OBJECTIVES: The study evaluated the impact of sickle cell disease (SCD) and vaso-occlusive crises (VOCs) on education, employment, and household income among US-based adults.

METHODS: US-based adults with SCD (N=262) who completed an online survey in 2018/2019 were compared with matched general population controls (N=786) from the 2017 US Current Population Survey. Each adult with SCD was matched with 3 general population controls on age, gender, race, and region of residence. Total impact and differential impact by number of VOCs in the past year (0, 1-2, ≥3) were evaluated by ordinal and multinomial logistic regression (alpha=0.05).

RESULTS: Individuals with SCD and matched general population controls had significant differences in the distribution of education, employment, and household income (all P<.0001). Compared to matched controls, more individuals with SCD had a college degree (61.1% vs. 34.8%). However, those with SCD were less likely to be employed full-time (28.2% vs. 53.4%) and more likely to be unemployed due to disability (30.9% vs. 5.6%). Individuals with SCD reported significantly lower household income than matched controls, with more than half reporting less than $25,000 per year (51.7% vs. 27.0%). Significant differential effects of VOC frequency were found for employment and household income (P=0.001 and 0.005 respectively), but not for education. Compared to matched controls, individuals with SCD with ≥3 VOCs had the greatest risk of being out of the labor force or unemployed (OR=4.08, 95% CI=2.87-5.81) and having low household income (OR=3.81, 95% CI=2.72-5.33), while those with 0 VOCs did not experience higher risk (employment OR=1.42, 95% CI=0.38-5.38; household income OR=0.72, 95% CI=0.22-2.32). The impact of SCD on education, employment, and household income did not differ by age or gender.

CONCLUSIONS: Despite high educational attainment in general, adults with SCD experience substantial impact on employment and household income. This impact is particularly severe for those with more frequent VOCs.