Treatment Tolerability and Income: Exploring the Patient Experience in Hematologic Malignancies With Erica Fortune, PhD
Expert Perspectives · Keira Smith · 2024-12-20
At the 2024 American Society of Hematology (ASH) Annual Meeting, Cancer Support Community presented their study investigating treatment tolerability among patients with hematologic malignancies. This research sheds light on how income, emotional wellbeing, and access to care shape patient perceptions of treatment and quality of life. Following the meeting, Dr. Erica Fortune, Vice President of Research, sat down to share additional insights from the study.
Redefining Treatment Tolerability
Traditionally, treatment tolerability has been defined by physical impacts, such as adverse events. However, as Dr. Fortune explained, this perspective is incomplete: “We know that doesn’t fully encompass what the patient perspective is and how treatments might affect their quality of life.”
The Cancer Support Community team sought to expand this definition by including factors such as emotional wellbeing, treatment logistics, cost, and access to care. These considerations are essential for understanding the holistic patient experience.
Income-Related Differences in Treatment Perceptions
Analyzing data from the Cancer Experience Registry—a research survey capturing the physical, emotional, and financial impacts of cancer—the study included 118 individuals with various blood cancers, including myelodysplastic syndromes, non-Hodgkin lymphoma, and multiple myeloma. Notably, 20% of participants reported a household income of less than $40,000; 32% reported between $40,000 and $100,000; 28% reported $100,000 or more; and 20% preferred not to share.
Key findings include:
- Regardless of income, the top three priorities for treatment tolerability were slowing disease progression, managing side effects, and relieving symptoms
- Patients with lower income placed significantly higher importance on emotional wellbeing and treatment location (clinic versus home)
“The underlying story here is this is a health equity issue. Access to care, cost, and emotional impact all matter when considering treatment tolerability,” Dr. Fortune emphasized.
Addressing Emotional and Financial Barriers
The study highlights the critical need for integrated emotional and financial support services. “Supporting people emotionally should be part of standard care,” Dr. Fortune urged. “It should never be an add-on or an extra.”
For healthcare providers, this research underscores the importance of acknowledging patient concerns beyond physical health. Emotional wellbeing, treatment access, and affordability must be addressed as part of a comprehensive care plan.
Key Takeaways
- For patients: Your voice matters. Sharing your experiences helps shape better care and resources tailored to your needs
- For clinicians: Integrate emotional, financial, and logistical support into standard care to improve treatment tolerability
As Cancer Support Community’s research continues, understanding treatment tolerability across diverse cancer populations will remain a priority, fostering patient-centered care and health equity.
About Dr. Fortune
Erica Fortune, PhD, is the Vice President of Research at Cancer Support Community. She holds a PhD in Cognitive and Experimental Psychology from the University of Georgia and previously served as an Associate Professor of Psychology at Arcadia University. Dr. Fortune’s research focuses on cognition, decision-making, and risk-taking as part of the patient experience, as well as outcomes, disparities, and communication within healthcare settings. She has experience working with patients with cancer, HIV, and addictive disorders. At Cancer Support Community, she leads efforts in program evaluation and assesses the impact of their programming and support on individuals and communities.