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

Posted: Dec 07, 2024
Patient Experience and Quality of Life Take Center Stage in MDS Research image

The first day of the 66th American Society of Hematology (ASH) Annual Meeting in San Diego marked a significant shift in blood cancer research, with an unprecedented focus on patient experiences in the real world and quality of life outcomes. This highlights the growing recognition that patient voices and self-reported outcomes are crucial in advancing MDS care.

This article provides an overview of Day 1's key MDS sessions, highlighting significant developments reshaping our understanding of patient care. In the coming weeks, we'll be publishing detailed analyses of these groundbreaking presentations, featuring exclusive interviews with the researchers and experts behind these studies. Stay tuned!

Quality of Life and Palliative Care: A New Priority

A groundbreaking multi-site randomized trial demonstrated that integrating palliative care with oncology care significantly improved the quality of life for patients with AML and high-risk MDS receiving non-intensive therapy. The study showed meaningful improvements in end-of-life care preferences documentation and reduced hospitalization rates, suggesting a new standard for comprehensive care approaches.

Understanding the Broader Impact: Caregiver Perspectives

In a first-of-its-kind international study, researchers examined the impact of transfusion dependence on caregivers across North America and Europe. The findings revealed significant effects on caregivers' time, employment, and well-being, emphasizing the need for less burdensome treatment regimens that could benefit both patients and their support networks.

Patient-Reported Outcomes: Reshaping Prognostic Tools

Several studies presented compelling evidence for incorporating patient-reported outcomes into clinical decision-making:

  • Self-reported fatigue severity emerged as an independent prognostic indicator for survival in both lower and higher-risk MDS patients

  • A large-scale analysis of 3,349 patients provided crucial insights into the quality of life patterns at diagnosis

  • The innovative MyPal study demonstrated how digital health tools can enhance palliative care delivery and quality of life monitoring

Advancing Treatment Approaches in Low-Risk MDS

The conference featured extensive discussions on optimizing treatments for lower-risk MDS, including:

  • New data on early versus late intervention with erythropoiesis-stimulating agents (ESA) 

  • Promising updates from the COMMANDS trial comparing luspatercept with epoetin alfa

  • Innovative combination approaches for patients who don't respond to initial treatments, including the combination of ESA with luspatercept in non-RS MDS patients (COMBOLA study) and new data on imetelstat in transfusion-dependent patients who failed ESA therapy

Looking Forward

We are thrilled to see how patient experiences and outcomes are increasingly recognized as essential components of treatment success. At HealthTree, we are working hard to bridge the gap between researchers, physicians, and patients to make sure that your voices and needs are heard.

Stay informed about the latest developments from ASH 2024 and beyond by subscribing to our newsletter. Visit our News site for in-depth coverage and expert interviews from the conference.

Subscribe to MDS Newsletter

The first day of the 66th American Society of Hematology (ASH) Annual Meeting in San Diego marked a significant shift in blood cancer research, with an unprecedented focus on patient experiences in the real world and quality of life outcomes. This highlights the growing recognition that patient voices and self-reported outcomes are crucial in advancing MDS care.

This article provides an overview of Day 1's key MDS sessions, highlighting significant developments reshaping our understanding of patient care. In the coming weeks, we'll be publishing detailed analyses of these groundbreaking presentations, featuring exclusive interviews with the researchers and experts behind these studies. Stay tuned!

Quality of Life and Palliative Care: A New Priority

A groundbreaking multi-site randomized trial demonstrated that integrating palliative care with oncology care significantly improved the quality of life for patients with AML and high-risk MDS receiving non-intensive therapy. The study showed meaningful improvements in end-of-life care preferences documentation and reduced hospitalization rates, suggesting a new standard for comprehensive care approaches.

Understanding the Broader Impact: Caregiver Perspectives

In a first-of-its-kind international study, researchers examined the impact of transfusion dependence on caregivers across North America and Europe. The findings revealed significant effects on caregivers' time, employment, and well-being, emphasizing the need for less burdensome treatment regimens that could benefit both patients and their support networks.

Patient-Reported Outcomes: Reshaping Prognostic Tools

Several studies presented compelling evidence for incorporating patient-reported outcomes into clinical decision-making:

  • Self-reported fatigue severity emerged as an independent prognostic indicator for survival in both lower and higher-risk MDS patients

  • A large-scale analysis of 3,349 patients provided crucial insights into the quality of life patterns at diagnosis

  • The innovative MyPal study demonstrated how digital health tools can enhance palliative care delivery and quality of life monitoring

Advancing Treatment Approaches in Low-Risk MDS

The conference featured extensive discussions on optimizing treatments for lower-risk MDS, including:

  • New data on early versus late intervention with erythropoiesis-stimulating agents (ESA) 

  • Promising updates from the COMMANDS trial comparing luspatercept with epoetin alfa

  • Innovative combination approaches for patients who don't respond to initial treatments, including the combination of ESA with luspatercept in non-RS MDS patients (COMBOLA study) and new data on imetelstat in transfusion-dependent patients who failed ESA therapy

Looking Forward

We are thrilled to see how patient experiences and outcomes are increasingly recognized as essential components of treatment success. At HealthTree, we are working hard to bridge the gap between researchers, physicians, and patients to make sure that your voices and needs are heard.

Stay informed about the latest developments from ASH 2024 and beyond by subscribing to our newsletter. Visit our News site for in-depth coverage and expert interviews from the conference.

Subscribe to MDS Newsletter

The author Marta Llobet Canela

about the author
Marta Llobet Canela

Marta believes that too many people still struggle to understand how our bodies work, making a cancer diagnosis even more overwhelming. With 10 years of experience in blood cancer, she transforms complex medical language into clear, accessible information, empowering patients to confidently advocate for themselves and participate in meaningful research at HealthTree. She loves exploring New York and always says yes to trying a new restaurant!

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