Purpose: To ascertain the experiences and perceptions of participation in cancer clinical trials by Hispanic and Black cancer survivors.
Methods: As part of a larger study to develop a decision aid for participation in cancer clinical trials, we conducted semi-structured interviews with English-speaking Hispanic (15), Spanish-speaking Hispanic (15), and Black (15) cancer survivors. We employed quantitative content analysis to code responses to 16 specific questions based on transcripts from the interviews. These questions included: whether the participant had been asked to be in a clinical trial or discussed it with a health care provider; if they would be willing to participate in a clinical trial in the future, and if it would be helpful to hear the experiences of others, particularly of their own race/ethnicity, about participating in a clinical trial.
Results: The average age of participants was 56.0 (SD 10.6) years; 93.3% were female, with most having had breast cancer (66.7%). Years since diagnosis ranged from 1-16, with an average of 3.3 (SD 3.0). Only 4 had been asked to participate in a clinical trial, and of these, 3 had joined a trial. Although only 4 had talked with a provider about participating, 23 (54.8%) wished that such a conversation had happened. In addition, 32 (71.1%) said that they would be willing to participate in a trial, and another 8 (17.8%) said that they may be willing. Almost all, 97.8%, said that it would be helpful to hear other cancer patients’ experiences with clinical trials. However, most (81.8%) stated that it would not make any difference if the people relaying the experiences were of the participant’s own race/ethnicity. Rather, information from someone with their own type of cancer was viewed as more important by 36%.
Conclusions: Although few participants had even talked about clinical trials with their health care providers, most cancer survivors expressed willingness to participate and thought that hearing the experiences of others would be valuable. These findings highlight the need for physicians to discuss trials with patients, and for patients to raise the topic of clinical trials with their physician. Increasing cancer patients’ knowledge and self-efficacy to discuss clinical trials with healthcare providers, for example through a decision aid, may lead to a much needed increase in participation rates.
See more of: The 33rd Annual Meeting of the Society for Medical Decision Making