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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.
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Unmet needs remain in later lines chronic myeloid leukemia (CML): the response rate and the overall survival of resistant patients in the chronic phase who changed a second-generation TKI in the second line with another TKI with similar action are usually poor, while the off-target toxicities and the potential development of mutations increase. The recent approval of asciminib, a STAMP inhibitor, in the third line, has the potential to soon change the therapeutic algorithm for this subset of patients. Here, we report the results of a GIMEMA survey assessing the number of patients currently treated in the third line in Italy, the current approach in later lines by Italian physicians, and the future role of this drug according to the reason to switch to asciminib (resistance and/or intolerance), as well as the perceptions about the future position of this agent.
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PURPOSE: To evaluate chronic myeloid leukemia (CML) patients' adherence to peroral tyrosine kinase inhibitors in Finland and to compare this with adherence as estimated by their physicians. Other aspects studied included how patients' knowledge of the disease and its treatment influence adherence. MATERIALS AND METHODS: A total of 120 CML patients were contacted between June 2012 and September 2013 in eight secondary or tertiary care hospitals in Finland. Of these, 86 participated in the study. This covers approximately 20% of all Finnish CML patients. The mean age was 57.8 years and 52% were male. Of the patients, 79.1% were using imatinib, 10.5% dasatinib, and 10.5% nilotinib. The patient-reported adherence (experienced adherence) was evaluated using the eight-item Morisky Medication Adherence Scale (MMAS). In addition, the treating physicians were asked to give their subjective opinion on their patients' adherence (observed adherence). The experienced adherence was compared with the observed adherence using a three-level rating system (high, medium, low). All patients were personally interviewed and their demographic data collected. The statistical analysis of the data was based on descriptive statistics presented as frequencies, percentages, means, and medians. The kappa coefficient was calculated between the patient's and the doctor's assessment of adherence. RESULTS: A total of 23% (20/86) of the patients were fully adherent according to the MMAS, while physicians evaluated 94% (80/86) of the patients as fully adherent. The physicians' estimate was too optimistic in 73% of cases. The discrepancy was confirmed by a kappa value of -0.004. The patients' knowledge of the disease and its treatment was poor in all adherence levels. CONCLUSION: The patient-reported adherence to tyrosine kinase inhibitor treatments in Finland was found to be the same as that found in the majority of previous studies. However, there seems to be a very weak agreement between the patient's and the physician's assessment of adherence. This study suggests that physicians overestimate the adherence of CML patients and base their assessment primarily on the clinical treatment response.