MSK Survey Indicates Misbelief Responsible for Dismal Cancer Trial Participation

A survey conducted by MaPS/Millward Brown Analytics, on behalf of Memorial Sloan Kettering Cancer Center (MSK), has identified multiple concerns of American consumers with cancer clinical trial participation, which could be responsible for the dismal 4% national enrollment rate in clinical trials.

The survey was conducted across the country among 1511 consumers, between 18 and 69 years old, and 594 practicing physicians who have discussed clinical trials with their patients. Physicians were specialists in oncology/hematology, OB / GYN, gastroenterology, urology, ear/nose/throat medicine, neurology, pulmonology, or dermatology. Of the surveyed individuals, only 35% indicated that they’d be willing to enroll themselves in a trial, and less than half (40%) of those surveyed seemed to have an overall positive impression of clinical trials.

These results corroborate findings of a study published late last year by 5 other cancer centers in the country: Robert Lurie Comprehensive Cancer Center at Northwestern University, Cleveland Clinic Foundation, Fox Chase Cancer Center, and Karmanos Cancer Institute at Wayne State University. The survey found that 21% of 1255 cancer patients chose to participate in clinical trials—much greater than the 4-5% trial participation that is typically observed. The high numbers in this particular study were the result of patient education on clinical trials (PRE-ACT). The study, which was published in the Journal of Clinical Oncology (JCO), found that the knowledge and attitude of patients in the PRE-ACT greatly improved, and it crumpled the barrier to participation.

Clinical trials are the stepping stone for drug discovery, and increased trial participation can have a tremendous impact on brining newer and better drugs to the market. The primary concerns with trial participation, noted by the survey participants, were:

• Worry over side effects / safety (55%)
• Uncertainty about insurance and out-of-pocket costs (50%)
• Inconvenience of trial locations (48%)
• Concerns about getting a placebo (46%)
• Skeptical of a treatment that is not yet proven to work (35%)
• Worries over feeling like “guinea pigs” (34%)

However, similar to the JCO study, attitudes changed following a bit of education on what clinical trials are and how they are conducted: 60% of those surveyed said they’d be open to enrolling in a trial, up from the initial 40%.

José Baselga, MD, PhD, physician-in-chief and CMO at MSK, reacted to the results of the survey by saying, “When it comes to advancing cancer care, clinical research is the rocket fuel for better treatments, more accurate diagnoses, and, ultimately, cures. 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.”

Surprisingly, surveyed physicians too seemed to have inhibitions regarding enrolling their patients in a trial: 53% expressed concern that individuals would not want to feel like guinea pigs.

“While concerns regarding clinical trials are understandable, it is critical that the cancer community address common myths and misunderstandings around issues like effectiveness, safety, use of placebo, and at which point in treatment a trial should be considered,” said Paul Sabbatini, MD, deputy physician-in-chief for Clinical Research at MSK. “For example, the vast majority of clinical trials do not involve a placebo.”

Community support could play a significant role in washing away some of these misconceptions. In an interview with The American Journal of Managed Care, Kim Thiboldeaux, chief executive officer of the Cancer Support Community, explained the important role that patient advocates can play in this process. “From our standpoint and the patient advocacy community, we believe that we need to do some use basic education, that we need to train patients, we need to get them the information about clinical trials as a starting point so that they can think about a clinical trial as a treatment option when they are diagnosed with cancer and not something that is a last-ditch effort or something that they would only have access to when everything else has failed,” she said.