Article Text
Abstract
Background Despite ongoing efforts, Black and Hispanic patients remain under-represented in cancer clinical trials. To inform the design of targeted interventions to improve underrepresented minority (URM) participation, we surveyed URM patients with cancer receiving care in a safety-net county hospital on their perspectives about clinical trials and barriers/facilitators of participation.
Methods Patients ≥ 18 years with histologically confirmed breast or colorectal cancer who received care at a county hospital in Houston, Texas were invited to participate. Participants completed a self-administered questionnaire which was developed in collaboration with the Department of Health Disparities Research using items from previously published/validated tools. The questionnaire included patient sociodemographic factors, perceptions about clinical trials, willingness to participate in different scenarios, and potential barriers and facilitators of participation. Surveys were available in English and Spanish. Descriptive analyses and standard tests of association were performed.
Results A total of 192 patients were invited to participate, 104 declined and 68 completed the survey. Most participants were < 65 years old (83.8%), Spanish-speaking (75%), Hispanic (82.1%), female (86.6%), diagnosed with breast cancer (72.1%), without a college degree (88%), and earning < $35,000 (88.1%). Among respondents, 20.6% reported prior cancer clinical trial participation. Prior trial participants reported understanding clinical research studies very well compared to those without previous trial participation (57.1% vs 26.4%, p=0.171). Prior participants were also more likely to have discussed clinical trial as an option (71.4% vs 28.3%, p<0.005) and 78.6% reported a positive experience with trial participation. The most common concerns among respondents were out of pocket costs (84.8%) and frequency of testing (72.3%). Most respondents noted that insurance/financial support (95.3%) and explanation about the study in their language (95.3%) would be very or extremely helpful in reducing participation burden. Most patients reported their doctor’s opinion as the most likely to influence their decision to participate a lot (85%) followed by the opinions of friends/family (57.6%) and prior trial participants (56.1%). Notably, 77.6% of participants were very or somewhat willing to participate in clinical trials as the first treatment for their cancer.
Conclusions In this underserved minority population, those who previously participated in a trial had greater understanding of clinical research studies. Most patients expressed willingness to participate in a trial as the first treatment for their cancer, but the cost of participation and frequency of testing were major concerns. Language assistance services and financial support are necessary to reduce the burden of clinical trial participation.
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