Transfusion dependence is common for patients with myelodysplastic syndromes (MDS), but real-world data show inconsistent patient experiences and varied transfusion practices between countries.
In patients with myelodysplastic syndromes (MDS), transfusion dependence on red blood cells (RBCs) is a common occurrence that affects patient quality of life. However, real-world transfusion practices for these patients have not been thoroughly researched. A study published in Transfusion surveyed real-world patients with MDS who are reliant on RBC transfusion to gain an understanding of their experiences and preferences.
A total of 711 patients in the United States, Canada, and the United Kingdom responded to the web-based survey between August 2017 and January 2018. Of those patients, 447 had had an RBC transfusion in the last 8 weeks, making them eligible for the study. A total of 344 patients completed the entire survey, and 103 responded to some of the survey questions. The study examined a range of transfusion aspects, including general transfusion characteristics, related symptoms, the impact of the process on patients, and patient preferences.
Overall, 35% of patients started receiving transfusions at diagnosis, while 28% initiated transfusions within the first year after diagnosis. Fifty percent of respondents went to transfusion centers twice or more within 4 weeks, and 80% of patients were aware of their hemoglobin transfusion threshold. There were a range of thresholds, with 76% of patients reporting a threshold of 80 g/L or lower. In the United States, a larger proportion of patients were transfused at 70 g/L or lower (27%) compared with Canada and the United Kingdom collectively (12%).
Common patient concerns ahead of initial transfusion included adverse effects, blood supply safety, and time commitment (50%, 48%, and 20%, respectively). Most patients (87%) felt they had been sufficiently counseled on the risks and benefits of transfusion, but some patients (23%) felt that they had not been well informed about the overall process of transfusion.
Patients also reported a range of symptoms prior to transfusion, with the most common being fatigue, shortness of breath, weakness, and dizziness (91%, 72%, 69%, and 43%, respectively). Patients reported a range of symptom duration, from less than 1 day to 5 or more days. Some did not report any symptoms. Most patients (75%) reported taking longer than 1 day to feel symptom relief post transfusion, 12% reported taking 3 to 5 days, 3% reported taking 5 or more days, and 7% reported they did not feel better post transfusion. Some respondents (20%) reported often feeling worse post transfusion, most of whom felt worse for 1 to 2 days or longer. The most pretransfusion symptoms that had the greatest impact on patients were fatigue and shortness of breath.
As far as potential improvements to the process, most patients felt that checking their blood counts with an at-home machine and identifying their individual hemoglobin thresholds before pretransfusion symptoms started would be helpful. Some patients (26%) reported they would prefer to be transfused at a higher hemoglobin threshold than their current minimum. Of those patients, 62% would prefer a threshold of 85 g/ L minimum and 20% would prefer a threshold of at least 100 g/L.
Although the study was limited by its computer-reliant nature and selection bias because it was sent to MDS patient support mailing lists, the survey found that transfusion-dependent patients with MDS had varied experiences and preferences with RBC transfusions. Further research to identify ideal transfusion thresholds and best practices to optimize the patient experience could help improve quality of life for those with transfusion-dependent MDS.
Vijenthira A, Starkman R, Lin Y, et al. Multi-national survey of transfusion experiences and preferences of patients with myelodysplastic syndrome. Transfusion. Published online June 10, 2022. doi:10.1111/trf.16946