Seven years ago, Phyllis DeAngelis was given three to six months to live. Her lung cancer had spread, unhindered by radiation treatment, and her doctors felt that there was nothing else they could do. But they did suggest that she might want to participate in a clinical trial. After deciding she had nothing to lose, DeAngelis enrolled in a randomized trial--one that would ultimately define the role of taxol-based treatments, which have since become part of the standard cancer treatment repertoire. She is one of the lucky ones. Results of a new survey reveal that most cancer patients don't realize that participation in a clinical trial is a treatment option. Indeed, 84 percent of nearly 6,000 cancer patients surveyed reported that they were not informed or did not understand that they could participate in a clinical trial. Of that 84 percent, 75 percent said they would have been willing to enroll in one had they known it was a possibility. Of the 16 percent of patients who were aware of the clinical trial option, 75 percent decided against it, worrying that they would receive treatment less effective than the standard, that they would receive a placebo or that they would be treated like a guinea pig.
These findings contrast sharply with the reports from patients who did enroll in clinical trials--97 percent of whom said that they received high quality care and were treated with respect. And 75 percent of the participants said they would recommend this option to others. "Most patients simply do not know about clinical trials that could help them," observes Robert Comis,president of theCoalition of National Cancer Cooperative Groups, which conducts clinical trials for the National Cancer Institute."Clinical trials represent the very best care we have to offer for many cancer patients, yet many do not take advantage of the opportunity because of lack of awareness or misconceptions of what a clinical trial really is." Fear of receiving a placebo is one such misconception. However, placebos are extremely rare in cancer treatment clinical trials," Comis explains. Rather, patients are randomly assigned to either the control group, in which they receive the standard therapy, or the test group, in which the new treatment is given. Similarly, patients who chose not to enroll in a clinical trial cited concerns about insurance not covering costs, and fear that their out-of-pocket costs would increase. Yet 86 percent of participants said that they ultimately obtained coverage.
In the end, such low clinical trial enrollment--only 3 to 5 percent of all cancer patients--slows the development of new treatments, says Ellen Stovall of the National Coalition for Cancer Survivorship. "There are many ways to access information about clinical trials," offers Linda Krebs, past president of the Oncology Nursing Society. "Ask your doctor, your nurse and explore the Internet. And once you find a clinical trial that may be appropriate, continue to ask questions of the health professionals to find out what you can expect from the trial itself."