How Transfusions Can Impact Quality of Life for Myelofibrosis Patients

Myelofibrosis (MF) is a complex disease that can lead to low blood cell counts, with low red blood cells (anemia) being the most common. Many patients depend on transfusions that help maintain a certain level of circulating red blood cells.

While transfusions can temporarily relieve symptoms, they come with several risks, such as allergic reactions, metabolic imbalances (such as iron overload), and infections.

Although these risks are known, more insight into what patients go through in their daily lives is available. That’s why, at the 66th annual ASH conference, Dr. Thomas LeBlanc presented an intriguing poster with research on how patients report the impact of transfusions on their quality of life. 

In this article, we’ll cover the details of the results for you. 

Beyond Transfusions: What Really Matters to Patients

This survey, conducted between October 2023 and February 2024, included 155 participants from six countries: the United States, the United Kingdom, Germany, Italy, Spain, and Poland. The average participant age was 59, and 56% were male. 88% of participants were diagnosed with anemia. Participants were grouped by transfusion status:

• 49% were transfusion-dependent: the need for frequent transfusions
• 33% were transfusion-independent: occasionally need for transfusions
• 18% were transfusion-naive: never received transfusions

Most people, whether diagnosed with anemia or not, reported symptoms such as fatigue and weakness, which negatively affected various aspects of their lives:

• 73% struggled with daily activities
• 56% experienced limitations in physical activities
• 54% reported difficulties with thinking and concentration
• 53% felt their emotional health was impacted

Addressing anemia was a high priority.  81% of anemic patients and 63% of non-anemic patients considered it “extremely” or “quite a bit” important.

Burden of Transfusions

Frequent transfusions were viewed as a significant burden by more than half of the patients participating in this survey, regardless of their transfusion status. The most common concerns included:

• Negative effects on daily activities (56%) and emotional health (52%).
• Feelings of inconvenience (59%), mainly due to time spent at the clinic (81%), travel to and from appointments (40%), and scheduling challenges (32%).

For transfusion-dependent patients: 62% spent more than 3 hours at the clinic per visit and 78% traveled more than 20 minutes each way to the clinic.

Looking Forward to Receiving Less Transfusions

According to the survey’s results, reducing transfusions improved the emotional health, social life, and physical activities in nearly 50% of patients. 

Notably, daily activities and family responsibilities were ranked as the most important improvements. Patients expressed a strong preference for reducing the frequency of transfusions:

• 80% wanted transfusions reduced to once every 16 weeks.
• 74% believed never needing transfusions was “extremely” or “quite a bit” important.

Final Thoughts

This study reveals the profound impact of anemia and transfusion dependence on the lives of people with myelofibrosis. Frequent transfusions disrupt daily routines, strain emotional health, and serve as a reminder of disease progression.

As a result, patients highly value treatments that alleviate anemia symptoms and reduce or eliminate the need for transfusions.

These findings emphasize the importance of developing therapies that can improve anemia management, decrease transfusion frequency, and ultimately enhance the quality of life for myelofibrosis patients.

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Source: 

• Experienced or Perceived Burdens and Associated Quality of Life Impacts of Anemia and Transfusion Dependence in Myelofibrosis: A Patient Self-Report Survey Analysis