Childhood Leukemia: Should Your Child Participate in a Clinical Trial?

As a parent of a child diagnosed with leukemia, you will be faced with making many decisions about your child's care. It can be overwhelming to sort out details and weigh risks and benefits of various treatment options as you deal with your emotions and help your child cope with his illness. You will be entering a world of medical jargon, procedures and medicines you probably haven't been exposed to before. Though it may be confusing, you need to be well-informed to make the best decisions for your child.

One of the decisions you will most certainly have to make is whether or not to participate in a clinical trial or study. Clinical trials are managed by medical researchers who are trying to find better methods of treating patients. Perhaps they are trying to find out if a certain drug is better than the ones currently used. The trial may seek to determine if the drug achieves the desired results with fewer side effects, for example. Or it may want to determine if a drug puts a patient into remission sooner. The clinical trial may simply be a fact finding mission and want to record information about the treatment your child is receiving and how your child's body and leukemia respond to that treatment. Information gained in these trials is used to develop more effective treatment protocols in order to provide future patients with better treatment options. Chances are the treatment your child is receiving has been developed from past clinical trials.

It is your right and duty as a parent to understand the terms of the clinical trial. You need to be able to weigh the risks and benefits of participating in the study against the risks and benefits of not participating. Your child's oncologist should be able to provide written documentation outlining the study for you to refer to. Some issues to consider are: How does the treatment proposed in the clinical trial differ from the current standard of care? How long will your child be a participant? If you agree to the trial can you withdraw later? What are the risks your child may face as a participant? Who is funding and conducting the trial? A good oncologist will take the time to answer all of your questions. He will understand that you want to do what is best for your child and that you need the details of the trial to be described in terms you can understand.

If after talking to your child's oncologist you still have questions, there are other sources of information you can go to for assistance. You can seek the advice of another oncologist or trusted medical professional. You can research the clinical trial on the internet. You can contact cancer agencies (check the internet or your phone directory for contact information) which should have knowledgeable representatives that can speak to you. These agencies often have written information that pose questions for you to ask and information to consider when making your decision. You can also attend support groups that will put you in contact with parents who have already experienced what you are going through. They may be able to provide information on the same trial you are considering as well as insight about possible risks and benefits of participating. These parents may be willing to share the criteria that helped them make decisions about whether or not to participate in any trial.

Your child is precious and deserves the best you can give him. You may not have been able to prevent the illness that he is suffering from, but you can help him cope and gain the most from available treatments. Don't be afraid to ask questions and gather information. There truly are no "dumb questions" when it comes to your child's health and trying to decipher the complex issues and treatments that come with an illness like leukemia.