The Burden of Transfusion Dependence on Caregivers of Patients with Lower-Risk Myelodysplastic Syndromes in North America and Europe
Authors: Diez-Campelo Maria , Park Sophie , Iraca Tracey , Glassberg Mrudula B. , DeCongelio Marc , Bulkley Alison , Olopoenia Abisola , Lord-Bessen Jennifer , Skiles Grace , Aguinaga Katie , Paudel Neelanzana , Will Oliver , Miteva Dimana , Hughes Christina , Hnoosh Ahmed , Yucel Aylin 
Published: December 2024

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.