Why is adult participation in cancer clinical trials low?
Low participation rates by adults in cancer clinical trials are associated with the following issues, which have been identified in several national surveys (2, 4, 5).
Public awareness of clinical trials is low. That’s a serious problem because what we don’t know CAN hurt us. If cancer clinical trials move slowly, progress in cancer care also will move slowly. We all have to take time to make awareness a priority. If your doctor is too busy to discuss clinical research, take advantage of external resources.
Clinical time constraints are a significant problem in need of an effective solution. Finding an appropriate study takes time, but it’s time well spent if it helps people make informed choices about appropriate clinical trials that will ultimately improve the standard of care.
Randomization is misunderstood and deters some people from wanting to be in a clinical trial. Randomization is a scientific method that protects integrity by giving everyone an equal chance of being assigned to a particular study group. Everyone thus gets an equal chance to be in the group that gets the current standard of care (the control group) or the group that gets the experimental treatment. Randomization reduces bias, or conclusions driven by preference rather than objective interpretation of scientific data.
Many people see clinical trials as a “last-ditch” effort to be explored only after all known treatments have failed. Waiting too long to try a clinical trial increases the chance for problems that will prevent enrollment.
- Waiting too long to consider a clinical trial may make a patient too ill from the disease and prior treatment to meet eligibility requirements.
- Waiting until every possible drug has been tried increases chemo-resistance, meaning that exposure to many substances changes cancer cells in a way that makes them “immune” to drugs.
- Another potential problem is delayed interest in a study in which the standard-of-care drug will be given in a new way (different dosing or timing or in combination with another drug). If the drug that’s being given in a new way was part of prior treatment, the patient is likely to be ineligible for the study.
Some people fear that the new treatment is unsafe. It can’t be tested in people unless extensive tests have shown promising results (see clinical trials process).
Contrary to what some people fear, no one gets a placebo or “sugar pill,” which would be unethical. A placebo has no therapeutic value and is NEVER used when there is a current standard of care.
- The control group gets the standard of care, while the experimental group gets the experimental treatment.
- The only time a placebo is used is when there is no known treatment.
Costs associated with clinical trials are presumed by some people to be prohibitive. In reality, costs usually are not an issue (2).
- Medicare covers many of the costs associated with clinical trials.
- The manufacturer of the experimental treatment usually covers the cost of the study drug or device.
- Medical insurance covers the standard treatment given to the control group.
- Costs that may not be covered are related to treatment for side effects or additional tests that are needed to measure response to the study drugs. It is important that you understand that each trial is unique and should be discussed in detail with the clinical trial coordinator for a particular study.
