How MDS Affects Life and Finances: The Role of Treatment, Sex, and Race

Recently, a study presented at the 66th ASH conference shed light on the unique challenges patients living with myelodysplastic syndrome (MDS) might face. These can impact every aspect of life, from health and well-being to financial stability. 

We had the opportunity to interview Dr. Somedeb Ball, the lead investigator and presenter of this study, and he discussed important insights of his research in a comprehensive way. 

In this article, we’ll cover the study highlights, which evaluate potential predictors of quality of life and financial toxicity in MDS, with particular reference to patients’ sex and race.

The findings can be divided by the factors studied: 

• MDS Characteristics and Treatment: Patients with higher-risk MDS reported lower quality-of-life scores than those with lower-risk disease. Intensive treatments, such as chemotherapy or stem cell transplantation, were associated with higher levels of physical and emotional distress.
• Sex Disparities: Women were at a disadvantage as they reported significantly worse quality of life compared to men, with higher levels of fatigue, anxiety, and depression. Women were also more likely to face barriers in accessing advanced treatments, contributing to feelings of inequality and distress.
• Race and Ethnic Disparities: Black, Hispanic, and Asian patients experienced greater financial toxicity, including higher out-of-pocket costs for care. They also had lower access to specialized care and clinical trials, potentially affecting their outcomes and survival rates.
• Financial Toxicity: Across all groups, this was a significant concern, with 58% of patients reporting moderate to severe financial strain. High treatment costs and missed workdays due to illness contributed to economic challenges for patients and their families.

What Does This Mean for Patients?

Studies like this are necessary for health professionals to consider social disparities to provide better care and support for their MDS patients. For patients, this qualitative study can contribute to self-advocacy, as it reminds us that every person is different and faces unique challenges. 

Here are some action steps that can help balance social disparities:

1. Discuss Your Concerns with Your Healthcare Team

• Talk openly about your symptoms, treatment side effects, and emotional well-being. Your healthcare team can adjust your care plan to better suit your needs.
• Ask about resources for managing financial toxicity, such as assistance programs or social workers who specialize in cancer care. You can also find more helpful resources here. 

2. Advocate for Yourself

• Request information on clinical trials, which often provide access to cutting-edge treatments and can reduce financial burdens.
• Share your concerns about disparities with your care team to ensure you receive equitable and personalized care.

3. Seek Support

• Join patient advocacy groups or online communities to connect with others facing similar challenges. You can join HealthTree’s community here. 
• Lean on support networks, including family, friends, and professional counselors, to help navigate emotional and financial stressors.

4. Raise Awareness of Disparities

• Share your story to shed light on the challenges faced by MDS patients, especially those in underserved populations.
• Participate in awareness campaigns and advocacy efforts to promote equal access to care and resources. 

Moving Forward

If you or a loved one is living with MDS, remember that you are not alone. Working closely with your healthcare team, seeking support, and raising awareness can help ensure better care for all. Together, we can address disparities and create a brighter future for MDS patients everywhere.

To keep learning more, you can read these articles, where we share updates from the latest medical conferences in a comprehensive, patient-focused language: 

• Patient Experience and Quality of Life Take Center Stage in MDS Research

• Expert Perspectives on Evolving MDS Treatment and Care

Sources:

• 532 A Prospective Evaluation of Impact of Disease, Treatment, Sex, and Race Disparities on Quality of Life and Financial Toxicity in Patients with Myelodysplastic Syndromes
• Quality of Life Dispairities for Patients with MDS