At the European Hematology Association (EHA) 2026 Congress, the CML Advocates Network (CMLAN) and Acute Leukemia Advocates Network (ALAN), together with international collaborators, presented new research exploring the quality-of-life burden experienced by people living with Chronic Myeloid Leukemia (CML).
The poster, “Emotional Distress Dominates Quality of Life Burden in CML: Psychometric Validation of Patient-Reported Outcomes in a Global Leukemia Experience Survey,” analyzed responses from 660 people living with CML who participated in the 2023 global leukemia experience survey. The study examined patient-reported outcomes using the validated Hematological Malignancy Patient-Reported Outcome (HM-PRO) instrument.
Emotional Well-Being Remains a Major Concern
While advances in treatment have transformed CML from a life-threatening disease into a manageable chronic condition for many patients, the study highlights that significant emotional and psychological challenges remain.
Among all quality-of-life domains assessed, emotional well-being was identified as the most affected area. Three out of four respondents reported moderate to extremely large emotional impacts on their daily lives. The most commonly reported concerns included:
- Worry about future health
- Anxiety and emotional distress
- Concerns about treatment and its long-term effects
- Changes in sleep patterns
- Difficulty concentrating
These findings demonstrate that living with CML extends beyond managing blood counts and treatment response. The emotional burden of a lifelong cancer diagnosis continues to affect many patients, even when clinical outcomes are favorable.
Fatigue Continues to Affect Daily Life
Although overall symptom burden was generally reported as low, fatigue-related symptoms remained highly prevalent. The survey found that:
- 83% of respondents experienced tiredness
- Nearly 75% reported reduced energy levels
- More than half experienced body pain or back pain
These symptoms can have a substantial impact on work, family life, social activities, and overall well-being.
Why Patient-Reported Outcomes Matter
The study also confirmed the strong reliability and validity of the HM-PRO instrument in people living with CML, supporting its use as a valuable tool for understanding patient experiences and identifying unmet needs.
The findings reinforce the importance of routinely assessing quality of life and emotional well-being as part of comprehensive CML care. Patient-centered care should not focus solely on clinical outcomes but also address the psychological and social challenges that many patients face throughout their treatment journey.
A Call for Holistic CML Care
The results presented at EHA 2026 underline the need for structured psychosocial support, regular quality-of-life assessments, and multidisciplinary approaches that place patient well-being at the center of care.
As treatment outcomes continue to improve, ensuring that people living with CML can also achieve the best possible quality of life must remain a priority.
We would like to thank all collaborators, co-authors, and especially the 660 patients who generously shared their experiences and made this important research possible. Their voices continue to help shape a better understanding of life with CML and guide improvements in patient-centered care worldwide.
