Patient-Versus Physician-Perceptions of Symptoms, Treatment and Management in Chronic Myeloid Leukemia

Background Chronic myeloid leukemia (CML) is a chronic disease with treatment-free remission (TFR) increasingly regarded as a feasible goal of treatment. The optimal outcome achieved in CML requires both prolonged adherence to oral tyrosine kinase inhibitor (TKI) therapy by patients and careful monitoring of treatment responses by their physicians. Various factors would impact doctors following international guidelines for CML management in real-word, however, very few studies has investigated possible discrepancies between patient- and physician-reporting in the CML setting.

Objective To compare the reporting of care between CML patients and their treating doctors, and to explore the underlying causes for both physicians and patients non-adherence.

Methods Parallel patient and physician online surveys were conducted between September 22, 2021 and March 15, 2022, using the WeChat-based survey program Wenjuanxing. Descriptive analysis of the results mainly focused on CML adults patients and physicians treating CML regarding TKI treatment options, monitoring and toxicities, TFR, and facing challenges.

Results A total of 1882 patients and 305 physicians completed the survey. Among the enrolled patients, 69.9% received imatinib as first-line therapy, of them 47.0% switched to other TKIs due to imatinib resistance/intolerance (58.5%), exploration on more potent TKI to achieve TFR (13.1%), and treating physicians’ recommendation (15.8%). 91.8% of the physicians believed BCR-ABL1 level should be assessed every 3 months, however, only 42.7% patient respondents committed to 3-monthly testing and 17.8% strictly followed their treating physicians’ recommendation. Half of the patients (49.9%) aimed at TFR, however, just 45.2% physicians considered TFR as one of the three major treatment objectives, obstacles to achieve TFR mainly attributed to their patients. Fatigue and anemia were the key negative impactors for patients who were significantly associated with higher incidence of mental disorders, whilst physicians paid more attention to platelet and neutrophil count. Incidence of moderate to severe anxiety or depression is 12.0% and 20.8%, respectively; but only 41.3% of patients needed support from their doctors, and 53.7% physicians provided their patients with additional support. 13.7% patients had delayed follow-up visit and molecular monitoring, 7.4% patients discontinued TKI or reduced TKI dose due to economic difficulties (69.2%), which resulted in 10.2% patients suffering from disease progression amid the COVID-19 pandemic. 42.3% patients were vaccinated for SARS-CoV-2, another 57.7% patients against vaccine because of safety concern. Cost is the major impactor for treatment choices, molecular monitoring, treatment objective, mental health, and even the treatment under the pandemic, which were fully recognized by both the patients and physicians.

Conclusions Physicians who joined our survey had low awareness on patients’ fatigue and anemia. Mental disorders existed in a significant proportion of patients, whereas less concerned by both patients and physicians. Cost is the major impactor for physician and patient adherence to current clinical practice guidelines, especially under current COVID-19 pandemic in China.