CONTEXT AND OBJECTIVES: Chronic myeloid leukemia (CML) requires strict daily compliance with oral medication and regular blood and bone marrow control tests. The objective was to evaluate CML patients’ perceptions about the disease, their access to information regarding the diagnosis, monitoring and treatment, adverse effects and associations of these variables with patients’ demographics, region and healthcare access. DESIGN AND SETTING: Prospective cross-sectional study among CML patients registered with the Brazilian Lymphoma and Leukemia Association (ABRALE). METHODS: CML patients receiving treatment through the public healthcare system were interviewed by telephone. RESULTS: Among 1,102 patients interviewed, the symptoms most frequently leading them to seek medical care were weakness or fatigue. One third were diagnosed by means of routine tests. The time that elapsed between first symptoms and seeking medical care was 42.28 ± 154.21 days. Most patients had been tested at least once for Philadelphia chromosome, but 43.2% did not know the results. 64.8% had had polymerase chain reaction testing for the BCR/ABL gene every three months. 47% believed that CML could be controlled, but 33.1% believed that there was no treatment. About 24% reported occasionally stopping their medication. Imatinib was associated with nausea, cramps and muscle pain. Self-reported treatment adherence was significantly associated with normalized blood count, and positively associated with imatinib. CONCLUSIONS: There is a lack of information or understanding about disease monitoring tools among Brazilian CML patients; they are diagnosed quickly and have good access to treatment. Correct comprehension of CML control tools is impaired in Brazilian patients. © 2015, Associacao Paulista de Medicina. All rights reserved.1336471479Dobbin, J.A., Gadelha, M.I.P., Imatinib Mesylate in the treatment of chronic myelogenous leukemia (2002) Rev Bras Cancerol, 48 (3), pp. 429-438Saussele, S., Lauseker, M., Gratwohl, A., Allogeneic hematopoietic stem cell transplantation (allo SCT) for chronic myeloid leukemia in the imatinib era: Evaluation of its impact within a subgroup of the randomized German CML Study IV (2010) Blood, 115 (10), pp. 1880-1885Lee, S.J., Kukreja, M., Wang, T., Impact of prior imatinib mesylate on the outcome of hematopoietic cell transplantation for chronic myeloid leukemia Blood, 112 (8), pp. 3500-3507Dowling, M., Meenaghan, T., Kelly, M., Treating chronic myeloid leukaemia: NICE guidance Br J Nurs, 21 (4), pp. S16-S17Iacobucci, I., Rosti, G., Amabile, M., Comparison between patients with Philadelphia-positive chronic phase chronic myeloid leukemia who obtained a complete cytogenetic response within 1 year of imatinib therapy and those who achieved such a response after 12 months of treatment (2006) J Clin Oncol, 24 (3), pp. 454-459Quintás-Cardama, A., Kantarjian, H., Jones, D., Delayed achievement of cytogenetic and molecular response is associated with increased risk of progression among patients with chronic myeloid leukemia in early chronic phase receiving high-dose or standard-dose imatinib therapy (2009) Blood, 113 (25), pp. 6315-6321Saglio, G., Kim, D.W., Issaragrisil, S., Nilotinib versus imatinib for newly diagnosed chronic myeloid leukemia (2010) N Engl J Med, 362 (24), pp. 2251-2259Kantarjian, H., Shah, N.P., Hochhaus, A., Dasatinib versus imatinib in newly diagnosed chronic-phase chronic myeloid leukemia (2010) N Engl J Med, 362 (24), pp. 2260-2270Kantarjian, H., Shah, N.P., Hochhaus, A., Dasatinib compared to imatinib (IM) in patients (pts) with newly diagnosed chronic-phase chronic myelogenous leukemia in chronic phase (CML-CP): Twelve-month efficacy and safety from the phase III DASISION study (2010) Journal of Clinical Oncology, 28 (18). , http://meeting.ascopubs.org/cgi/content/abstract/28/18_suppl/LBA6500, Accessed in 2014 (Jan 6)Larson, R.A., le Coutre, P.D., Reiffers, J., Comparison of nilotinib and imatinib in patients (pts) with newly diagnosed chronic myeloid leukemia in chronic phase (CML-CP): ENESTnd beyond one year (2010) Journal of Clinical Oncology, 28 (15), p. 6501. , http://meeting.ascopubs.org/cgi/content/abstract/28/15_suppl/6501?sid=cc66024f-f235-40e9-afd0-ad641a4cc986, Accessed in 2014 (Jan 6)Farsi, Z., Nayeri, N.D., Negarandeh, R., The coping process in adults with acute leukemia undergoing hematopoietic stem cell transplantation (2012) J Nurs Res, 20 (2), pp. 99-109Grant, M., Cooke, L., Williams, A.C., Functional status and health-related quality of life among allogeneic transplant patients at hospital discharge: A comparison of sociodemographic, disease, and treatment characteristics (2012) Support Care Cancer, 20 (11), pp. 2697-2704Holloway, S., Lord, K., Bethelmie-Bryan, B., Managing chronic myeloid leukemia: A coordinated team care perspective (2012) Clin Lymphoma Myeloma Leuk, 12 (2), pp. 88-93Efficace, F., Cocks, K., Breccia, M., Time for a new era in the evaluation of targeted therapies for patients with chronic myeloid leukemia: Inclusion