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The Hidden Impact: How MDS-Related Transfusion Dependence Affects Caregivers Too

Posted: Feb 28, 2025
The Hidden Impact: How MDS-Related Transfusion Dependence Affects Caregivers Too image

When we think about the challenges of living with transfusion dependence due to lower-risk myelodysplastic syndromes (LR-MDS), the focus is often on patients. Their time, health, and daily routines are undeniably disrupted. But there’s another group deeply affected by these challenges—the caregivers who shoulder the responsibilities of providing emotional, physical, and logistical support.

A recent study led by Maria Diez-Campelo, MD, PhD, and the Spanish MDS Team sheds light on caregivers' burdens. This team’s primary goal is to improve outcomes for MDS patients, but they also recognize that part of this goal includes supporting the patients’ loved ones.

Watch an interview with her here and/or continue reading for more information on this important subject.

A Closer Look at the Caregiver Burden

Caregiving for someone with LR-MDS who is dependent on red blood cell transfusions (RBCTs) is no small task. A cross-national survey involving caregivers from six countries, including the United States, Canada, and several European nations, revealed striking insights into the emotional, physical, and logistical toll caregiving takes.

Who Are These Caregivers?

  • Most caregivers in the survey (60%) were women, with an average age of 55 years.
  • Nearly half were spouses or partners, and 70% lived with the patient.
  • They reported their loved ones had an average of 6 RBCT visits over four months, translating to approximately 19 visits annually.

Time: A Constant Sacrifice

Caregivers reported spending over 93 hours per month assisting with tasks such as:

  • Accompanying patients to tranfusion visits, lab tests, and healthcare provider appointments.
  • Managing household duties, transportation, and medication pick-ups.
  • Dealing with insurance, billing, and scheduling-related tasks.

Frequent appointments and transfusions often dominated caregivers' schedules, leaving little time for themselves or their families.

Emotional and Social Strains

Caring for someone with LR-MDS goes beyond logistical support. Emotional and social strains are some of the most grueling when it comes to caregiving. 

  • 77% of caregivers said their emotional health was affected, with many feeling stress and worry about their loved one’s future.
  • Social lives also suffered, with 75% missing social events and 63% spending less time with family and friends.

Despite these challenges, caregivers provided unwavering emotional support, with 84% offering consistent encouragement and care.

The Impact on Employment

One of the most surprising impacts, and one that caused unexpected (yet understandable stress), was the connection between the caregiver’s employment and their caregiving responsibilities for LR-MDS transfusion-dependent patients. 

  • Among employed caregivers, 56% missed at least one workday in three months, and 25% feared early retirement.
  • Work productivity dropped by an average of 38%, with impaired focus and frequent absenteeism contributing to this decline.

This data highlights how caregiving duties not only disrupt daily life but also place financial and professional strain on caregivers.

What This Means for Low-Risk MDS Patients and Caregivers

While transfusion dependence is often viewed through the lens of its impact on patients, this study underscores the significant and often overlooked burden on caregivers. Caregivers' sacrifices (whether in time, emotional well-being, or employment) are a testament to their commitment.

However, these findings also emphasize the need for change. Less burdensome treatment regimens and innovative therapies for MDS could reduce the frequency of transfusions and associated challenges. Such advancements would not only improve the lives of patients but also provide much-needed relief for caregivers.

Takeaways for Patients, Caregivers, and Healthcare Providers

For patients and caregivers, the study serves as a reminder to seek support. Whether it’s leaning on extended family, joining caregiver support groups, or asking your healthcare team about ways to reduce the impact of transfusion dependence, help is available.

For healthcare providers, these insights are a call to action. Treatment strategies must consider the broader impact on caregivers, ensuring that support is extended to them as part of the care plan. Addressing caregiver needs can improve the overall well-being of the patient-caregiver team.

MDS-related transfusion dependence doesn’t just affect patients—it reshapes the lives of their caregivers. 

To keep reading breaking MDS news and research, click here: HealthTree MDS News.

