After a child has been diagnosed with cancer, one of the first conversations we have with families is about clinical research. In fact, almost all children with cancer have the opportunity to participate in research, and many parents are asked to make decisions about enrollment early in their child’s cancer experience. The question we as researchers have to ask ourselves: Is this unfair? Parents are already struggling with the nearly impossible tasks of accepting their child’s cancer, assimilating huge amounts of new (perhaps confusing) medical information, and uprooting their lives to meet the demands of illness. Can they also make educated decisions about enrolling their child in clinical research?
Many ask, “What would you do if it were your child?” The question is not surprising; parents often make cancer-treatment decisions by “trusting staff.”1 Unfortunately, the answer is often, “I don’t know.” And that answer is true.
We don’t know how it feels to walk in your shoes, with your family’s values, perspectives and relationships. We also come from a different perspective, one where research is embedded in our training and guides almost all of our medical decision-making. We believe in research, but we don’t want to bias you with that belief. (As an aside, I’m pretty sure that all of my training and perspective would be forgotten if it were my own child, and I would ask the very same question of my medical providers. Like you, my single goal would be to do the right thing for my child.)
But, here is where it gets tricky. The goal of clinical research is to improve our understanding of health, illness and the treatment of disease. It is about helping future patients, if not society at large. Pediatric cancer is one of the success stories of clinical research (and this is why we believe in it so strongly). Through collaborative research efforts nation- and world-wide, cure rates for pediatric cancer have gone from 20% to 80% in the past 30 years. Integration of clinical research with clinical care has become a marker of high quality medical care. It is even one of the criteria in the US News and World Report hospital ranking system. In contrast, the most common reason parents enroll in clinical research studies is to receive some direct medical benefit for their child; only 20% report wanting to help future patients; fewer than 10% enroll because their doctors advise it.2
Of course, this doesn’t mean you shouldn’t enroll. Parents who have previously participated in clinical research say they had a positive experience and would make the same decision again.3 Although we can’t promise specific medical benefits for individual patients, historical experience with pediatric cancer is that those who enrolled on clinical research trials did better. (I should note that studies here at Seattle Children’s suggest this is no longer true; outcomes here are the same for patients on and off clinical trials. This is likely because our “standard of care” is based on prior research discoveries and therefore the same as the state of the science.4) We also only offer studies if they match or build on our current standard of care. Each study has been exhaustively reviewed by our team and other experts across the country and world. We believe it has the promise to help patients in the future.
Which brings me back to the question I hear often: What would I do if it were my child? As a pediatric oncologist and researcher, my bias is to say I would enroll. But, as a parent, I have no idea. I would struggle and worry and ask my medical provider for advice. I wish that we providers were more able to give that advice. What we can tell you is this: without exception, every parent we meet figures it out and makes the right decision for his or her child and family. And we providers are grateful to stand by and support you – whatever you choose.
Dr. Abby Rosenberg is the medical leader of Seattle Children’s Adolescent and Young Adult (AYA) Cancer Program. She is also a researcher in Seattle Children’s Research Institute’s Center for Clinical and Translational Research.
- Seattle Children’s Cancer and Blood Disorders Center
- Seattle Children’s Adolescent and Young Adult (AYA) Cancer Program
- AYA Cancer Care Unit
- Hinds PS, Drew D, Oakes LL, et al. End-of-life care preferences of pediatric patients with cancer. J Clin Oncol 2005;23:9146-54.
- Truong TH, Weeks JC, Cook EF, Joffe S. Altruism among participants in cancer clinical trials. Clin Trials 2011;8:616-23.
- Keusch F, Rao R, Chang L, Lepkowski J, Reddy P, Choi SW. Participation in Clinical Research: Perspectives of Adult Patients and Parents of Pediatric Patients Undergoing Hematopoietic Stem Cell Transplantation. Biol Blood Marrow Transplant 2014.
- Koschmann C, Thomson B, Hawkins DS. No evidence of a trial effect in newly diagnosed pediatric acute lymphoblastic leukemia. Arch Pediatr Adolesc Med 2010;164:214-7.