of quality of life and other patient-reported outcomes (2012) Crit Rev Oncol Hematol, 81 (2), pp. 123-135Pellegrino, E.D., Is truth telling to the patient a cultural artifact? (1992) JAMA, 268 (13), pp. 1734-1735Faria, S.L., Souhami, L., Communication with the cancer patient. Information and truth in Brazil (1997) Ann N Y Acad Sci, 809, pp. 163-171Gulinelli, A., Aisawa, R.K., Konno, S.N., Desire of information and participation in therapeutic decisions concerning severe diseases, in patients of a University Hospital (2004) Rev Assoc Med Bras (1992), 50 (1), pp. 41-47Rigatos, G.A., Cancer and truth-telling in Greece. Historical, statistical, and clinical data (1997) Ann N Y Acad Sci, 809, pp. 383-392Hall, J.A., Roter, D.L., Katz, N.R., Meta-analysis of correlates of provider behavior in medical encounters (1988) Med Care, 26 (7), pp. 657-675Da Silva, C.H., Cunha, R.L., Tonaco, R.B., Not telling the truth in the patient-physician relationship (2003) Bioethics, 17 (5-6), pp. 417-424Suchman, A.L., Matthews, D.A., What makes the patient-doctor relationship therapeutic? Exploring the connexional dimension of medical care (1988) Ann Intern Med, 108 (1), pp. 125-130Hamerschlak, N., Pietrocola, M., Tabak, D., Treatment of accelerated (AP) and blastic phase (BP) of Philadelphia (Ph) chromosome positive chronic myeloid leukemia (CML) with imatinib (2003) Proc Am Soc Clin Oncol, , abstr 2479Sawyers, C.L., Chronic myeloid leukemia (1999) N Engl J Med, 340 (17), pp. 1330-1340Ganesan, P., Sagar, T.G., Dubashi, B., Nonadherence to imatinib adversely affects event free survival in chronic phase chronic myeloid leukemia (2011) Am J Hematol, 86 (6), pp. 471-474Ganesan, P., Sagar, T.G., Dubashi, B., Nonadherence to imatinib adversely affects event free survival in chronic phase chronic myeloid leukemia (2011) Am J Hematol, 86 (6), pp. 471-474Marin, D., Bazeos, A., Mahon, F.X., Adherence is the critical factor for achieving molecular responses in patients with chronic myeloid leukemia who achieve complete cytogenetic responses on imatinib (2010) J Clin Oncol, 28 (14), pp. 2381-2388de Almeida, M.H., Pagnano, K.B., Vigorito, A.C., Lorand-Metze, I., de Souza, C.A., Adherence to tyrosine kinase inhibitor therapy for chronic myeloid leukemia: A Brazilian single-center cohort (2013) Acta Haematol, 130 (1), pp. 16-22Noens, L., van Lierde, M.A., De Bock, R., Prevalence, determinants, and outcomes of nonadherence to imatinib therapy in patients with chronic myeloid leukemia: The ADAGIO study (2009) Blood, 113 (22), pp. 5401-5411Guérin, A., Chen, L., Dea, K., Wu, E.Q., Goldberg, S.L., Association between regular molecular monitoring and tyrosine kinase inhibitor therapy adherence in chronic myelogenous leukemia in the chronic phase (2014) Curr Med Res Opin, 30 (7), pp. 1345-1352Wu, E.Q., Johnson, S., Beaulieu, N., Healthcare resource utilization and costs associated with non-adherence to imatinib treatment in chronic myeloid leukemia patients (2010) Curr Med Res Opin, 26 (1), pp. 61-69Titier, K., Picard, S., Ducint, D., Quantification of imatinib in human plasma by high-performance liquid chromatography-tandem mass spectrometry (2005) Ther Drug Monit, 27 (5), pp. 634-640Darkow, T., Henk, H.J., Thomas, S.K., Treatment interruptions and non-adherence with imatinib and associated healthcare costs: A retrospective analysis among managed care patients with chronic myelogenous leukaemia (2007) Pharmacoeconomics, 25 (6), pp. 481-496Daouphars, M., Ouvry, M., Lenain, P., Preliminary validation of self-assessment tool to measure imatinib adherence in patients with chronic myeloid leukemia (2013) Pharmacotherapy, 33 (2), pp. 152-156Koren-Michowitz, M., Volchek, Y., Naparstek, E., Imatinib plasma trough levels in chronic myeloid leukaemia: Results of a multicentre study CSTI571AIL11TGLIVEC (2012) Hematol Oncol, 30 (4), pp. 200-205Cortes, J., De Souza, C., Ayala-Sanchez, M., Current patient management of chronic myeloid leukemia in Latin America: A study by the Latin American Leukemia Net (LALNET) (2010) Cancer, 116 (21), pp. 4991-5000Weingart, S.N., Spencer, J., Buia, S., Medication safety of five oral chemotherapies: A proactive risk assessment (2011) J Oncol Pract, 7 (1), pp. 2-6Efficace, F., Baccarani, M., Rosti, G., Investigating factors associated with adherence behaviour in patients with chronic myeloid leukemia: An observational patient-centered outcome study (2012) Br J Cancer, 107 (6), pp. 904-909Jönsson, S., Olsson, B., Söderberg, J., Wadenvik, H., Good adherence to imatinib therapy among patients with chronic myeloid leukemia--a single-center observational study (2012) Ann Hematol, 91 (5), pp. 679-685Chen, L.C., Chen, T.C., Huang, Y.B., Chang, C.S., Disease acceptance and adherence to imatinib in Taiwanese chronic myeloid leukaemia outpatients (2014) Int J Clin Pharm, 36 (1), pp. 120-127Eliasson, L., Clifford, S., Barber, N., Marin, D., Exploring chronic myeloid leukemia patients' reasons for not adhering to the oral anticancer drug imatinib as prescribed (2011) Leuk Res, 35 (5), pp. 626-630