Uncertainties About Clinical Trials Keep Patients From Enrolling

Medical oncologist Margaret Callahan is leading clinical trials at MSK that are studying immunotherapy treatments, which use the body’s own immune system to attack cancer.
Medical oncologist Margaret Callahan is leading clinical trials at MSK that are studying immunotherapy treatments, which use the body’s own immune system to attack cancer.

By Jennifer Castoro

Nearly every cancer treatment available today exists because of a clinical trial. At Memorial Sloan Kettering (MSK), more than 900 cancer clinical trials are currently under way. Most people are aware of how necessary these research studies are and how they can lead to lifesaving breakthroughs—but are nevertheless unlikely to participate in them. In fact, studies have shown that only four percent of all patients enroll in clinical trials for cancer each year.

According to a comprehensive survey of more than 2,000 Americans including nearly 600 doctors, conducted on behalf of MSK, just 40 percent said they have a positive overall impression of clinical trials, and only 35 percent said that they were likely to enroll in one.

These are sobering statistics given that the vast majority of advances in cancer research and treatment come as a result of clinical trials. In order to keep making progress toward ending the disease, these studies must continue and patients must enroll.

“When it comes to advancing cancer care, clinical research is the rocket fuel for better treatments, more accurate diagnoses and, ultimately, cures,” said MSK Physician-in-Chief José Baselga. “If this trend of low enrollment continues, we will face a crisis in cancer research and discovery. Further education is the key to participation and progress.”

The upside is that once the respondents in MSK’s survey were given more information about how clinical trials for cancer work, almost half said they would enroll. The challenge for healthcare professionals is to bust the myths and misconceptions surrounding cancer clinical trials and educate patients about how beneficial they can be—both for themselves and for future patients.

Lack of Knowledge Drives Low Enrollment

Study participants cited a range of concerns as barriers to participation in clinical trials, with worry about side effects (55 percent) and uncertainty about insurance and out of pocket costs (50 percent) topping the list. They also noted inconvenience of trial locations (48 percent), concerns about getting a placebo (46 percent), skepticism of the treatment (35 percent), and worries over feeling like a “guinea pig” (34 percent) as being potential reasons they wouldn’t participate in a trial.

Misconceptions Exist for Doctors, Too

Adding to the challenge of low enrollment is that healthcare professionals themselves often fail to discuss clinical trials with patients early enough in their treatment or to explain clearly to them what participation in a trial entails.

Education Can Increase Participation in Trials

Changing attitudes and increasing enrollment in cancer clinical trials primarily requires education for patients and doctors alike.

“I really did not have any awareness of clinical trials at all,” said Jennifer Carrieri, who participated in a cancer clinical trial for multiple myeloma as a patient of MSK medical oncologist Pamela Drullinsky. Once she received information about the trial and felt comfortable that she knew what was involved, Carrieri said, “I was very comfortable enrolling…there was nothing to be afraid of.”

Visit www.mskcc.org/cancer-care/clinical-trials/search to search MSK’s database of trials that are currently enrolling new participants. Also visit www.clinicaltrials.gov for more general information about clinical trials and how to find other trials being hosted by other companies and organizations.

—Jennifer Castoro writes for Memorial Sloan Kettering

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