Awareness, Support and Unmet Needs

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. 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
www.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.