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Advocacy Patient Group in Oncology


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Awareness, Support and Unmet Needs

Published in: Government & Nonprofit
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Advocacy Patient Group in Oncology

  1. 1. INTRODUCTION • 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 live better. • The present analysis can contribute to develop an awareness campaign besides advocate to cancer patient needs. METHODS • 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). OBJECTIVE 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 RESULTS 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%) (Figure 1) 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). PATIENTS 905 PATIENTSʼ RELATIVES 827 HEALTHCARE PROFESSIONALS 42 LAYMAN 47 STUDENTS 05 INSTITUTIONS 14 UNDEFINED 19 Figure 1. PAP USERS PROFILE ON 2013 AND 2014 (N=1,859 PERSONS) PCN131
  2. 2. CONCLUSIONS These results reflect that social rights and access treatment are an unmet need for cancer patients, reinforcing the importance of patientsʼ groups orientations. To improve population and patientsʼ awareness, educational campaigns (governmental or not) are warranted. HEALTH 24% PATIENTʼS RIGHTS 76% EXAM ACCESS 16% PHYSICIAN ACCESS 18% OTHERS TREATMENTS ACCESS 66% OTHER TREATMENTACCESS INJECTABLE CHEMOTHERAPYACCESS RADIOTHERAPYACCESS SURGERYACCESS ORAL CHEMOTHERAPY ACCESS 67% 14% 8% 7%4% SOCIAL RIGHTS 79% ACCESS 21% Figure 2. PAP ORIENTATIONS PROFILE IN 2013 FIGURE 3. PAP ORIENTATIONS PROFILE IN 2014 INJECTABLE CHEMOTHERAPYACCESSRADIOTHERAPYACCESS HORMONE THERAPY ACCESSORAL CHEMOTHERAPY ACCESS 36% OTHER TREATMENT ACCESS 25% 1% SURGERY ACCESS 21% 8%9% HEALTH 18% PATIENTʼS RIGHTS 82% SOCIAL RIGHTS 70% ACCESS 30% OTHER TREATMENT ACCESS 56% EXAM ACCESS 17% PHYSICIAN ACCESS 27% Two hundred and eight patients answered a satisfaction question regarding PAP program. Among this respondents, more than 85% were described that PAP program totally met expectations or was above the expectations. (Figure 5) In 2013 and 2014, most of the orientations were related to breast, prostate and colorectal cancer (Figure 4). POSTER PRESENTED AT THE ISPOR 20TH ANNUAL INTERNATIONAL CONGRESS 16-20 MAY, 2015 PHILADELPHIA, PA, USA © COPYRIGHT 2015 INSTITUTO ONCOGUIA Alameda Lorena, 131, Conj. 116 Jardim Paulista São Paulo, SP - 01424-001 - Brasil +55-11-3053-6917 - E-mail: INSTITUTOONCOGUIA@ONCOGUIA.ORG.BR RENAL CANCER THYROID CANCER COLORECTAL CANCER PROSTATE CANCER DID NOT KNOW BREAST CANCER FIGURE 4. PROFILE OF PAP ORIENTATIONS RELATED TO DIFFERENT CANCER TYPES IN 2013 AND 2014. 52.7% 50.9% 22.1% 16.3% 15.3% 13.3% 9.7% 4.5% 3.7% 2013 (N=686) 2014 (N=711) 11.1% DID NOT ANSWER - 9 HARDLY CORRESPONDED - 5 REASONABLY CORRESPONDED - 21 OVERCAME MY EXPECTATIONS - 93 TOTALLY CORRESPONDED - 120 HOW PAP PROGRAM ATTENDED YOUR EXPECTATIONS? FIGURE 5. RESPONDENTSʼ SATISFACTION ON PAP ACCORDING TO THEIR EXPECTATIONS.