Cost of treatment of childhood-onset systemic lupus erythematosus

Objective. To determine the direct cost of care of children with childhood-onset systemic lupus erythematosus (cSLE), and to determine the direct cost per quality-adjusted life year (QALY) with cSLE. Methods. Administrative databases from 2 large tertiary pediatric rheumatology centers in the United States were reviewed for all patients with cSLE (n = 119) diagnosed and regularly treated in these centers between January 2001 and April 2004. Health-related quality of life estimates for patients with cSLE (n = 297) reported in the literature were used to calculate QALYs based on global health ratings of the Child Health Questionnaire (range 0-100). Results. Information on 3,184 patient-months of followup was included in the analysis. During a mean ± SD followup of 27 ± 11.8 months, the direct cost of care for the cohort amounted to $3,965,048, excluding outpatient medications. Irrespective of patient sex, the mean ± SD cost of cSLE per month was $1,245 ± $2,352, or ∼$14,944 per year. Inpatient and day hospital care accounted for 28% of the cost, laboratory testing accounted for 21%, inpatient/day-patient medication costs accounted for 13%, and dialysis accounted for 11%. Visits to the rheumatology clinic only contributed 9% to the direct cost of care. When including an estimated outpatient medication cost of $1,190, the direct cost of cSLE per QALY was $30,908. Conclusion. Children diagnosed with cSLE were found to have a considerable direct cost of care. The treatment of cSLE appears to be far more costly than that of adult SLE and juvenile idiopathic arthritis reported in the literature.