BACKGROUND: Decreased quality of life (QOL) due to fatigue in the setting of anemia is common with myelodysplastic syndromes (MDS), often leading to dependence on red blood cell (RBC) transfusions. Moreover, the COVID-19 pandemic has resulted in considerably reduced blood supply such that the importance of conserving donor RBCs for patients particularly in need is even more crucial (Shander, Anesth Analg 2020). While some patients with MDS experience improved QOL after transfusions, many do not, even at the same ECOG performance status (PS) and hemoglobin (Hb). In a pilot study, we sought to assess the feasibility of a peri-transfusion QOL assessment (PTQA; QOL assessed before and after transfusion) to determine if it could help inform future transfusion decisions for patients with MDS.

METHODS: Starting in 2019, patients with MDS at Dana-Farber Cancer Institute, Yale School of Medicine, and Wake Forest University were screened for eligibility using clinic schedule reports in Epic; those 18 or older with biopsy-proven MDS presenting to clinic for RBC transfusions with no evidence of known CHF or unstable angina were eligible to participate. A Hb threshold of 7.5 g/dL or greater was required for participation (Tanasijevic, Leuk Lymph 2020). The QUALMS, a validated PRO for patients with MDS (Abel, Haematologica, 2016), was used to assess patients' QOL before and after RBC transfusion. At consent, patients were given a study packet including a copy of the QUALMS and were instructed to fill out the survey the day before their upcoming transfusion. One week after RBC transfusion, the patient completed the QUALMS again. Surveys were scored, compared, and compiled into a report that was sent to patients and providers (Figure). Based on the QUALMS validation study, we considered a change by 5 or more points to be potentially clinically significant. After descriptive statistics, two-sided Fisher's Exact tests assessed for associations between patient characteristics (ECOG PS and Hb) and post-transfusion increase in QOL.

RESULTS: As of July 2020, a total of 57 patients had been enrolled. Of these, 28 (49%) have completed PTQA with both a pre-transfusion and post-transfusion QUALMS. Mean age was 72 years (standard deviation (SD)=11.6), 19% were female, and 89% had had one or more RBC transfusions within 8 weeks prior to enrollment. For the 29 patients who did not undergo PTQA, 11 are still awaiting their index transfusion; 4 passed away before the index transfusion; 4 were transplanted before the index transfusion; 2 developed AML; 7 later became ineligible or were lost to follow up; and 1 withdrew consent. Of the 28 who underwent PTQA, about half had an ECOG performance status of 1, and median Hb at transfusion was 8.05 g/dL (Table). The mean pre-transfusion QUALMS score was 56.1 (SD=15.3) and post-transfusion score was 59.3 (SD=18.0); overall, 35.7% experienced an increase in QOL. Patients with ECOG PS of 1 or 2 were no more likely to have an increase in QOL after RBC transfusion compared to those with PS of 0 (p=1.00). In contrast, 50% of patients with pre-transfusion Hb < 8.0 g/dL had an increase in QOL compared to 25% of patients with Hb >= 8.0 g/dL, although this difference also did not reach significance (p=0.24).

CONCLUSIONS: Although PTQA was feasible for about half of patients enrolled, there were many barriers when working with this high-risk MDS population. Moreover, only about one-third of patients experienced an increase in QOL one week after RBC transfusion, arguing that, for some patients, a more limited transfusion schedule may be possible.


No relevant conflicts of interest to declare.

Author notes


Asterisk with author names denotes non-ASH members.