Burden of employment loss and absenteeism in adults and caregivers of children with sickle cell disease.

Sickle cell disease (SCD) is a genetic disorder affecting 100,000 people with estimated annual medical costs of $3 billion in the US; however, the economic impact on patients is not well described. We aimed to examine the indirect economic burden and to test the hypothesis that socioeconomic status and greater social vulnerability risks are associated with increased absenteeism and employment loss. We surveyed adults and caregivers of children with SCD at five US centers during 2014-2021. Logistic regression models were used to examine associations of employment loss and missed days of work with demographics and social determinants. Indirect costs were estimated by multiplying self-reported missed days of work and job loss by 2022 average wages by state of participating institution. Of the 244 participants, 10.3% reported employment loss in the last 5 years, and 17.5% reported missing 10 or more days of work. Adults had three times more employment loss compared to caregivers of children with SCD (OR 3.18, 95%CI 1.12-9.01) but fewer missed days of work (OR 0.24, 95%CI 0.11-0.0.51). Participants who did not live with a partner reported increased employment loss (OR 4.70, 95%CI 1.04-21.17) and more missed days of work (OR 4.58, 95%CI 1.04-20.15). The estimated annual indirect economic burden was $2,266,873 ($9,290 per participant). Adults with SCD and caregivers of children with SCD commonly report employment loss and missed days of work with important risk factors. The high indirect economic burden suggests that future economic evaluation of SCD should include SCD-related indirect economic burden.