Cancer patients’ views on clinical research in Brazil: Concerns, knowledge, and misconceptions—A national survey.

Abstract

e23045 Background: Brazil’s participation in clinical research (CR) remains limited. Unawareness of CR benefits is a key barrier. Understanding patient perspectives is crucial for addressing these challenges. We conducted a national survey to explore cancer patients’ knowledge, fears, and misconceptions regarding CR, identifying factors that preclude their participation. Methods: This transversal observational study used a self-administered questionnaire comprising validated sociodemographic questions to explore the profiles, perceptions, and experiences with CR of cancer patients. The questionnaire included 14 demographic questions, 22 exploring knowledge and concerns about CR, and 7 specifically for CR participants to describe their experiences. Descriptive analysis was performed. Results: 290 participants answered the survey from Mar 23, 2024, to Nov 1, 2024. 44 were CR and 246 were non-CR, with a median age of 54 (44-65) years. 47 (16.6%) attended elementary school (ES), 110 (38.9%) had a high school and 122 (43.1%) had a university degree (UD). Of these, 186 (65.0%) were white, 22 (7.8%) were unemployed, and 137 (48.6%) were not engaged in paid work (retired, homemaker). The median gross monthly income was R$ 2,000.00 ([IQR]: R$ 675.00–R$ 4,000.00). 148 (54.4%) were covered by the public health system, and 124 (45.6%) had private health insurance. 195 (72.2 %) did not know the meaning of randomization; 123 (45.4%) never heard of an informed consent form (ICF). When questioned about their priorities before participating in CR, 68.3% prioritized receiving complete information about the advantages and disadvantages, 46.2% emphasized the importance of clear descriptions of participation requirements, and 55.2% valued beliefs in the study's potential to benefit future patients. The fear of being treated as a "guinea pig" (i.e., the perception of being subjected to research without full consent or awareness) was the most common concern, 81 (27.9%). 225 (90.7%) agreed that CR brings benefits for society and 197 (80.4%) would participate if invited. However, 112 (45.9%) believed that the risks outweigh the benefits. When comparing the answers by educational level, 8 (17.4%) participants with ES degree and 46 (39.0%) with UD answered that they knew the concept of randomization (p = 0.0011). Regarding risks and benefits of CR, 25 (59.6%) with ES and 44 (41.1%) with UD believed that the risks outweigh the benefits (p = 0.0024). Conclusions: While Brazilian cancer patients view CR positively, significant gaps in awareness of key concepts, such as randomization and ICF, persist. Fear of being treated as a "guinea pig" and concerns about risks outweighing benefits highlight the need for educational initiatives. Efforts by institutions like the CURA Institute and broader stakeholder engagement are vital for addressing these misconceptions, building trust, and enhancing CR participation in Brazil.