Only 14% of UK patients with advanced breast cancer (ABC) have been recruited to a clinical trial, according to a study presented at the virtual Advanced Breast Cancer Sixth International Consensus Conference (ABC 6).
The mixed methods study, which involved collaboration between patients and clinicians, launched an online survey May 17, 2021. The survey contained both closed and open questions. Descriptive statistical analysis of the quantitative results from the closed questions and thematic analysis of the qualitative data generated by the open-ended questions in the survey were applied.
As of August 23,627 responses had been received (626 female and 1 male). The median age of participants was 55 years; 45% were under 40. More than two-thirds (36%) had been diagnosed with de novo metastatic breast cancer.
Only 85 of 627 respondents (14%) had been recruited into a trial. More than 76% had never been approached regarding entry into a clinical trial. Almost 31% had inquired about trials and received a variety of responses. These varied from positive and supportive to "vague and dismissive."
When presented with open questions, patient responses included the following:
"Still waiting for a response. Talking to my oncologist is like shouting into a cave. All I get back is my own voice."
"I was told that I’d be informed if there was an appropriate trial."
"Oncologist very unsupportive. She said most trials fail and should only ever be a last resort."
"I wasn’t aware I could travel to another hospital to access a trial, I thought I would need to participate locally."
The study was led by breast cancer patient, Lesley Stephen. Commenting on the results, Ms Stephen said, "Clinicians act as gatekeepers and this study shows that they often don’t mention or discuss trials, and, if they do, they tend to look only for local trials and don’t ask their patients if they are willing and able to travel."
"They hold a lot of the power in the relationship and we need to encourage them to discuss trials as a treatment option with their patients. However, clinicians can’t do this alone; we need the pharmaceutical industry, which funds clinical trials, to work with us as well. We also need to educate patients about trials and empower them to be proactive and ask their oncologist about them."