Joining a clinical trial is too hard for many cancer patients

(Reuters Health) - Only a small fraction of cancer patients volunteer for clinical trials. The reason, a new study suggests, is not that they don’t want to, but that the system makes it too hard.

“The reason most patients don’t go into clinical trials is not because of the patient, but because of all the barriers in front of the patient, including structural and clinical factors,” said the study’s lead author, Joseph Unger, a health services researcher and biostatistician at the Fred Hutchinson Cancer Research Center in Seattle.

“Most patients receive care in a community cancer care setting and those types of sites are not nearly as often oriented to research as large academic centers. So often there is no trial available for the patient,” Unger said.

Surveys have shown that as many as 50 percent of eligible cancer patients say they would participate in a clinical trial, but the new study found just eight percent had signed on for one.

Unger’s research team combed through the medical literature looking for studies that examined the question of why more patients weren’t participating in clinical trials.

They ultimately settled on 13 studies that spanned 15 years and included a total of 8,883 patients.

For 55.6 percent of patients in the study, no trial was available at their institution, according to the report in the Journal of the National Cancer Institute.

“We need to find ways to bring the trials to the patients or the patients to the trials,” Unger said. “To bring trials to the patients, large changes are required. Either we need to make trials available at many more sites or provide more sites with the ability to participate. Or, we can enable patients to travel to trials more readily. That might involve finding ways to reimburse the patients for what they spend.”

Unger notes that trial participation rates are higher for pediatric cancers, at about 30 percent. That may explain why “pediatric survival rates have gone up much more than those in adults,” he said. “There is some evidence to suggest that because many, many more participate in pediatric cancer trials, (researchers) are able to advance new therapies much more quickly.”

While low trial participation is a well-known problem, “this paper actually (provides) some hard statistics,” said Bhanu Pappu, VP of Clinical Research Operations and Strategy at the Hillman Cancer Center at the University of Pittsburgh Medical Center. “It’s too hard for patients for a variety of reasons, including the fact that 85 percent of cancer care is in non-tertiary centers, where the primary focus is on patient care.”

The extra amount of time a doctor would have to spend on patients who participate in a clinical trial would not be reimbursed, Pappu said. “That is time during which they could be seeing more patients and getting more revenue, he added.

UPMC is working on addressing some of the patient barriers, Pappu said. “One approach is to bring trials to patients’ communities,” he said. “The message is: you don’t have to go anywhere else. The trial is in your back yard. We are fine tuning this right now.”

Another barrier for patients can be the way the trial’s follow-up schedules are set up, said Dina Lansey, director for diversity and inclusion in clinical research at the Johns Hopkins Kimmel Cancer Center. For example, “if a patient needs to drive to Johns Hopkins from the Eastern Shore of Maryland for a 10 minute visit, that’s ultimately a four hour trip. So they have to take the day off.”

SOURCE: Journal of the National Cancer Institute, online February 19, 2019.