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

Details

• Alternative Title:
  Arthritis Care & Research, 2025, v. 77, no. 4: Clinical Presentation, Care Pathways, and Delays in Access to Specialized Care in Patients With Systemic Lupus Erythematosus: a Study From Lupus Midwest Network (LUMEN).
• Journal Article:
  Arthritis Care & Research
• Personal Author:
  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
• Description:
  We aimed to characterize presentation and care pathways of patients with systemic lupus erythematosus (SLE), and delays in access to SLE-specialized care.
  
  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.
  
  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).
  
  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.
• Content Notes:
  Author manuscript
• Subjects:
  • Humans
  • Lupus Erythematosus, Systemic
  • Female
  • Male
  • Adult
  • Middle Aged
  • Time-to-Treatment
  • Health Services Accessibility
  • Registries
  • Time Factors
  More +
• Keywords:
  • Systemic lupus erythematosus
  • healthcare access
  • diagnostic delays
  • specialized care
• Source:
  Arthritis Care & Research, 2025, v. 77, no. 4
• DOI:
  https://doi.org/10.1002/acr.25445
• ISSN:
  2151-464X ; 2151-4658
• Pubmed ID:
  39400527
• Pubmed Central ID:
  PMC13215449
• Document Type:
  Text
• Funding:
  U01 DP006491/DP/NCCDPHP CDC HHSUnited States/ ; UL1-TR-002377/TR/NCATS NIH HHSUnited States/ ; R01-AG-058738/AG/NIA NIH HHSUnited States/ ; U01 DP006703/DP/NCCDPHP CDC HHSUnited States/ ; U01-DP-006703/Centers for Disease Control and Prevention (CDC) of the US Department of Health and Human Services (HHS)/
• Genre:
  Journal Article
• Place as Subject:
  Midwestern United States
• Pages in Document:
  451-459 (18 pdf pages)
• Volume:
  77
• Issue:
  4
• Download URL:
  https://stacks.cdc.gov/view/cdc/261986/cdc_261986_DS1.pdf
• File Type:
  [PDF - 123.96 KB]
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha-512:77724cbc5f5313f8ea6f76500a808c28d11d8c8fe663e0cbce4e6b72fbfff147e5b11b12c0c25c1b9f14786032d660b8118ae7750ad7b7484abd0add97f84db6