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

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.

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Publication Details

Journal
Journal of Clinical Oncology
Published
2025-05-28
DOI
https://doi.org/10.1200/jco.2025.43.16_suppl.e23045
Citations
1
Primary Topic
Palliative Care and End-of-Life Issues
Type
article
Field-Weighted Citation Impact
1.88
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article

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

Sabina B. Aleixo, Rachel Jorge Dino Cossetti Leal, Lilian Arruda De Rêgo Barros, José Bines et al.
1 citations
Journal of Clinical Oncology
Palliative Care and End-of-Life Issues
1.88
article

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

Sabina B. Aleixo, Rachel Jorge Dino Cossetti Leal, Lilian Arruda De Rêgo Barros, José Bines, Eldsamira Mascarenhas, Poliana Albuquerque Signorini, Cristina de Deus Anjos Tavares Sampaio, Jose Marcio Barros Figueiredo, Heloísa Resende, Regina Costa de Oliveira, ANA Caroline Zimmer Gelatti, Graziela Dal Molin, Andréa Lopes Ponte de Souza, Cristiano de Pádua Souza, Fernanda Damian, Carlos H. Barrios, Luis Eduardo Werneck De Carvalho, Fernanda Schwyter, Giuliano Santos Borges, Tainá Cabalheiro
article en
1 citations

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.

Journal of Clinical OncologyVol. 43(16_suppl)
Instituto Nacional de Pesquisas da Amazônia (BR), Hospital de Câncer de Barretos (BR), São Camilo Hospital (BR), D’Or Institute for Research and Education (BR), Instituto de Medicina Integral Professor Fernando Figueira (BR), Beneficência Portuguesa de São Paulo (BR), Santa Casa de Misericórdia de Passos (BR), Instituto do Cérebro de Brasília (BR), Hospital Infantil Joana de Gusmão (BR), Hospital São Lucas da PUCRS (BR), Instituto Nacional de Câncer - INCA (BR), Universidade do Vale do Itajaí (BR), Centro de Pesquisas Oncológicas (BR)
Openalex Percentile: Top 15%
Palliative Care and End-of-Life Issues
1.88
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