Transfusion-Dependent Lower-Risk MDS: The Humanistic and Economic Burden on Patients in North America and Europe

Patients diagnosed with lower-risk myelodysplastic syndromes (MDS) frequently need red blood cell (RBC) transfusions to address anemia. Nevertheless, this transfusion requirement's emotional, physical, and time-related consequences remain unclear, and there is limited knowledge regarding the indirect financial implications of lower-risk MDS on individuals.

This study aimed to outline the emotional, physical, temporal, and indirect financial challenges experienced by individuals with transfusion-dependent lower-risk MDS.

A web-based survey was conducted in North America and Europe between August 2023 and January 2024. The survey targeted adult patients with lower-risk MDS who self-reported receiving ≥2 RBC transfusions in the previous 4 months. The survey aimed to assess various aspects related to RBC transfusions, including emotional and physical burdens, time burdens, out-of-pocket treatment costs (including prescription and over-the-counter medication costs), and indirect economic burden measured through work productivity and activity impairment using the Work Productivity and Activity Impairment scale.

Descriptive analyses were conducted for the overall sample, as well as for subgroups of lower-risk MDS patients with different levels of transfusion burden and patients who were either erythropoiesis-stimulating agent (ESA) treatment-naive or had previously received ESAs.

In total, 98 eligible patients completed the survey, including 8 patients from the United States, 17 from Canada, 29 from Germany, 10 from France, 31 from Italy, and 3 from Spain. Approximately half of the patients (51%) were male. The average age at the time of MDS diagnosis was 63 years, while the average age after the survey was 67 years.

Most participants (78%) expressed their dissatisfaction with their disease being RBC transfusion dependent. Most patients reported that their MDS affected their lives “quite a bit” or “a lot” in terms of their ability to perform daily activities (63%), physical health (67%), emotional health (64%), and social life (62%).

On average, each transfusion visit required 8.2 hours. The average duration spent on specific transfusion activities before transfusion appointments was 156 minutes, while on the day of transfusion, it ranged from 30 minutes in the waiting room before transfusion to 30 minutes receiving the transfusion. In the 6 months leading up to the survey, the average number of visits to any MDS healthcare provider was 9.4 for laboratory/blood tests, 8.6 for transfusions, and 5.1 for other MDS-related visits. The highest out-of-pocket costs per visit related to both MDS therapy and RBC transfusion were for hotel stays and childcare.

Patients reported missing 41% of work time and being impaired 52%, resulting in a 66% decrease in overall work productivity. They also reported 64% activity impairment due to their health. The emotional, time, out-of-pocket cost, and work productivity burdens were higher among patients with a heavier transfusion burden and those who were ESA naive.

Patients diagnosed with transfusion-dependent, lower-risk MDS face significant emotional, physical, and indirect economic challenges. RBC transfusion activities alone consume more than 8 hours of patients’ time during each visit, with most of this time spent on the day of the transfusion. Currently, an assessment is being conducted to analyze the burden experienced by caregivers of these patients.

Source: Campelo MD, Park S, Glassberg MB, et al. The humanistic and economic burden of transfusion-dependent lower-risk myelodysplastic syndromes on patients in North America and Europe. Madrid, Spain, & online: presented at EHA2024 Hybrid Congress; abstract P769.