The Burden of Transfusion Dependence on Caregivers of Patients with Lower-Risk Myelodysplastic Syndromes in North America and Europe
Bibliographic record
Abstract
Introduction: Patients with lower-risk myelodysplastic syndromes (LR-MDS) who are dependent on red blood cell transfusions (RBCTs) often face substantial disruptions to their time and daily lives due to the frequent demands of their long-term disease and its treatment. However, the burden of transfusion dependence (TD) on the caregivers of patients with LR-MDS has not been well characterized. Methods: This was a cross-sectional survey assessing the burden of RBCTs on caregivers of TD patients with LR-MDS in the USA, Canada, Germany, France, Spain, and Italy (August 2023-January 2024). Surveys were developed based on input from patient advocates, clinical experts, published literature, and exploratory interviews. Eligible participants were caregivers of patients ≥ 18 years of age with a diagnosis of LR-MDS and ≥ 2 RBCTs in the previous 4 months. The MDS Foundation (USA only) and a contract research organization recruited convenience samples of patients and their caregivers in each country. All participants provided informed consent. Results: A total of 120 caregivers completed the surveys (Canada, n = 31 [26%]; Italy, n = 30 [25%]; Germany, n = 29 [24%]; France, n = 16 [13%]; USA, n = 10 [8%]; Spain, n = 4 [3%]). The mean age was 55 years, 60% were women, and all were the primary or co-primary caregiver for their person with LR-MDS (patient mean age, 69 years). Almost half (48%) of caregivers were spouses/partners of their person with LR-MDS and 70% lived with the patient. Caregivers reported their person with LR-MDS had a mean of 6.3 RBCT visits in the previous 4 months (median, 6.0; equating to an annual mean of 18.9 and median of 18.0 RBCT visits). Caregivers reported that their lives were impacted somewhat, quite a bit, or a lot in terms of their ability to perform daily activities (61%), physical health (52%), emotional health (77%), and social life (82%). Most caregivers reported reduced time with family/friends (63%) and social events (75%) due to caregiving (sometimes, often, or always), as well as feeling stressed about caregiving responsibilities (69%). Nearly all caregivers (84%) reported providing emotional support for their person with LR-MDS and worrying about their person's future health (91%) and life expectancy (90%). Caregivers noted that RBCTs take too much time from their person's life (82%); they worried both about the patient possibly needing more RBCTs in the future (80%), and about blood shortages (64%). The most common MDS-related assistance reported by caregivers was medical appointment transportation (92%), household duties (84%), scheduling appointments (79%), and picking up medications (78%). In the previous 6 months, caregivers reported accompanying their person with MDS, on average, 4.8 times for RBCT visits, 5.7 times for lab tests, and 5.9 times for healthcare provider visits in addition to RBCT visits, equating to approximately 2.7 transfusion and lab visits per month. In addition to RBCT visits, caregivers spent a mean of 93.3 hours/month helping their person with LR-MDS. These included LR-MDS-related administrative tasks including assistance with personal hygiene, RBCT-related travel, getting insurance verification, managing billing issues, and scheduling appointments. Nearly half (45%) of caregivers were employed full-time (n = 38, 32%) or part-time (n = 16, 13%). More than half of employed caregivers (56%, n = 30) missed ≥ 1 workday in the previous 3 months and 25% feared they would have to retire early due to caregiving. Overall work productivity for employed caregivers was impaired by a mean of 38% (a composite of working time, absenteeism, and presenteeism), with 8% of work time missed (absenteeism) and 35% of work performance impaired (presenteeism). Caregivers reported overall activity impairment of 51%. Conclusions: Overall, caregivers of TD patients with LR-MDS reported a negative impact of MDS and RBCT on their time, employment, and well-being. These findings emphasize the downstream impact that effective, less burdensome treatment regimens may have on the people in the lives of patients with LR-MDS in addition to the patients themselves.
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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 | 0.003 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.001 | 0.000 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.001 | 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".