Factors Associated With Variation in Pediatric Systemic Lupus Erythematosus Care Delivery

OBJECTIVE: Patients with pediatric systemic lupus erythematosus (pSLE) and mixed connective tissue disease (MCTD) receive only a fraction of recommended care. Using published quality indicators and guidelines, we developed a 13‐item pediatric lupus care index (p‐LuCI) to quantify the proportion of recommended clinical evaluations and comorbidity prevention interventions completed and the timeliness of follow‐up. Our objective was to assess baseline index performance and identify sources of p‐LuCI variation. METHODS: We performed a cross‐sectional study in patients with pSLE or MCTD and analyzed the performance of individual p‐LuCI process metrics and calculated the overall p‐LuCI score. We identified factors associated with the p‐LuCI using multivariable linear regression with clustering by provider. RESULTS: For 110 patients (99 with pSLE and 11 with MCTD), the median p‐LuCI was 65.2% (interquartile range: 9.1‐92.3%). Component performance ranged from 27.3% (on‐time scheduling) to 95.4% (steroid‐sparing treatment). Patients with p‐LuCI scores above the median had higher scores across all 13 components. Higher p‐LuCI scores were independently associated with disease‐modifying antirheumatic drug use (β = 14.3 [95% confidence interval (CI), 1.5‐27.2]), nephritis (β = 10.4 [95% CI, 5.1‐15.8]), higher provider pSLE/MCTD volume (β = 3.1 [95% CI, 1.9‐4.2] per patient), assignment to rheumatology fellow trainee (β = 36.3 [95% CI, 17.3‐55.2]), and disease duration of less than 1 year (β = 12.6 [95% CI, 0.7‐24.5]). Differences by race, ethnicity, and/or insurance were not observed. CONCLUSION: Using an index of recommended pSLE care metrics, we identified significant variation in performance by disease, treatment, and provider characteristics. The p‐LuCI may be useful to assess care quality at the patient, provider, and practice levels and to identify areas in need of greater standardization.