RESUMO
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 (ß = 14.3 [95% confidence interval (CI), 1.5-27.2]), nephritis (ß = 10.4 [95% CI, 5.1-15.8]), higher provider pSLE/MCTD volume (ß = 3.1 [95% CI, 1.9-4.2] per patient), assignment to rheumatology fellow trainee (ß = 36.3 [95% CI, 17.3-55.2]), and disease duration of less than 1 year (ß = 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.
