OBJECTIVES: Sickle cell disease (SCD) is a hereditary red blood cell (RBC) disorder characterized by sickle-shaped RBCs due to abnormal hemoglobin leading to hemolysis, vaso-occlusive crises (VOCs), and significant morbidity and mortality. This study aimed to understand healthcare resource utilization (HCRU) among patients with SCD with recurrent VOCs in the Netherlands.

METHODS: This longitudinal, retrospective cohort study used data from the PHARMO Data Network in the Netherlands. Patients with a diagnosis of SCD were identified between 01/01/2014 and 12/31/2020 and were required to have ≥2 VOCs in any 2 consecutive 12-month periods during the eligibility timeframe. A VOC was defined as SCD with pain crisis, priapism, splenic sequestration, or acute chest syndrome. The index date was the date when the second VOC occurred in the second 12-month period. Patients were required to have data for 12 consecutive months before and after their index date. Patients with hereditary persistence of fetal hemoglobin, sickle cell trait, α-thalassemia, or hematopoietic stem cell transplant were excluded. Patients were followed from the index date until the earliest occurrence of death, loss to follow-up, or the end of the study period (12/31/2021). Demographics were assessed at the index date and HCRU was summarized during the follow-up period.

RESULTS: A total of 383 patients met the inclusion criteria for SCD with recurrent VOCs. The mean age at index was 26.9 years, and 53.3% were female. The mean duration of follow-up was 3.1 years. Patients had a mean of 2.5 inpatient hospitalizations, 13.9 days spent in the hospital, and 7.0 outpatient specialist visits (all per-patient-per-year [PPPY]). Among a subset of patients with outpatient pharmacy data available (N=64), patients had a mean of 20.7 prescriptions dispensed PPPY during follow-up.

CONCLUSIONS: There is substantial HCRU associated with the care of patients with SCD in the Netherlands, driven by frequent hospitalizations.