Patients' perceptions about diagnosis and treatment of chronic myeloid leukemia: a cross-sectional study among Brazilian patients.
OBJECTIVE
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.


METHODS
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.
Bone Marrow Transplantation Unit, Hospital Israelita Albert Einstein, São Paulo, Brazil.
Nelson
N
Hamerschlak
Internal Medicine, Universidade Estadual de Campinas (Unicamp), São Paulo, Brazil.
Carmino de
Cd
Souza
Instituto de Tratamento do Câncer Infantil, São Paulo, Brazil.
Ana Lúcia
AL
Cornacchioni
Internal Medicine, Universidade Federal do Paraná, São Paulo, Brazil.
Ricardo
R
Pasquini
Centro de Tratamento Oncológico, São Paulo, Brazil.
Daniel
D
Tabak
Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil.
Nelson
N
Spector
Associação Brasileira de Linfoma e Leucemia, São Paulo, Brazil.
Merula
M
Steagall
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000970:Antineoplastic Agents / Q000627:therapeutic use; D001938:Brazil; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006297:Health Services Accessibility; D006801:Humans; D000068877:Imatinib Mesylate / Q000627:therapeutic use; D015464:Leukemia, Myelogenous, Chronic, BCR-ABL Positive / Q000175:diagnosis* / Q000235:genetics / Q000628:therapy*; D008297:Male; D055118:Medication Adherence; D008875:Middle Aged; D010465:Perception; D010677:Philadelphia Chromosome; D011446:Prospective Studies; D012959:Socioeconomic Factors; D018709:Statistics, Nonparametric; D013997:Time Factors; D055815:Young Adult
D000970:Antineoplastic Agents; D000068877:Imatinib Mesylate