Luckily, cancer in children is rare—less than 1 percent of cancers diagnosed in the United States are in children. Of course, that is probably little consolation if you are a parent or family member of a youngster with this disease.
The relatively low rate of pediatric cancer makes it especially important for doctors and scientists nationwide to work together on research studies that gather data from different treatment centers so they can learn more, more quickly, about how to get the best results for patients. Nearly all children diagnosed with cancer in this country are cared for at one of more than 200 institutions that make up Children’s Oncology Group (COG). Seattle Children’s, a Seattle Cancer Care Alliance (SCCA) founding organization, is one of them.
Through cooperative efforts such as COG, doctors continue to make significant progress in treatment. Clinical studies, also called clinical trials, are the backbone of this success. In fact, more than half of all American children with cancer receive their therapy as part of a clinical study.
“We believe passionately in clinical trials, because they work,” said Jeffrey Russell Geyer, MD, a pediatric oncologist with Seattle Children’s and SCCA. As a result of the progress made through research, the outlook for most children with cancer is promising—about 80 percent of children diagnosed today survive. This is a significant improvement compared to the 10 to 20 percent survival rate seen 50 years ago.
Understanding the Options
If your child has been diagnosed with cancer, his or her doctor may talk to you about having your child participate in a clinical study. Participation is completely voluntary. Whether your child participates in a clinical study or not, through Seattle Children’s and SCCA your child will get the same high quality of care.
When considering a clinical study, you will likely want to understand any differences between the standard treatment for your child’s disease and the treatment your child would receive in the study. In a typical randomized clinical study for children with cancer, some children receive the standard treatment, while others receive an investigational treatment. Often this investigational treatment is very similar to the standard; for example, it may be the same drug given at a different dose or given with a different combination of drugs previously shown to be effective. Your child’s treatment team can explain all your child’s treatment options, including standard and investigational treatments.
When talking to parents about clinical studies, Dr. Geyer tries to be “extraordinarily clear” about the possible risks as well as the possible benefits to their child. “We approach most families with the idea that we have an opportunity to cure the child [with a clinical study],” he said. “But it is not a guarantee.”
Ask as many questions of your child’s treatment team as you need to feel comfortable before deciding on a study. Talk with your child’s treatment team about how much time you have to decide on a course of treatment. Depending on your child’s disease, doctors may need to start treatment very quickly, or you may have days or weeks to make a treatment choice.
Doctors understand that you may want a second opinion before deciding, and they will not be offended if you ask about getting one. The ideal way to do this is to discuss it with your child’s primary oncologist to ensure that any consulting doctor has timely access to your child’s full medical information.
Differences Between Children and Adults
Since cancer in children is uncommon, most cancer therapies have not been tested in children. A common approach has been to use data from adult research and adjust for the body weight of the child; however, children aren’t just small adults.
Differences between adults and children in the biology of tumors, metabolism, organ development, and body proportion may cause children to respond differently to treatments. This is one reason why it’s important to conduct studies with children as well as adults. It’s also important that researchers working with children give special consideration to the differences. Even so, it may be comforting to know that in many clinical studies of an intervention not previously used in children, the treatment has already been tested in adults.
Another important difference is that children under the legal age of consent—age 18—cannot give informed consent, which implies fully understanding the study process, the risks, and other factors. This means you must be involved in the decision and must give permission for your child to enroll in a study.
Depending on your child’s age, he or she may be able to understand at least some aspects of this decision and may have an opinion. According to the National Commission for Protection of Human Subjects of Biomedical and Behavioral Research, children age 7 or older can assent or dissent (agree or not agree) to take part in studies. According to the National Cancer Institute, researchers must obtain a child’s assent unless:
- The child is not capable of assenting (for instance, the child is an infant).
- The clinical study offers a therapy thought to be better than those currently available.
- The clinical study is the only treatment option.
Before your child assents or dissents, the study must be explained to them in terms appropriate to their age. Your child’s treatment team can help with this. Visual aids may help, too.
For more information, be sure to read the rest of this patient guide to clinical studies. Also, there are several other websites where you can learn more, including websites specific to children who have cancer.