Patients’ and hematologists’ concerns regarding tyrosine kinase-inhibitor therapy in chronic myeloid leukemia

Purpose To explore patients’ and hematologists’ concerns regarding tyrosine kinaseinhibitor (TKI)-therapy and identify variables associated these concerns. Methods A cross-sectional questionnaire including 16 common issues related to TKI-therapy was distributed to adults with chronic myeloid leukemia (CML) receiving TKIs and hematologists treating CML patients and answered anonymously. Results Data from 1518 patient respondents receiving TKI-therapy ≥ 3 months were analyzed. 939 (62%) were male. Median age was 42 years. 72% were receiving imatinib. Median TKI-therapy duration was 27 months. Data from 259 hematologist respondents were analyzable. 154 (59%) treated > 5 persons with CML per month. Median number of concerns was 5 (range 0–16) for both patients and hematologists. The top five issues for both cohorts were new drug development, stopping TKI-therapy, TKI-reimbursement policies, TKI-related adverse effects and long-term efficacy of TKIs. 12 issues attracted proportionally discordant attention between patients and hematologists. Patients were more concerned with TKI-reimbursement policies, price reduction of TKIs, TKI-related adverse effects, restrictions to daily life, CML knowledge and interpretation of laboratory data, whereas hematologists were more concerned with stopping TKI-therapy, TKI choice, monitoring, TKI dose-adjustment, quality of generics and switching between branded and generic TKIs. In multivariate analyses female sex [OR = 1.4 (1.1–1.7); p = 0.008], education level ≥ bachelor e[OR = 1.8 (1.4–2.2); p < 0.001], TKI-therapy duration 36–< 60 months [OR = 1.4 (1.0–1.9); p = 0.049] and having adverse impact on daily life and work [OR = 1.5 (1.2–1.8]; p = 0.001] were associated with greater numbers of patients’ concerns. Conclusions Our data suggested hematologists need to be aware of CML patients’ concerns to improve their quality-of-life and patient-hematologist communication.