Significant variation in performance by disease, treatment, and provider characteristics were identified using an index of recommended pediatric systemic lupus erythematosus (pSLE) care metrics, according to study results published in ACR Open Rheumatology.
Researchers previously developed a 13-item pediatric lupus care index (p-LuCI) and in the current cross-sectional study aimed to analyze baseline p-LuCI and component performance and identify demographic, disease-specific, and provider level factors of index variation in pSLE and mixed connective tissue disease (MCTD).
Overall, 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 range of performance for individual components was 27.3% for on-time scheduling to 95.4% for steroid-sparing treatment.
Factors that were independently associated with higher scores were the use of disease-modifying antirheumatic drugs (β=14.3; 95% CI, 1.5-27.2; P =.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 fellow 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 included the fact that the relationship between the p-LuCI and patient outcomes was not assessed; p-LuCI was designed to assess definable and operational measures that could be improved; the measures determined by clinicians to be important were on the basis of evidence-based recommendations; and developing accurate measures of appropriate stress-dose steroid planning was not possible at other centers.
Researchers concluded, “Common metric definitions will be critical to promote improvement across centers 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