What question did this study set out to answer?

This research aims to evaluate the experiences and needs of patients with chronic myeloid leukemia and their physicians regarding treatment decisions.

February 2, 2026Open Access

Understanding disease management and the patient journey in chronic myeloid leukemia: results from the CML SUN survey in South Korean patients and physicians

Key Points

This research aims to evaluate the experiences and needs of patients with chronic myeloid leukemia and their physicians regarding treatment decisions.
Online surveys conducted with patients aged 18 and older receiving second-line or later tyrosine kinase inhibitors.
Separate surveys for patients and hematologists addressing diagnosis, treatment, and quality of life.
Data collected from 40 patients and 10 physicians in South Korea.
Patients prioritized quality of life and disease progression management, while physicians focused on molecular responses.
Over half of physicians made treatment decisions with minimal patient input.
A significant percentage of patients felt their quality of life was impacted by their treatment options.

Abstract

Background: Quality of life (QoL) is of paramount importance in the management of patients with chronic myeloid leukemia (CML), as most patients receive lifelong treatment. Despite this, information on patient experiences and involvement in treatment decision making is lacking. Objectives: The global Chronic Myeloid Leukemia Survey on Unmet Needs (CML SUN) evaluated the unmet needs and concerns of patients diagnosed with CML in chronic phase (CP) and their treating physicians. Here, we present the results of the CML SUN survey from respondents in South Korea. Design and methods: Patients with CML-CP (aged ⩾18 years; receiving a second- or later-line tyrosine kinase inhibitor TKI) and hematologists (treated ⩾10 patients with CML-CP over the last year) were invited to complete an online survey. Separate surveys were used for patients and physicians, with both covering CML diagnosis, treatment, impact on everyday life, and shared decision making. Results: Forty patients and ten physicians in South Korea completed the surveys. Patients’ top treatment goals were maintaining QoL and stopping or slowing down disease progression, while physicians emphasized achievement of molecular responses. More than half of physicians reported making treatment decisions with little or no input from their patients. Between 17% and 31% of patients reported that their physician only described one treatment for them. Although most patients were satisfied with their current treatment, a significant proportion believed it impacted their QoL. The top factors for patients when considering a treatment switch were maintaining QoL and living normally, while physicians again focused on achieving molecular responses. Conclusion: The results highlight the significant impact of ATP-competitive TKIs on patients’ QoL and provide useful insights into CML treatment in South Korea. The differences in patient and physician perspectives emphasize the need for shared treatment decisions that balance efficacy and tolerability to enhance QoL and to minimize unnecessary treatment switching.

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