Knowledge, Motivations and Concerns about Participation in Breast Cancer Clinical Trials in Puerto Rico.

Abstract

Background: Clinical trials (CT) in breast cancer have been crucial for new treatment discoveries. While participation in cancer CT is low, minorities are particularly underrepresented. This study aimed to identify factors influencing the participation in CTs based on the experiences of Latina breast cancer survivors in Puerto Rico (PR), especially their CT knowledge, motivations, and concerns.

Method: Focus groups (FG) were conducted by two social workers and the University of Puerto Rico/MD Anderson Community Health Educator. Participants were stratified into two subgroups: a) women with CT experience and b) those without CT experience. Seven FG were completed among breast cancer survivors (n=34) at two hospitals located in Caguas and San Juan, PR.

Results: Our findings showed that participants expressed a basic knowledge and understanding of clinical trials. Motivations to participate included a desire to help others, non-monetary incentives to participation, self-benefits, readiness to participate based on the phases of illness, and enhanced relationships with the clinical trial recruitment team. Regardless of their previous experience with CTs, participants expressed concerns about participation including limited of knowledge about trial procedures and results, and lack of transportation, childcare, and support from family.

Recommendations: The barriers and motivations identified for CT participation are modifiable and best targeted using a multidisciplinary approach. Social workers could play a potential role in participant recruitment and retention by clarifying research protocols to potential participants, as well as conducting CT. Our findings can help enhance capacity and training efforts for health professionals involved in CT recruitment and retention in culturally-relevant ways.