Variation Observed in Pediatric Systemic Lupus Erythematosus Care Delivery Metrics

According to the study results published in ACR Open Rheumatology, significant variations in performance were identified by disease, treatment, and caregiver characteristics using an index of recommended pediatric systemic lupus erythematosus (pSLE) care statistics.

Researchers previously developed a 13-item pediatric lupus care index (p-LuCI) and in the current cross-sectional study, the goal was to analyze baseline p-LuCI and component performance and identify demographic, disease-specific, and vendor-level factors of index variation in pSLE and mixed connective tissue disease (MCTD) .

A total of 110 patients (99 with pSLE and 11 with MCTD; mean age 18 years; 80.9% adolescent girls; 34.6% black) were included in the analysis. The median p-LuCI was 65.2% (interquartile range 9.1%-92.3%). The performance range for individual components was 27.3% for timely scheduling to 95.4% for steroid-sparing treatment.

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Factors independently associated with higher scores were use of disease-modifying antirheumatic drugs (β = 14.3; 95% CI, 1.5-27.2; P = 0.03), nephritis (β = 10.4; 95 % CI, 5.1-15.8; P = .001), higher provider pSLE/MCTD volume (β=3.1 per patient; 95% CI, 1.9-4.2 per patient; P < .001) , assignment to rheumatology co-trainee (β=36.3; 95% CI, 17.3 -55.2; P = .001), and disease duration of less than 1 year (β=12.6; 95% CI, 0.7-24.5; P = .04). There were no observable differences by race, ethnicity and insurance.

Study limitations include the fact that the relationship between the p-LuCI and patient outcomes was not assessed; p-LuCI is designed to assess definable and operational measures that can be improved; the measures considered important by clinicians were based on evidence-based recommendations; and developing accurate measures of proper stress-dose steroid planning has not been possible in other centers.

Researchers concluded, “Common metric definitions will be critical to drive center improvement in a planned pSLE learning health system.”


Burnham JM, Cecere L, Ukaigwe J, Knight A, Peterson R, Chang JC. Factors associated with variation in pediatric systemic lupus erythematosus care delivery. ACR Open Rheumatol. 2021;3(10):708-714. doi:10.1002/acr2.11314

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