Multi‐national survey of transfusion experiences and preferences of patients with myelodysplastic syndrome

Abstract

Background: Transfusion dependence on red blood cells (RBCs) is common for patients with myelodysplastic syndromes (MDS) but transfusion practice and experience for outpatients with MDS are largely unknown. Methods: We conducted a web-based cross-sectional multi-national survey to audit real-world transfusion practices and understand the experiences and preferences of patients with MDS requiring RBC transfusion. The survey comprised 57 questions and was distributed to patients in the United States of America, Canada, and the United Kingdom. Results: 447 respondents (45% female) with a median age of 72 years (IQR 66-77) were eligible on the basis of receiving an RBC transfusion in the last 8 weeks. There was wide variability in the hemoglobin thresholds for transfusion with the most common being <80 g/L. 40% of patients were transfused at a lower threshold (<70-75 g/L), with the largest proportion of these patients from the United States. Patients experienced significant symptoms prior to receiving a transfusion with fatigue and dyspnea having the most negative impacts on quality of life. Finally, patients endorsed two potential alterations to transfusion care that could improve their quality of life, including self-administered point of care testing of hemoglobin and higher hemoglobin transfusion thresholds. Of these patients, 62% preferred a threshold of at least 85 g/L, and 20% preferred a threshold of at least 100 g/L. Discussion: In summary, this multi-national survey of patients with MDS requiring RBC transfusions demonstrated substantial variation in patients' experiences and preferences that differed also by country, supporting the need for further comparative clinical trials of transfusion practice interventions.

Transfusion thresholds: the need for a patient-centered approach in hematologic disorders that require chronic transfusion therapy

“…Large variations were noted in personal preference for transfusion thresholds; however, 62% and 20% of patients preferred to have transfusion when their Hb levels were 8.5 g/dL and 10.0 g/dL, respectively. This finding was significantly different from those of previous studies and guidelines [16]. St Lezin et al measured the 6-min walk distance and fatigue/dyspnea-related QoL of 208 cancer patients (hematologic/oncology) who underwent outpatient-based transfusion.…”

“…In addition, Vijenthira et al . [ 16 ] evaluated the experience and preference of patients with MDS (N=447) in the U.S., U.K., and Canada and reported that patients experienced pre-transfusion fatigue and dyspnea and had decreased QoL. Large variations were noted in personal preference for transfusion thresholds; however, 62% and 20% of patients preferred to have transfusion when their Hb levels were 8.5 g/dL and 10.0 g/dL, respectively.…”

Current advances in 2022: A critical review of selected topics by the Association for the Advancement of Blood and Biotherapies (AABB) Clinical Transfusion Medicine Committee

“…A multinational survey of patients with MDS highlighted the importance of self‐reported patient quality of life in transfusion‐dependent patients when considering RBC transfusion thresholds, rather than hemoglobin alone 9 …”

Red cell transfusion thresholds in outpatients with myelodysplastic syndromes: results of a pilot randomised trial RBC-ENHANCE and a combined analyses with REDDS

“…Registry audits and physician surveys have identified the most common transfusion threshold to be a hemoglobin of 80 g/L in Europe, North America and Australia 12,13 . In an international survey, 25% of MDS patients wished they were transfused at higher hemoglobin thresholds than their current thresholds 14 . The UK-Australia/New Zealand REDDS study demonstrated the feasibility of randomizing TD MDS patients to liberal (transfuse if Hgb less than 105 g/L, to maintain Hgb 110-125 g/L) versus restrictive (transfuse if Hgb less than 80 g/L, to maintain Hgb 85-100 g/l) Hgb transfusion thresholds but required significantly more transfusions in the liberal arm 15 .…”