Abstract
BACKGROUND: We estimated the frequency of catastrophic healthcare expenditure(CHE), and their determinants in Indian patients with systemic lupus erythematosus(SLE). METHODS: This was a cross-sectional, questionnaire-based survey conducted by the Lupus Special Interest Group of the Indian Rheumatology Association across 14 centers. Patients with SLE diagnosed as per SLICC-2012 on follow-up for at least 1-year were interviewed regarding annual disease-related expenditures including direct (medical and non-medical) and indirect costs. CHE was defined as > 20% of the annual income. Results are presented in Indian currency (INR), wherein 100 INR = 1.19 USD = 1.1 EURO. RESULTS: We included 655 patients with SLE [92.7% women], with a mean age of 32.9 ± 11.6 years. The median direct annual expenditure was INR 52400(30810,96300), largest component being cost of medications [INR 24000(12000,40000) and hospitalizations [INR 35000(14400,90000)] One-third of patients(n = 237,36.2%) suffered CHE; they were older [AOR1.01(0.99,1.03)], had lower level of education [AOR1.95(1.01,3.81)], belonged to lower socio-economic-strata[AOR 9.63(5.66,16.4)], had renal and/or neuropsychiatric lupus [AOR1.42(0.99,2.06)] and higher damage(SDI) [AOR1.84(1.22,2.77)]. The median annual indirect cost was INR16416(5016,52896). Three-fourths(73.7%) of the participants incurred out-of-pocket expenses for their healthcare. The employed population was low(n = 187;28.3%), and the absenteeism rate was 24%. CONCLUSION: Hospitalization and medication costs are major factors driving exponentially high out-of-pocket expenses, resulting in CHE in one-third of patients with SLE in India. CLINICAL TRIAL NUMBER: Not applicable.