Abstract

Background: Despite a reduction in morbidity and mortality associated with the use of disease modifying therapies, sickle cell disease (SCD) remains associated with high healthcare resource utilization (HRU), primarily attributed to vaso-occlusive crisis (VOC). (1, 2) There are limited national estimates on HRU, cost of medical care, and treatment expenditures for patients with SCD in Lebanon. A better understanding of these estimates may provide new perspectives to improve access to high-quality cost-effective health care services. Aims: We aimed to evaluate patterns of HRU and related cost in a cohort of patients with SCD receiving care in a Comprehensive SCD referral center at NINI hospital in North Lebanon. Methods: A retrospective non-interventional observational study was conducted among 136 patients (54.4% females) with confirmed diagnosis of SCD in North Lebanon. Data on HRU including emergency department (ED) visits, ambulatory visits and hospitalizations collected in a patient health information (PHI)-anonymized format during the period 01 May2018 - 30 Apr 2020 were obtained from patients’ paper and electronic medical files, as well as hospital and ED files. Uncomplicated VOCs were defined as pain crises, whereas complicated VOCs were defined as acute chest syndrome, acute splenic sequestration, acute hepatic sequestration or priapism. The annual rate of HRU visits was calculated as a ratio of the total number of visits to the total number of years of follow-up across all patients. The average annual cost was similarly calculated as the ratio of total cost of these visits to the total number of years of follow-up, based on available data. Results: In the present study, the median age of patients at the time of study was 10.8 years (IQR 5.3 to 19.6 years). Majority of patients were diagnosed with SS (72.1%) and Sβ0 (21.3%) genotype across all age groups. Pain crisis (90.4%), fever (43.4%), acute chest syndrome (33.1%), and acute splenic sequestration (22.8%) were the most common SCD-related complications. The annual rate of HRU visits (per patient) was 5.7. Uncomplicated VOCs led to majority of hospitalizations, ICU and ED visits in adult patients (age >16 years). The average annual costs of HRU were 8,270,920 Lebanese pounds (LBP) amounting to 5,514 USD (per patient per year) of which 92.1% was for hospitalizations, 4% for ED visits and 3.9% for ambulatory visits. Annual costs for ED, ICU and hospitalizations were highest for uncomplicated VOC. Costs related to medications, diagnostics, non-hematologist medical consults, uncompensated care and lost productivity are not included in this analysis. Analgesics, folic acid and hydroxyurea were the most frequently administered medications across all age groups with 84% of patients being treated with hydroxyurea. Conclusion: This real world study reveals that SCD and its related complications resulted in significant acute HRU. VOCs remain the primary factor for resource use, ICU admission and costs with the largest proportion of annual cost being attributed to hospitalizations. Despite the high HRU rate in this relatively young SCD cohort, the cost of HRU in a comprehensive setting with effective outpatient management as that in North Lebanon appears affordable for the health care system. However when additional SCD related and non SCD related costs of care are included, the economic burden of SCD care is likely to be significantly higher than the figures reported.

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