系统性红斑狼疮患者的临床表现、护理路径及获得专科护理的延迟：来自狼疮中西部网络（LUMEN）的一项研究

Clinical Presentation, Care Pathways, and Delays in Access to Specialized Care in Patients With Systemic Lupus Erythematosus: A Study From Lupus Midwest Network (LUMEN).

作者信息

Sanchez-Rodriguez Alain, Meade-Aguilar Jose Antonio, Yang Jeffrey X, Figueroa-Parra Gabriel, Hanson Andrew C, Langenfeld Hannah E, Thanarajasingam Uma, Chamberlain Alanna M, Greenlund Kurt J, Barbour Kamil E, Crowson Cynthia S, Duarte-García Alí

机构信息

Mayo Clinic, Rochester, Minnesota.

Centers for Disease Control and Prevention, Atlanta, Georgia.

出版信息

Arthritis Care Res (Hoboken). 2025 Apr;77(4):451-459. doi: 10.1002/acr.25445. Epub 2024 Nov 14.

DOI:10.1002/acr.25445

PMID:39400527

Abstract

OBJECTIVE

We aimed to characterize presentation and care pathways of patients with systemic lupus erythematosus (SLE), and delays in access to SLE-specialized care.

METHODS

We included patients with incident SLE from the Lupus Midwest Network registry. Time from the first medical encounter for SLE clinical manifestation to access to SLE-specialized care, physician diagnosis, and treatment was estimated. Delays were defined as ≥6 months to access specialized care. We compared SLE manifestations, disease activity, and Systemic Lupus International Collaborating Clinics/American College of Rheumatology damage indexes (SDI) between patients with and without delays. Logistic regression models assessed associations with delays.

RESULTS

The study included 373 patients with SLE. The median time to access SLE-specialized care was 1.1 (95% confidence interval [CI] 0.9-1.5) months, time to diagnosis was 30.6 (95% CI 18.9-48.1) months, and time to treatment initiation was 4.7 (95% CI 3.9-8.4) months. Approximately 25% of patients (93 out of 373) experienced delays accessing specialized care, which were associated with fewer SLE manifestations at first SLE-related encounter (fewer than two SLE domains; 92% vs 72%, P < 0.001). Patients with mucocutaneous or musculoskeletal manifestations were less likely to experience delays, whereas hematologic (odds ratio [OR] 1.71, 95% CI 1.03-2.84) or antiphospholipid antibodies domains (OR 6.05, 95% CI 2.46-14.88) were associated with delays. Delays were associated with damage at first access to SLE-specialized care (SDI ≥1; 30% vs 7%, P < 0.001).

CONCLUSION

Patients follow a heterogeneous pathway to receive care. One-fourth of patients experienced delays accessing SLE-specialized care, which was associated with disease-related damage. Fewer manifestations, hematologic manifestations, or antiphospholipid antibodies were associated with delays.

摘要

目的

我们旨在描述系统性红斑狼疮（SLE）患者的临床表现、护理途径以及获得SLE专科护理的延迟情况。

方法

我们纳入了来自狼疮中西部网络登记处的初发SLE患者。估计了从首次因SLE临床表现就诊到获得SLE专科护理、医生诊断和治疗的时间。延迟定义为获得专科护理的时间≥6个月。我们比较了有延迟和无延迟患者的SLE表现、疾病活动度以及系统性红斑狼疮国际协作诊所/美国风湿病学会损伤指数（SDI）。逻辑回归模型评估了与延迟的相关性。

结果

该研究纳入了373例SLE患者。获得SLE专科护理的中位时间为1.1（95%置信区间[CI]0.9 - 1.5）个月，诊断时间为30.6（95%CI 18.9 - 48.1）个月，开始治疗的时间为4.7（95%CI 3.9 - 8.4）个月。约25%的患者（373例中的93例）在获得专科护理方面经历了延迟，这与首次SLE相关就诊时较少的SLE表现相关（少于两个SLE领域；92%对72%，P < 0.001）。有皮肤黏膜或肌肉骨骼表现的患者经历延迟的可能性较小，而血液学（优势比[OR]1.71，95%CI 1.03 - 2.84）或抗磷脂抗体领域（OR 6.05，95%CI 2.46 - 14.88）与延迟相关。延迟与首次获得SLE专科护理时的损伤相关（SDI≥1；30%对7%，P < 0.001）。