Beyond Hemoglobin: The Rising Focus on Quality of Life in Lower-Risk MDS Treatment
For years, the primary metric for success in treating lower-risk Myelodysplastic Syndromes (MDS) has been increasing hemoglobin levels and reducing the need for transfusions. But a growing body of evidence, highlighted in recent research presented at the European Hematology Association 2025 Congress, suggests a critical shift is underway: treatment efficacy must be redefined to prioritize a patient’s overall health-related quality of life. This isn’t simply about feeling ‘better’ – it’s about reclaiming normalcy, emotional wellbeing, and a future unburdened by the limitations of the disease.
The Limitations of Traditional Metrics
Traditionally, improved overall survival has been a difficult goal to achieve in the relapsed/refractory setting of lower-risk MDS. As Dr. María Díez Campelo of the University Hospital of Salamanca explains, the focus is shifting to what *can* be improved. “We have to convey that this treatment is beneficial for the patient, because they are going to feel better, do more activities, and [it will] have a positive effect on the emotional, physical, and psychological settings,” she stated in a recent interview. This represents a fundamental change in how clinicians and patients alike view treatment success.
Bridging the Gap Between Doctor and Patient
This shift requires a more nuanced conversation between doctors and patients. It’s no longer enough to simply report lab values; physicians need to actively assess and address the impact of MDS – and its treatment – on a patient’s daily life. This includes understanding their ability to participate in activities they enjoy, manage their emotional state, and maintain a sense of independence. A recent article in the National Cancer Institute’s website emphasizes the importance of patient-reported outcomes in cancer care, a concept directly applicable to MDS management.
The Need for Better Measurement Tools
However, accurately measuring ‘quality of life’ remains a significant challenge. Dr. Díez Campelo points out that current tools are “still ongoing and need to be improved.” The difficulty lies in separating the benefits experienced by patients responding to treatment from those who are not. More sensitive and specific measures are needed to truly capture the impact of therapies like imetelstat, as explored in the IMerge trial, on a patient’s wellbeing.
Focusing on the Responders
Future research should prioritize a deeper understanding of the benefits experienced by patients who respond positively to treatment. What specific aspects of their quality of life improve? How can these improvements be maximized? Identifying these factors will be crucial for tailoring treatment plans and optimizing patient outcomes. This requires moving beyond generic questionnaires and incorporating more personalized assessments.
The Overlooked Impact on Caregivers
A critical, often overlooked, aspect of MDS care is the burden placed on caregivers. Patients frequently require assistance with appointments, medication management, and daily tasks. Dr. Díez Campelo rightly emphasizes the need to assess the impact of treatment on caregivers as well. “Sometimes the patient’s feelings are related to the caregiver’s needs,” she notes. Supporting caregivers is not merely a matter of compassion; it’s an integral part of holistic patient care. Ignoring caregiver wellbeing can negatively impact both the patient and the overall treatment experience.
The future of MDS treatment isn’t just about extending life; it’s about enhancing the quality of that life – for both patients and those who support them. As research continues to refine our understanding of quality of life metrics and the impact of new therapies, we can expect to see a more patient-centered approach to MDS management emerge, one that prioritizes wellbeing alongside traditional measures of efficacy. What are your thoughts on the evolving role of quality of life in MDS treatment? Share your perspective in the comments below!
