系统性红斑狼疮患者的临床表现、护理途径和获得专业护理的延迟：狼疮中西部网络研究》（LUMEN 💡）。

IF 3.7 2区医学 Q1 RHEUMATOLOGY

Arthritis Care & Research Pub Date : 2024-10-14 DOI:10.1002/acr.25445

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

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引用次数: 0

摘要

目的描述系统性红斑狼疮（SLE）患者的发病情况和护理路径，以及获得系统性红斑狼疮专科护理的延迟情况：方法：我们从狼疮中西部网络登记处纳入了系统性红斑狼疮患者。我们估算了从首次出现系统性红斑狼疮临床表现到获得系统性红斑狼疮专科治疗、医生诊断和治疗的时间。延迟时间的定义是：获得专业治疗的时间≥6 个月。我们比较了延误和未延误患者的系统性红斑狼疮表现、疾病活动度（SLEDAI-2k）和 SLICC/ACR 损伤指数（SDI）。逻辑回归模型评估了与延误的关联：研究纳入了 373 名系统性红斑狼疮患者。获得系统性红斑狼疮专科治疗的中位时间为1.1个月（95% 置信区间[CI] 0.9-1.5）；确诊时间为30.6个月（95% CI 18.9-48.1）；开始治疗时间为4.7个月（95% CI 3.9-8.4）。约有 25% 的患者（93/373）在接受专业治疗时出现延误，这与首次系统性红斑狼疮相关就诊时系统性红斑狼疮表现较少有关：患者接受治疗的途径各不相同。四分之一的患者在接受系统性红斑狼疮专科治疗时经历了延误，这与损害有关。较少的表现、血液学或抗磷脂抗体与延误有关。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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

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.

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来源期刊

Arthritis Care & Research RHEUMATOLOGY-

CiteScore

9.40

自引率

6.40%

发文量

368

审稿时长

3-6 weeks

期刊介绍： Arthritis Care & Research, an official journal of the American College of Rheumatology and the Association of Rheumatology Health Professionals (a division of the College), is a peer-reviewed publication that publishes original research, review articles, and editorials that promote excellence in the clinical practice of rheumatology. Relevant to the care of individuals with rheumatic diseases, major topics are evidence-based practice studies, clinical problems, practice guidelines, educational, social, and public health issues, health economics, health care policy, and future trends in rheumatology practice.