Abstract
Introduction
With an estimated population of over 193 million habitants, Brazil is considered the fifth largest and most populated country in the world. Although recent advances in economy, Brazil still suffers from structural deficiencies, including health care assistance. ABRALE, Brazilian Leukemia and Lymphoma Patient Association, have played a major role in helping patients with oncohematological malignancies, including weekly web-based chats with specialists, educational material and legal advice.
Methods
At enrollment, patients are asked to answer a web-based questionnaire, for demographic evaluations and policy planning. In this questionnaire, patients detail about ther diagnosis, time of symptoms, first medical visit, date of treatment and type of treatment. Patients also detail about health insurance coverage.
Objectives
To present data collected by a web-based questionnaire filled by patients at the time of enrollment in ABRALE.
Results
From 2008 to 2009, a total of 1455 patients answered the questionnaire, 53,4% female and 46,6% male patients. Diagnosis were: Hodgkin’s lymphoma (HL) in 36,6%, Non-Hodgkin’s lymphoma (NHL) in 61,65% and 2% of patients didn’t have this information. For NHL, 57,08% did not know the specific subtype of lymphoma. The majority of patients searched for medical attention due to enlarged lymph nodes (65,64%) and only 15,53% had incidental diagnosis. Time from symptoms to first medical appointment was >1 month in 67,9%, and time to first specialist appointment after diagnosis was >2 months in 53,54%. After diagnosis, about half of patients (51,72%) waited more than one month to start treatment. Overall, time from symptoms to treatment was over 3 months in 70,59% of patients. The vast majority of patients had no information about lymphoma (86,05%) prior to diagnosis.
In this cohort, 63,51% had no medical insurance and were treated in public hospitals by the Brazilian Health System (SUS). Only a minority of patients were treated with Rituximab (23,64% of total patients, 38,35% of patients with NHL). Access to rituximab was granted in 81,11% of patients by private medical assistance, legal actions or research protocols (1,74%). Only 18,60% of patients with indication for rituximab received it by the Brazilian Health system.
Conclusions
In this study, we observed a high proportion of patients without basic information (e.g, subtype) regarding their diagnosis. Moreover, 86% of patients had no information about the disease prior to diagnosis. A better patient and population education is mandatory. Time from symptoms to treatment was >3 months in 70% of patients, reflecting both delays due to information and possible health assistance delays. Rituximab was used in the minority of patients (38% of NHL patients), mostly by private ensures or legal actions. From this data, future policies to assist Brazilian lymphoma patients could be drawn, such as patient and population information and encouragement to research enrollment. Moreover, a national campaign conducted by ABRALE led to the recent discussion for approval of rituximab in CD20+ follicular lymphomas in patients treated on SUS.
Disclosures:
No relevant conflicts of interest to declare.
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