Lupus & antiphospholipid syndrome

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

Arthritis Care Res (Hoboken)Published Cohort study

Authors' conclusion

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.

Study context

Population
Patients with incident systemic lupus erythematosus (SLE) from the Lupus Midwest Network registry
Participants
373 patients
Exposure
Patients with vs without delays in access to SLE-specialized care
  • Delaysn = 93
Outcome
Time from first medical encounter for SLE clinical manifestation to access to SLE-specialized care, physician diagnosis, and treatment; delays in access to specialized care
Methodological detailsregistry-based, logistic regression
  • Registry-based
  • Logistic regression

Main finding

As reported in the abstract

Times from first SLE-related encounter

Median time to access SLE-specialized care, months

1.1

95% CI 0.9–1.5

Median time to diagnosis, months

30.6

95% CI 18.9–48.1

Median time to treatment initiation, months

4.7

95% CI 3.9–8.4

Patients with delays accessing specialized care (93 out of 373)

≈25%

Observational data: associations, not effects.

Further findings

Fewer than two SLE domains at first SLE-related encounter

P < 0.001

Damage at first access to SLE-specialized care (SDI ≥1)

P < 0.001

Manifestation domains associated with delays

OR (95% CI)
Hematologic domain1.71 (1.03–2.84)
Antiphospholipid antibodies domain6.05 (2.46–14.88)
Mucocutaneous or musculoskeletal manifestations less likely to experience delays

Original publication

Clinical Presentation, Care Pathways, and Delays in Access to Specialized Care in Patients With Systemic Lupus Erythematosus: A Study From Lupus Midwest Network (LUMEN). Arthritis Care Res (Hoboken). Published 14 November 2024. doi:10.1002/acr.25445

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