Cancer Clinical Trials: Why Don’t More of Us Participate?

A recent study got me thinking again about one of the central issues around clinical trials — why don’t more of us participate?

Less than 5 percent of adult cancer patients overall participate in clinical trials, and the rate is even lower for patients from minority populations.

Some of the concerns that keep people from joining clinical trials arise from misperceptions about how clinical trials work. But often patients don’t know to ask about clinical trials and their doctors don’t mention them.

One of the common misperceptions about clinical trials is that they’re only for patients with advanced cancer. In fact, there are clinical trials that focus on all cancer stages. But a newly diagnosed patient or their family may not know much if anything about clinical trials. I certainly did not.

The possibility of participating in a clinical trial came up briefly when I was considering treatment options after a second diagnosis of early stage breast cancer. We weren’t certain that I would need chemotherapy again. Since there wasn’t a lot of information about patients in my specific situation to go on, my doctor checked to see if there were any clinical trials that I might be a candidate for.

As it turned out, there weren’t any at that time that were relevant for me. After further consultation with other physicians we decided to go with the chemotherapy. If my oncologist had offered a clinical trial as an option I know I would have considered it carefully, but I’m not sure I would have thought about looking for one on my own.

What Patients and Doctors Think About Clinical Trials

A recent survey of more than 1,500 consumers and nearly 600 physicians conducted on behalf of Memorial Sloan Kettering Cancer Center examined attitudes towards clinical trials today.

The study found that only 40% of Americans have a positive impression of clinical trials. And only 35% said they would be likely to actually enroll in a clinical trial.

Why was there so much reluctance? These were the top concerns consumers pointed to:

• Worry over side effects/safety (55%)
• Uncertainly 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%)

But it was interesting that, when consumers understood more about clinical trials, attitudes changed noticeably. After reading a brief statement providing more information about clinical trials, respondents with a positive impression of clinical trials jumped from 40% to 60%. And those saying they would be likely to enroll in a clinical trial rose from 35% to 44%.

Interesting that just reading a statement would have that much impact. This is without getting to whatever input a patient might receive from their doctor.

But when do patients typically hear about clinical trials from their doctors? The survey found that 81% of physicians said it is very important for patients to understand what clinical trials are. But contrary to that high recognition of the importance of trials, a striking 65% of the doctors said they were unsure or neutral about whether participating in a clinical trial will benefit patients.

Perhaps reflecting that uncertainty, physicians do not appear to be proactive in identifying clinical trials for patients when there are standard treatments available. The top reasons physicians gave for referring patients to clinical trials were that all standard treatment options had been exhausted or that a specific treatment was only available through clinical trials.

Addressing Concerns of Patients

A 2014 article in Fred Hutch News  reported on the National Cancer Institute’s Cancer Information Service, which is based at Fred Hutch Cancer Research Center.  The CIS has trained specialists who provide information to patients, family members and health care providers on a variety of cancer related topics including clinical trials.

The article reports that the chief concerns of patients who call CIS to talk about clinical trials include financial costs and fear of not getting the experimental treatment. 

Often, concerns in both of these areas can be addressed with fuller information and understanding of the issues.

Routine costs for participating in a clinical trial may be covered by a patient’s insurance. The message to callers to CIS regarding financial concerns is that costs need to be evaluated but it should not be assumed that they are a barrier.

When it comes to concerns about getting a placebo or not getting the experimental treatment, patients aren’t always aware that in cancer trials the new treatment is usually tested against the standard treatment rather than a placebo.

In addition, CIS specialists note that a new treatment is not necessarily going to prove better than standard care. They also point out that patients who want to be sure to receive an experimental treatment “have the option of seeking out an earlier phase trial in which only the new therapy is being tested, with the understanding that researchers are at an earlier stage of determining dosage, safety and effectiveness.”

Why Aren’t More Adult Cancer Patients Told About Clinical Trials?

Many of the concerns that patients have about clinical trials seem to reflect the limited understanding of how trials work and their risks and benefits that most of us start with. Those who know enough to reach out to a service such as CIS can get help with sorting through their concerns. But how do most patients know to investigate if their doctor doesn’t mention that they may be a candidate for a clinical trial?

It’s interesting that, while less than 5 percent of adults with cancer join a clinical trial, the rate is much higher for children. In fact, about 60 percent of children with cancer receive treatment through a clinical trial. The higher survival rates for childhood cancer have been linked to the involvement of children with cancer in clinical trials over many years. Apparently, children with cancer and their families routinely become aware of and choose to participate in clinical trials.

One wonders what happens differently for children than for adults to allow this to happen. What a difference it would make if there were anywhere near that level of participation in adult cancer clinical trials.

It’s only through clinical trials that new cancer treatments including the newer targeted therapies, as well as preventive therapies, make their way to patients. Even where there are established standard treatments available, most of these could be improved upon with treatments that are more effective and have fewer adverse side effects.

If we hope to see more rapid advances, we need to address both patients’ and doctors’ concerns about trials and establish supportive policies that actively encourage enrollment in trials.

For More Information

Living Beyond Breast Cancer has recently posted an excellent series of articles on its blog on a range of topics related to clinical trials, including:

• clinical trial experiences and hurdles for men with breast cancer,
• basket clinical trials, which enroll patients by mutation status rather than where in the body a tumor originates,
• raising awareness of clinical trial options for African-American women and
• patient reported clinical trial outcome assessments.

Other helpful resources on clinical trials include the American Cancer Society’s Clinical Trials: What You Need to Know and the National Cancer Institute’s Clinical Trials Information for Patients and Caregivers.

Related Posts
Clinical Trials: How Can Patients Benefit More?
The I-SPY 2 Breast Cancer Trial: How Clinical Trials May Be Changing

Photo Credit: Rob Wilson via Shutterstock