Abstract
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. Prospective cross-sectional study among CML patients registered with the Brazilian Lymphoma and Leukemia Association (ABRALE). CML patients receiving treatment through the public healthcare system were interviewed by telephone. 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. 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.
Highlights
Treatment of chronic myeloid leukemia (CML) used to include bone marrow transplantation, hydroxyurea and therapeutic regimens based on interferon-alpha (IFN-alpha)
Imatinib mesylate is a drug with proven efficacy for treating patients with CML and is indicated as firstline medication for patients with Philadelphia chromosome (Ph+) positive CML.[5,6]
We found that the majority of the patients lived in the southeastern region of Brazil, where the treatment of CML is still heavily concentrated
Summary
Treatment of chronic myeloid leukemia (CML) used to include bone marrow transplantation, hydroxyurea and therapeutic regimens based on interferon-alpha (IFN-alpha). About 10 years ago, imatinib mesylate, a derivative of phenyl-2-amino-pyrimidine that is a selective inhibitor of BCR-ABL tyrosine kinase, which induces hematological and cytogenetic remission in CML cases, became the treatment of choice.[1] The average age of 50 years among patients originally affected by CML (median of 60), as well as the lack of histocompatible donors and the early and late risks, limits the option of bone marrow transplantation to a minority of patients.[2,3,4] Imatinib mesylate is a drug with proven efficacy for treating patients with CML and is indicated as firstline medication for patients with Philadelphia chromosome (Ph+) positive CML (a chromosomal translocation associated with CML that is used in diagnosing the disease).[5,6] Today, secondgeneration tyrosine kinase inhibitors such as dasatinib and nilotinib have been shown to be efficacious as first-line therapy.[7,8,9,10] Every Brazilian citizen has the right to receive imatinib mesylate for treatment of CML, on a cost-free basis, provided by the government. No study has investigated the access to these treatments in Brazil yet
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