Estimated Life Expectancy and Income of Patients With Sickle Cell Disease Compared With Those Without Sickle Cell Disease

Abstract

IMPORTANCE Individuals with sickle cell disease (SCD) have reduced life expectancy; however, there are limited data available on lifetime income in patients with SCD. OBJECTIVE To estimate life expectancy, quality-adjusted life expectancy, and income differences between a US cohort of patients with SCD and an age-, sex-, and race/ethnicity-matched cohort without SCD. DESIGN, SETTING, AND PARTICIPANTS Cohort simulation modeling was used to (1) build a prevalent SCD cohort and a matched non-SCD cohort, (2) identify utility weights for quality-adjusted life expectancy, (3) calculate average expected annual personal income, and (4) model life expectancy, quality-adjusted life expectancy, and lifetime incomes for SCD and matched non-SCD cohorts. Data sources included the Centers for Disease Control and Prevention, National Newborn Screening Information System, and published literature. The target population was individuals with SCD, the time horizon was lifetime, and the perspective was societal. Model data were collected from

<p>Patient-Reported Outcomes and Economic Burden of Adults with Sickle Cell Disease in the United States: A Systematic Review</p>

“…48 A recent cohort simulation modeling study by Lubeck et al (published outside of the time span of our SLR) evaluated the association between SCD and lifetime income and found a lost income of $695,000 for an individual with SCD compared to a matched individual without SCD. 49 Considering the variability of evaluated outcomes across the above-mentioned studies and that most cost data are now outdated, future studies should be designed to estimate both direct and indirect costs and evaluate the cost of treating SCD-related complications in light of recent approved treatments. Since SCD is associated with significant morbidity and can directly affect work productivity, evaluating the size of income loss and recent direct costs associated with SCD would better quantify the economic burden from a societal perspective.…”

Improved health care utilization and costs in transplanted versus non-transplanted adults with sickle cell disease

“…It is estimated that patients with SCD have $695,000 of lost income over their lifetime due to SCD-related complications and early mortality. [30] Hematopoietic stem cell transplantation may help regain this lost income of individuals with SCD, on top of the suggested improvement in HCU, and this will need to be investigated in future studies.…”

Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects

“…6 A recent modeling study showed a lower projected life expectancy (54 vs 76 years) and quality-adjusted life expectancy (33 vs 67 years) for individuals with SCD relative to those without SCD. 7 Data from California are even more concerning: recent estimates put the mean age at death at 43 years for women and 41 years for men with SCD. 8 Adults living with SCD are often medically and socially complex and experience significant health disparities.…”