PATIENTS' GROUPS AND ADVOCACY IN ONCOLOGY- AWARENESS, SUPPORT AND UNMET NEEDS

Author(s)

Holtz L1, Minowa E2, Julian G3
1Oncoguia, São Paulo, Brazil, 2Evidências - Kantar Health, Campinas, Brazil, 3Evidências - Kantar Health, São Paulo, Brazil

OBJECTIVES: Patients’ groups and advocacy play an important role in the oncology field. Understanding oncologic patients’ 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. The present analysis can contribute to develop an awareness campaign besides advocate to cancer patient needs. Our objective was to identify and describe the main needs of cancer patients in Brazil. METHODS: We analyzed the PAP program database from 01/2013 to 08/2014. This is a support and personalized counseling program dedicated to cancer patients and maintained by Oncoguia Institute, an independent nonprofit institution. We retrieved and described the applicants’ 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). RESULTS: In the aforementioned period, 2,214 applicants received 2,586 orientations (1,683 by telephone and 903 by electronic mail). Forty-nine percent of the requests were made by the patients, 45% by a family member and 2% by health care professionals. Among all requests, 77% were regarding patient´s rights and 23% were questions on health information. The 1,640 requests on patient rights were divided as follows: social rights (82%), problems related to access to treatments (10%), exams (3%) or physicians (3%). CONCLUSIONS: Our analysis showed that the demand for clarification regarding social rights and access to treatment reflect an unmet need for cancer patients and campaigns expanding the awareness of the population are warranted.

Conference/Value in Health Info

2015-05, ISPOR 2015, Philadelphia, PA, USA

Value in Health, Vol. 18, No. 3 (May 2015)

Code

PCN131

Topic

Health Policy & Regulatory, Organizational Practices, Patient-Centered Research, Real World Data & Information Systems

Topic Subcategory

Academic & Educational, Health & Insurance Records Systems, Health Disparities & Equity, Patient Behavior and Incentives

Disease

Oncology

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