By Ashton Hitchcock, BA, CCRP, Illinois CancerCare
Being able to offer patients an array of treatment options through clinical trials is central to the goal of putting patients first. However, this does not mean clinical trials are right for everyone.
When offered a clinical trial to treat your cancer, a lot of thoughts may race through your mind. You want to be confident in your decision but may not want to disappoint family members, friends, or your provider by your decision. From a research perspective, it is important that you feel your decision is the right one. By asking why patients decide to participate or not participate in clinical trials, providers can grasp a better understanding of what it is that an individual patient wants to get from their research experience.
“Yes, I want to do it.”
“I’m doing it for my (insert family member[s] here).” Maybe you feel your contribution will help advance knowledge about how to fight cancer and provide more options for your family in the future should they be diagnosed. This is a good reason to participate in a clinical trial.
“I just want to try something different from the normal treatment.” Maybe you are being offered what is tried and true but do not necessarily believe it to be the best option and want to try something that better fits your treatment goals. This is a good reason to participate in a clinical trial.
“It will be nice to have some help financially with certain aspects of treatment.” Perhaps there is an opportunity for some or all of the cost of treatment to be covered by the study. While this is not true for every trial, it is true that certain portions of treatment or clinical assessments may be provided to participants at no cost. While this should not be the only reason to decide to go with a research option, this is still a good reason to participate in a clinical trial.
“I have no other standard treatment options, so I feel like I have no other choice.” This may be true from a treatment standpoint sometimes, but it is not always the case. No matter where you are in your cancer treatment journey, you always have the choice to decline further intervention. For patients not at the point in their cancer journey that they are ready to be done with treatment, this can be a good reason to participate in a clinical trial.
“I don’t think this is for me.”
“I don’t want to do it if there is no direct benefit to me.” Most research studies being done for cancer treatment may provide some direct benefit to the patient, but that cannot always be guaranteed. So if you feel the possible risks outweigh the possible direct benefit to you and would rather not take on that amount of risk, this is a good reason to not participate in a clinical trial.
“It just seems like it will take too much time.” The majority of clinical trials try to minimize the additional time commitment, but it is true that some studies can be more complex and require more time input on your part. If your lifestyle is such that you cannot take on additional time commitment, or maybe you cannot make the required assessments, this is a good reason not to participate in a clinical trial.
“I feel like it will cost me too much money.” While most studies try to schedule assessments and treatments so that patients will not incur additional costs while on a trial, sometimes there are additional costs related to participating. On the whole, these can be minimal, but if this is your reason, it is still a good reason not to participate in a clinical trial.
“I don’t feel that I want treatment anymore.” As discussed before, this is a hard decision to come to for a cancer patient but is a very respectable one. Receiving no treatment or intervention is a treatment choice and one that you are always entitled to. This is a good reason not to participate in a clinical trial.
“So what is the truth about research? What should I do?”
It is true that clinical trials are 100 percent voluntary. It is true that you have the right for your provider and clinical research coordinator(s) to be 100 percent transparent with you about risks and benefits, costs, and every other aspect of the trial. It is true that you can be a part of advancing knowledge about how to fight cancer and control treatment side effects of cancer symptoms.
Keep in mind that you may decide to participate in a clinical trial for the exact same reason another patient decides against it. No matter what you ultimately decide or what route you take there, the truth is, your choice is the right choice.
The Illinois CancerCare office in Bloomington is located at 3105 Magory Drive. For more information, call 309-662-2102, or visit www.illinoiscancercare.com.
Photo credit: GlobalStock/iStock