• Advocacy Patientsʼ groups play an important role in the oncology field.
• Understanding oncologic patientsʼ needs may improve prevention, early detection, quality-of-life
and legal rights, reducing the burden of the disease.
• Few studies, however, have focused on the needs of this specific population in Brazil.
• National Program of support and counseling for cancer patients (PAP) is a counseling program
dedicated to cancer patients and maintained by Oncoguia Institute.
• Since its creation, in 2012, PAP program helped more than 5,965 persons by telephone and
e-mail, focusing in social rights, access problems and quality of life.
• Oncoguia is an independent non-profit institution, with the mission of helping cancer patients to
• The present analysis can contribute to develop an awareness campaign besides advocate to
cancer patient needs.
• We analyzed the PAP program database of telephone orientations from 01/2013 to 12/2014.
• We retrieved and described the applicantsʼ profiles (patient, family, specialty society, physicians,
etc) and type of required information (patient rights, related to health/quality of life or access to
diagnostic or treatment procedures).
To identify and describe the main needs of cancer patients according to Oncoguia database.
ADVOCACY PATIENT GROUP IN ONCOLOGY:
AWARENESS, SUPPORT AND UNMET NEEDS
Holtz, L1; Minowa, E2; Julian, GS2
1. Instituto Oncoguia, São Paulo, Brazil; 2 - Evidências Credibilidade Científica - Kantar Health, São Paulo, Brazil
In the mentioned period, 1,859 people were orientated by PAP program, totalizing 3,114 orientations.
Among the oriented people, the massive majority were oncologic patients (49%) or relatives (44%)
In both years, the majority of the orientations were regarding patientsʼ rights, of which the most
frequent was social rights followed by access. Regarding access, the majority of orientations were on
other treatments, followed by access to physicians and access to exams. The majority of orientations
given on other treatments were to oral chemotherapy access (67% in 2013 and 36% in 2014), surgery
access (14% in 2013 and 21% in 2014), radiotherapy access (8% in 2013 and 9% in 2014), access to
intravenous chemotherapy (7% in 2013 and 8% in 2014) and to other treatments (25% in 2014)
(Figures 2 and 3).
Figure 1. PAP USERS PROFILE ON 2013 AND 2014 (N=1,859 PERSONS)