Multi‐national survey of transfusion experiences and preferences of patients with myelodysplastic syndrome
Bibliographic record
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.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.004 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".