.31, = 0.045) and worse economic score (OR 0.87, 95% CI 0.77 to 0.99, = 0.038). Emotional health and body image perception were the most compromised domains of quality of life but showed no association with disease parameters. Disease activity, on the other hand, was inversely associated with symptoms scores (β = -1.377, = 0.014) and scores of adverse effects of medications (β = -1.286, = 0.020).
cSLE is a disease with severe outcomes and high social burden that profoundly impacts patients. Damage accrual is a major contributor to unemployment during adulthood and its prevention must be central in the management of cSLE.
描述成年起病系统性红斑狼疮（cSLE）患者的失业、经济援助需求与健康相关生活质量之间的关联。
本研究为多中心回顾性队列研究，纳入了成年 cSLE 患者，应用问卷评估了人口统计学特征、病史、治疗、政府经济援助的获得、工作状态、生活质量、经济分类、疾病活动度和损伤累积情况。在研究就诊时评估疾病活动度和损伤情况。
本研究共纳入了来自巴西两个三级中心的 69 名中位年龄为 21 岁的 cSLE 患者（中位病程 9 年）。28 名（40.6%）患者失业，16 名（23.2%）正在接受经济援助或领取退休金。工作失业与更高的损伤评分相关（OR 1.83，95%CI 1.08 至 3.09， = 0.024），而对经济援助的需求与更长的病程（OR 1.15，95%CI 1.00 至 1.31， = 0.045）和更差的经济评分（OR 0.87，95%CI 0.77 至 0.99， = 0.038）相关。情感健康和身体意象感知是生活质量受损最严重的领域，但与疾病参数无关。另一方面，疾病活动度与症状评分（β = -1.377， = 0.014）和药物不良反应评分（β = -1.286， = 0.020）呈负相关。
cSLE 是一种具有严重结局和高社会负担的疾病，严重影响患者。成年期的失业主要与损伤累积有关，因此预防损伤应成为 cSLE 管理的重点。
