The Forgotten Costs of SLE: Estimating Indirect Costs in a National SLE Cohort

Objectives Economic analyses of SLE often include only direct healthcare costs. Indirect costs, particularly from lost productivity in unpaid labor, are often overlooked, especially relevant for a disease disproportionately affecting women. We assessed indirect costs due to lost productivity in both paid and unpaid labor, stratified by gender, in a national multicenter SLE cohort. Methods Patients fulfilling ACR or SLICC SLE Classification Criteria completed a validated questionnaire on lost productivity. Total indirect costs included: 1) absenteeism (time lost from paid labor because of illness), 2) presenteeism (degree of productivity impairment in paid/unpaid labor), 3) opportunity costs (additional time patients would be working in paid/unpaid labor if not ill). Opportunity costs were calculated as the difference between the time patients worked versus an age, sex, and geographic-matched general population in paid and unpaid labor. Indirect costs from paid and unpaid labor were valued using age-and-sex-specific wages from Statistics Canada. The association of gender with annual indirect costs was assessed (adjusted for race/ethnicity, age, disease duration, and the SLICC/ACR Damage Index [SDI]) using random effects linear regression modeling. Results 1804 patients participated, 90.8% female, 66.9% white, mean age at diagnosis 33.7 (SD 13.9) years, mean SLE duration 14.7 (11.7) years, and mean SDI 1.3 (range 0-12.0). Patients were followed a mean of 4.9 (range 1.0-9.6) years with 48.9% employed (49.5% among females, 44.0% among males) at the initial and 37.0% (37.1% among females, 36.7% among males) at the final observation. Overall, total annual indirect costs were $36 405 (absenteeism: $829; presenteeism in paid labor: $4624; presenteeism in unpaid labor: $8922; opportunity costs in paid labor: $8512; opportunity costs in unpaid labor: $13 519). Among women, opportunity costs from unpaid labor were 38.8% ($14 175/$36 538) and from paid labor 21.3% ($7802/$36 538) of total indirect costs; among men, opportunity costs from unpaid labor were 19.3% ($6765/$35 064) and from paid labor 44.7% ($15 685/$35 064) of total indirect costs (Figure 1). Regression modeling showed that women incurred higher opportunity costs from unpaid labor (coefficient $7309, 95% CI $3514, $11 105), and lower opportunity costs from paid labor (coefficient −$8336, 95% CI −$12 524, −$4147). Figure 1a: Components of Annual Indirect Costs: Female Total: $36 538 (2023 Canadian Dollars) Figure 1b: Components of Annual Indirect Costs: Male Total: $35 064 (2023 Canadian Dollars) Conclusion Indirect costs, particularly from unpaid labor, are substantial, especially in women, where they represent 38.8% of total indirect costs versus 19.3% in men. Hence, economic analyses weighing costs and benefits of novel/emerging therapies should incorporate costs resulting from lost productivity, particularly important for a disease that disproportionately affects women.

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