Pediatric vs. Adult Participation
Why do so few adults participate in clinical trials?
There are many reasons why more children than adults participate in clinical trials, but one major point that is not in dispute, is advances in clinical trials have played a major role in the increase in cancer cure rates. Due to advances in availability of studies, improvement in outcomes along with the high quality standard of care being the rule not the exception, it is easy to understand why most parents choose to enroll their child in clinical trials.
Researchers are able to determine what can be done to save more lives or how to improve the quality of life and reduce long-term effects for patients undergoing treatment. It is widely recognized that clinical trials provide the best outcomes among childhood cancer patients. Because of this insurers typically pay for treatment in pediatric clinical trials. For adults, not all insurance companies cover the costs of clinical trials, such as costs associated with additional medical tests (See Chapter 6). What is covered will vary by insurance plan and the specific clinical trial. If you locate a trial you would like to participate in, ask for assistance in helping to determine what will be covered. Charges that are not covered by insurance may be paid by the study.
Since the 1950s, cooperative research has improved the survival rates for childhood cancer from less than 10% to over 77% overall. (Cure rates vary according to each specific type of childhood cancer.) Pediatric cancer research has also been beneficial by improving the basic understanding of cancer, treating adults with cancer and advances for treating other diseases of children and adults.8
Another reason for the high percentage of children being enrolled in clinical trials is that when a child is diagnosed with cancer they are usually referred to a major treatment facility, such as a Children's Hospital, because childhood cancer is rare and is best treated by the specialists at these facilities. These pediatric oncology specialists are often members of Children's Oncology Group, or COG. COG sponsors clinical trials for most childhood cancers.9
Unlike the increase seen in the past decade in pediatric clinical trial enrollment, approximately 20 percent of adult cancer patients would be eligible to participate in clinical trials however only 3 to 5 percent of this group choose to participate. Emerging adult cancer therapy is focused on drugs that kill only the cancer, while not harming the normal cells of the patient. This new therapy is referred to as "targeted therapeutics" which is a way of finding the weak spot of a tumor in a specific manner. Targeted therapeutics has shown great success in a number of adult cancers. Unfortunately, pediatric cancers are so different from adult cancers that targeted therapeutics must be developed specifically for pediatric cancer.
Through the development of targeted drugs for children with cancer, children world-wide could benefit from cancer therapies that would require less ongoing care in contrast to today's standard therapies. Children would benefit from additional drugs leading to a greater number of cures, and cures that would be associated with the life-long after effects currently caused by standard cancer treatments.10
While there has been a lot of time devoted to recruiting more adults willing to participate in clinical trials, enrollment remains low. There are some valid reasons why patients are not able to participate in a trial. Some of these reasons may include:
- not meeting the eligibility criteria
- not being informed of the availability of a clinical trial
- not knowing how to locate a trial
- having practical or personal obstacles such as distance to the closest trial
- financial inability to participate
- suspicious of researchers
- not wanting to go against their doctor’s wishes
As discussed in Chapter 7, Doctors themselves can be obstacles to patients' considering clinical trials. Some of these reasons include:
- lack of knowledge about clinical trials
- unwilling to "lose control" of a person's care
- belief that standard therapy is best
- concerned that clinical trials mean additional paperwork
- concerned about how the patient will react to the suggestion of a clinical trial
If you are interested in a clinical trial, you should not hesitate to ask your doctor about whether there are trials that might be right for you. If your physician does not know how to find trials, clinical trial resources are located in the Resource Appendix at the end of this guide.11
8Cure Search, Progress. Retrieved 3/29/2009 from
9Ped Onc Resource Center, Clinical Trials. Retrieved 3/29/2009 from
10Candlelighters Childhood Cancer Foundation, Why Research is needed.
Retrieved 3/29/2009 from
11Ovarian Cancer National Alliance. Barrier to Clinical Trials. Retrieved 2/25/2009
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