Questions to ask about a clinical trial
As the patient, it is your decision whether to participate in a clinical trial. Since it is your choice, ask as many questions as you need to ask, and continue asking until you fully understand the answers. Some examples of questions you should ask about a clinical trial include:
Treatment-specific questions
- What is my prognosis? (Your prognosis is what the doctor thinks will happen with you and your cancer--your chance of recovery, the expected course of the cancer, and the length of time you will be sick.)
- What are my treatment options?
- How would the standard treatment affect my prognosis?
- In what phase is the clinical trial?
- What is the purpose of the clinical trial?
- Why do researchers believe the treatment being tested may be as or more effective than the standard treatment? Has it been tested before? In people? If so, about how many? Has anything been published about this treatment? If so, where?
- How might participation in the clinical trial affect my prognosis?
- What are the possible short-term and long-term risks and/or side effects?
- How do the possible risks, side effects, and benefits of treatment in the clinical trial compare with standard treatment?
- How often and for how long would I receive treatment?
- Who would be in charge of my care?
- Who would be my main contact if I have any problems or questions or in an emergency?
- How long would I need to remain in the clinical trial?
- Would there be any follow-up after the clinical trial?
Logistical questions
- Would I have to come to the institution conducting the trial for all treatments, tests, and procedures? How often would I have to come? How does this compare with standard treatment? (You might also ask this last question of your oncologist.)
- Where would I receive treatment?
- How long would each treatment appointment last, including pretreatments?
- What would I need to do as a participant in the trial?
- Would I be responsible for additional costs of tests or travel?
Emotional or personal questions
- How would the clinical trial affect my daily activities?
- Can you put me in touch with other people who are in the clinical trial?
- Can you put me in touch with support services if I need them?
Decision-making suggestions
After discussing questions with the doctor and/or nurse, take time to consider your options so that you feel comfortable with your decision. Some suggestions to consider when you are deciding about a clinical trial include:
- Learn as much as you can upfront. Talk to your doctor or nurse.
- List the pros and cons of your options. Determine benefits and risks that are most important to you. Is it likely that these benefits and risks will happen?
- Get your questions answered. Keep a list of all of your questions and answers, and continue to add questions to your list. Make sure you get an answer for each question from your oncologist or nurse or clinical trial healthcare team.
- Define your priorities and your role in your family or community. What or who is most important to you? Consider making a decision that helps you continue doing what is most important to you (being a parent, continuing with your job, being active in your community, etc.)
- Talk to your family and friends. Is it important for you to do what your family thinks is best? Ask opinions of people you trust.
- Consider practical issues. If you would need to travel often to participate in the trial, would someone be able to come with you? Would it be difficult for you to complete all that you are responsible for in the clinical trial? Would you dislike having to complete a patient diary if one is required? Consider the time commitment to participate in the trial.
- Think about how participating in a clinical trial would make you feel. What decision would give you the least amount of stress? If you qualify for a trial, how do you feel about trying an unproven or unapproved treatment?
Whatever decision you make, you have the right to receive the best care available. Your relationship with your doctor will not be changed by your decision.
