5613022 societal burden of sickle cell disease in the uk: empirical estimates of productivity loss and loss of future income using real-world evidence

Background: Sickle cell disease (SCD) is associated with high healthcare resource utilization (HCRU), lowered life expectancy, and unemployment. The combination of routine healthcare appointments, acute crises, and organ damage causes productivity loss (PL). Early death and long-term unemployment also lead to loss of future income (LFI). Both PL and LFI are important aspects of the burden of SCD on society, as lost income due to a genetic disease can have intergenerational impacts. Aims: To empirically quantify the societal cost of SCD using observed PL and estimated LFI. Methods: We identified 9272 patients aged ≥12 years with SCD using the English Clinical Practice Research Datalink (CPRD) linked with Hospital Episode Statistics between January 1, 2007 and March 31, 2019. We obtained mortality data from the Office of National Statistics (ONS) death register. To quantify PL, we assigned time to HCRU events based on Choi et al, 2019.1 We assessed PL due to sickness at home using doctors’ sick notes in the CPRD, assuming 10 days’ PL for each note. Patients could self-certify sickness without a doctor’s note for 7 days. We assumed a 5-day work week, with 1 day of 7.5 h based on the average 37.5 h UK work week. We estimated costs of PL by multiplying the mean hourly adult wage for the year the resource was used by the time lost. For patients aged 12 to 18 years, PL was attributed to a main caregiver using adult wages. We inflated the cost of PL to 2021 pounds sterling using the Consumer Price Index (CPI). Unemployment, medical retirement, and death were LFI events. Once patients were recorded as unemployed or medically retired, we assumed they never returned to work. We also assumed those who did not die lived past state retirement age, which is currently 68 years. Only observed events were used to calculate the discounted present value of LFI based on years from the earliest LFI event to age 68. The discount rate was 3.5%. We used the 2021 age-specific mean income from the ONS to estimate future income at each decade. Results: A total of 62.5% of patients were female; 73.5% were Black; mean (standard deviation) age was 36.3 (15.7) years. Median follow-up was 7.1 years (interquartile range 3.6-10.1). Mean cost of PL was £1821 per patient-year (PPY), equivalent to >3 weeks’ average 2021 UK weekly earnings (£586). Patients lost a mean of 5.5 days PPY in hospital stays, 2.7 days PPY in outpatient clinics, 3.6 days PPY for primary care visits, 1.1 days PPY in emergency care, and 2.2 days PPY for sickness at home. We estimated £510,315 LFI for each patient with an LFI event, equivalent to £30,546 per patient in the cohort. Of the 555 LFI events, 425 (76.6%) were deaths, occurring at a median age of 61 years. Unemployment accounted for 129 (23.2%) events occurring at a median age of 39 years. One person (0.2%) was medically retired at age 61. Summary/Conclusion: To our knowledge, this is the first study presenting empirical estimates of PL and LFI for patients with SCD from a large, nationally representative UK data set.Societal costs of SCD in the UK are substantial; PL due to healthcare appointments or to sickness at home is equivalent to >3 weeks’ lost earnings PPY. Those who cannot work or die of their disease lose over £500,000 in a lifetime. Our results are consistent with Lubeck et al, 2019, who estimated an LFI of $695,000 (£489,800, purchasing power parity inflated to 2021 using the CPI) from a simulated SCD cohort in the US.2 References 1. Choi H-J, Lee E-W. Methodology of Estimating Socioeconomic Burden of Disease Using National Health Insurance (NHI) Data: Evaluation of Health Services 2019. Accessed May 10, 2022. https://www.intechopen.com/chapters/70517 2. Lubeck D, Agodoa I, Bhakta N, et al. Estimated life expectancy and income of patients with sickle cell disease compared with those without sickle cell disease. JAMA Netw Open. 2019;2(11):e1915374. doi:10.1001/jamanetworkopen.2019.15374