Barriers to participation in clinical trials: cross-sectional study on perceptions of oncology patient advocacy group webpage in Brazil

ABSTRACT

Introduction: Clinical trials (CT) represent an important alternative treatment for oncologic patients. Also, CTs represent an essential step to development of improved therapeutic strategies. However, little is known on Brazilian perception regarding CT. The aim of this survey was to describe the overall perception of CT in Brazilian participants of oncology patient advocacy group. Design and setting: Cross-sectional survey conducted online through patient advocacy group website. Methods: From April 2012 to October 2014, 254 respondents answered an internet-based survey related to knowledge on CT from an independent nonprofit oncology patient advocacy group. Results: Overall, about 85% of respondents stated they would participate in an oncology trial. Of all respondents, 99.9% believe that CTs can contribute positively to advancement of cancer treatment by increasing the scientific knowledge, improving the treatment, finding a cure, providing a new treatment option, or improving the quality of life. Also, 96% affirmed they have already had some information on CT, being internet the most used form of communication (69%), followed by physicians orientation (8%), magazines and newspaper (8%), and hospital handout material (7%). In addition, only 18 respondents reported previously participation in CTs (6.9%), and approximately 10% answered they knew someone that participated in a CT (e.g. friend or other). Conclusions: This survey demonstrated that respondents associate CT as an option in cancer treatment; however, only a small number of respondents have participated in a CT previously. The data indicate the lack of available information as the current major barrier to CT participation in Brazil.

RESUMO

Introdução: Os ensaios clínicos (EC) representam uma alternativa importante no tratamento de pacientes oncológicos Além disso, ECs representam um passo essencial para o desenvolvimento de estratégias terapêuticas aprimoradas. No entanto, pouco se sabe sobre a percepção dos brasileiros em relação ao EC. O objetivo desta pesquisa foi descrever a percepção geral do EC em participantes brasileiros do grupo de defesa à pacientes oncológicos. Tipo de estudo e local: Pesquisa transversal realizada on-line através de um site do grupo de defesa à pacientes. Métodos: De abril de 2012 a outubro de 2014, 254 entrevistados responderam a uma pesquisa na Internet de uma organização independente sem fins lucrativos de defesa à pacientes oncológicos, relacionada ao conhecimento sobre EC. Resultados: No geral, cerca de 85% dos entrevistados afirmaram que participariam de um estudo oncológico. De todos os entrevistados, 99.9% acreditam que ECs podem contribuir positivamente no avanço do tratamento do câncer, aumentando o conhecimento científico, melhorando o tratamento, encontrando uma cura, proporcionando uma nova opção de tratamento ou melhorando a qualidade de vida. Além disso, 96% afirmaram que já possuíam alguma informação sobre EC, sendo a Internet a forma de comunicação mais utilizada (69%), seguida de orientação médica (8%), revistas e jornais (8%) e folheto em hospital (7%). Além disso, apenas 18 entrevistados relataram participação prévia em ECs (6.9%) e, aproximadamente 10%, responderam conhecer alguém que participou de um EC (por exemplo, amigo ou outro). Conclusão: Esta pesquisa demonstrou que os entrevistados associam EC como uma opção no tratamento do câncer; no entanto, apenas um pequeno número de entrevistados participou anteriormente de um EC. Os dados indicam a falta de informação disponível como a maior barreira atual à participação de EC no Brasil.

Keywords:

Clinical trial - Patient advocacy - Awareness - Physician-Patient relations - Health surveys.

Descritores:

Ensaio clínico - Defesa do paciente - Conscientização - Relações médico-paciente - Pesquisas de saúde.

AUTHOR'S CONTRIBUTION

Guilherme Silva Julian: Conception and design, Data analysis and interpretation, Final approval of manuscript, Manuscript writing.

Christiane Bueno: Data analysis and interpretation, Final approval of manuscript, Manuscript writing.

Renata Eiras Martins: Final approval of manuscript, Manuscript writing.

Luciana Holz Camargo de-Barros: Data analysis and interpretation, Final approval of manuscript, Manuscript writing, Provision of study materials or patient.

Publication History

Received: 22 February 2019

Accepted: 04 July 2019

Article published online:
10 September 2019

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