Source:

 

When we think about the challenges of living with transfusion dependence due to lower-risk myelodysplastic syndromes (LR-MDS), the focus is often on patients. Their time, health, and daily routines are undeniably disrupted. But there’s another group deeply affected by these challenges—the caregivers who shoulder the responsibilities of providing emotional, physical, and logistical support.

A recent study led by Maria Diez-Campelo, MD, PhD, and the Spanish MDS Team sheds light on caregivers' burdens. This team’s primary goal is to improve outcomes for MDS patients, but they also recognize that part of this goal includes supporting the patients’ loved ones.

Watch an interview with her here and/or continue reading for more information on this important subject.

A Closer Look at the Caregiver Burden

Caregiving for someone with LR-MDS who is dependent on red blood cell transfusions (RBCTs) is no small task. A cross-national survey involving caregivers from six countries, including the United States, Canada, and several European nations, revealed striking insights into the emotional, physical, and logistical toll caregiving takes.

Who Are These Caregivers?

  • Most caregivers in the survey (60%) were women, with an average age of 55 years.
  • Nearly half were spouses or partners, and 70% lived with the patient.
  • They reported their loved ones had an average of 6 RBCT visits over four months, translating to approximately 19 visits annually.

Time: A Constant Sacrifice

Caregivers reported spending over 93 hours per month assisting with tasks such as:

  • Accompanying patients to tranfusion visits, lab tests, and healthcare provider appointments.
  • Managing household duties, transportation, and medication pick-ups.
  • Dealing with insurance, billing, and scheduling-related tasks.

Frequent appointments and transfusions often dominated caregivers' schedules, leaving little time for themselves or their families.

Emotional and Social Strains

Caring for someone with LR-MDS goes beyond logistical support. Emotional and social strains are some of the most grueling when it comes to caregiving. 

  • 77% of caregivers said their emotional health was affected, with many feeling stress and worry about their loved one’s future.
  • Social lives also suffered, with 75% missing social events and 63% spending less time with family and friends.

Despite these challenges, caregivers provided unwavering emotional support, with 84% offering consistent encouragement and care.

The Impact on Employment

One of the most surprising impacts, and one that caused unexpected (yet understandable stress), was the connection between the caregiver’s employment and their caregiving responsibilities for LR-MDS transfusion-dependent patients. 

  • Among employed caregivers, 56% missed at least one workday in three months, and 25% feared early retirement.
  • Work productivity dropped by an average of 38%, with impaired focus and frequent absenteeism contributing to this decline.

This data highlights how caregiving duties not only disrupt daily life but also place financial and professional strain on caregivers.

What This Means for Low-Risk MDS Patients and Caregivers

While transfusion dependence is often viewed through the lens of its impact on patients, this study underscores the significant and often overlooked burden on caregivers. Caregivers' sacrifices (whether in time, emotional well-being, or employment) are a testament to their commitment.

However, these findings also emphasize the need for change. Less burdensome treatment regimens and innovative therapies for MDS could reduce the frequency of transfusions and associated challenges. Such advancements would not only improve the lives of patients but also provide much-needed relief for caregivers.

Takeaways for Patients, Caregivers, and Healthcare Providers

For patients and caregivers, the study serves as a reminder to seek support. Whether it’s leaning on extended family, joining caregiver support groups, or asking your healthcare team about ways to reduce the impact of transfusion dependence, help is available.

For healthcare providers, these insights are a call to action. Treatment strategies must consider the broader impact on caregivers, ensuring that support is extended to them as part of the care plan. Addressing caregiver needs can improve the overall well-being of the patient-caregiver team.

MDS-related transfusion dependence doesn’t just affect patients—it reshapes the lives of their caregivers. 

To keep reading breaking MDS news and research, click here: HealthTree MDS News.

Source:

 

The author Audrey Burton-Bethke

about the author
Audrey Burton-Bethke

Audrey is a content writer and editor for the HealthTree Foundation. She originally joined the HealthTree Foundation in 2020. Audrey loves spending time with her supportive husband, energetic four-year-old, and new baby. 

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