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PATIENT PERSPECTIVES Clinical Trial Experiences of Prostate Cancer Patients
By: Joel T. Nowak, MA, MSW; Wendy A. Lebowitz, PhD, MPH | Posted on: 01 May 2022
Introduction and Objectives
Clinical trials (CTs) are vital to advancing treatments. The more patients we accrue into trials, the faster we advance our knowledge. Patients must be treated ethically when recruited for trials, with access to clear materials and information. At Cancer ABCs, we have heard from patients that they have not been told about trials, or understood that they were being offered a trial instead of, or in addition to, the standard of care (SOC). We believe patients should understand that when offered trials, there might also be appropriate SOC options, and vice versa.
Methods
We surveyed men on the Cancer ABCs prostate cancer mailing list. We asked if they had been invited to participate in a CT, and if they were offered a trial, was it presented clearly as such, with alternative SOC options offered?
Results
We received 66 responses: 90% identified as Caucasian, 4.55% as African American, 1.52% as Hispanic and 3.03% as other. Most respondents had advanced or locally advanced prostate cancer as indicated by the treatment they had undergone: 51% had had 3 or more different treatments, and 18.18% reported having had 2 or more. Treatments were received across settings: 41.5% were treated at an academic institution, 43.08% in a private doctor’s office, 13.85% in a community hospital and 1.54% at a Veterans Affairs facility. Respondents were treated by a medical oncologist (56.06%), urologist (34.85%) or other. Only 33.33% were offered a CT, of whom 50% understood it was a trial when first presented. Of those offered a trial, 42.2% understood they were being offered a trial, 12.12% thought they were being offered SOC and 45.5% were offered a choice between a trial and SOC.
Conclusions
Not enough patients are offered a CT. Of the patients, 12.12% did not understand that they were offered a CT as opposed to the SOC. All patients should be offered a choice between a CT or the SOC. We need to establish and support CT infrastructure in local communities, minority communities and nonacademic institutions. CT protocol development must be sensitive to demands made on patients.
Additional Discussion
Clinicians need to offer CTs and need to make it clear that there might be either alternative trials or treatments. Clinicians need to use plain language about CTs and treatment options. Clinicians or staff must meet patients at their level and engage in conversations with patients about sensitive items like side effects. Infrastructure support for CTs in both community and academic settings needs to be supportive of the patient. Patients need to understand the CT and receive support for participation (parking, day care, reasonable expectations of patient time).