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. 2024 Mar;12(1):131-145.
doi: 10.1007/s40487-023-00255-2. Epub 2023 Dec 16.

Patient Versus Physician Perspective in the Management of Chronic Myeloid Leukemia During Treatment with Tyrosine Kinase Inhibitors

Hong Chen #  1 , Yan Wen #  2 , Yun Zeng #  3 , Lie Lin #  4 , Bihong Sun  5 , Hongqian Zhu  6 , Huiqing He  7 , Xiaotao Wang  8 , Waiyi Zou  9 , Caifeng Zheng  10 , Liling Zheng  11 , Jinxiong Huang  12 , Liping Pang  13 , Jixian Huang  14 , Yuming Zhang  15 , Haiqing Lin  16 , Zelin Liu  17 , Wanshou Zhu  18 , Qiang Wang  1 , Xuan Zhou  1 , Xiaoli Liu  1 , Hong Qu  19 , Zhenfang Liu  20 , Xin Du  21 , Na Xu  22
Affiliations

Patient Versus Physician Perspective in the Management of Chronic Myeloid Leukemia During Treatment with Tyrosine Kinase Inhibitors

Hong Chen et al. Oncol Ther. 2024 Mar.

Abstract

Introduction: Chronic myeloid leukemia (CML) is a chronic disease with treatment-free remission (TFR) increasingly regarded as a feasible goal of treatment. However, various factors may influence adherence to international guidelines for CML management. This study aimed to compare the reporting of care between patients with CML and their treating doctors.

Methods: Parallel patient and physician online surveys were conducted between September 22, 2021, and March 15, 2022, which focused on the perceptions of 1882 adult patients with CML and 305 physicians regarding tyrosine kinase inhibitor (TKI) treatment options, monitoring and toxicities, TFR, and challenges faced.

Results: Among the enrolled patients, 69.9% received first-line imatinib treatment, 18.6% received nilotinib, and 4.7% received dasatinib. Among the patients treated with imatinib, 36.7% switched to other TKIs due to imatinib resistance/intolerance (71.1%), exploration of more potent TKIs to achieve TFR (8.9%), and treating physicians' recommendation (14.0%), with a median duration of initial treatment of 14 months [interquartile range (IQR) 6-36]. Most (91.8%) physicians agreed that the breakpoint cluster region-Abelson 1 (BCR::ABL1) transcript level should be assessed every 3 months, but only 42.7% of individuals committed to 3-monthly testing and only 17.8% strictly followed their treating physicians' recommendation. Half of the patients aimed for TFR; however, just 45.2% of physicians considered TFR as one of the top three goals for their patients. The major concern in obtaining TFR was patients' adherence. Fatigue was often distressing for patients with TKIs, while physicians were more concerned about platelet and neutrophil counts. A total of 12% and 20.8% of patients reported moderate/severe anxiety and depression, respectively, while only 53.7% of physicians had concerns about their patients' mental health. During the coronavirus disease 2019 (COVID-19) pandemic, 69.2% of patients reported a reduction in their income. Among these patients, 61.8% maintained their current treatment, while 7.3% switched to cheaper alternatives or discontinued treatment, with over 80% of these patients belonging to the low-income group.

Conclusions: Overcoming challenges in patient-physician communication and treatment access is key to improving disease management and quality of life, especially for patients with low income.

Trial registration: ClinicalTrials.gov identifier NCT05092048.

Keywords: Chronic myeloid leukemia; Discrepancies; Patient; Physician; Quality of life.

PubMed Disclaimer

Conflict of interest statement

Hong Chen, Yan Wen, Yun Zeng, Lie Lin, Bihong Sun, Hongqian Zhu, Huiqing He, Xiaotao Wang, Waiyi Zou, Caifeng Zheng, Liling Zheng, Jinxiong Huang, Liping Pang, Jixian Huang, Yuming Zhang, Haiqing Lin, Zelin Liu, Wanshou Zhu, Qiang Wang, Xuan Zhou, Xiaoli Liu, Hong Qu, Zhenfang Liu, Xin Du and Na Xu have nothing to disclose.

Figures

Fig. 1
Fig. 1
Physician versus patient respondents reporting disease monitoring frequency: 92.5% of the physicians’ (N = 305) ideal BCR::ABL1 testing frequency was every 3 months; among them, only 83.2% achieved this in clinical practice, while only 42.7% of patient respondents adhered to 3-monthly testing, and only 17.8% strictly followed their treating physicians’ recommendations. BCR::ABL1 breakpoint cluster region–Abelson 1
Fig. 2
Fig. 2
Treatment expectations in 305 physician respondents by number of years treating CML, among the above six potential treatment objectives. Most physicians considered DMR, OS, and EMR as the top three important treatment objectives. CML chronic myeloid leukemia; AP accelerated phase; BC blast crisis; DMR deep molecular response; EMR early molecular response; TFR treatment-free remission; OS overall survival; QoL quality of life
Fig. 3
Fig. 3
Percent of AEs reported by patients (N = 1882) and physicians (N = 305) that had the most negative influence on QoL with regard to TKI therapy. A Most patients stated that anemia among the HAEs had the most negative influence on their QoL; B Most patients stated that fatigue among the non-HAEs had the most negative influence on their QoL; C Most physicians noted that thrombocytopenia and neutropenia among the HAEs had the most negative influence on their patients' QoL; D Most physicians noted that rash and pruritus, edema, digestive symptoms, and pleural effusion among the non-HAEs had the most negative influence on their patients' QoL. AEs adverse events; HAEs hematological adverse events; QoL quality of life; TKI tyrosine kinase inhibitor
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