Fifty years ago, a diagnosis of childhood leukemia meant you needed to start planning your child's funeral. Now it's got an 85% cure rate, largely due to advances attributed to information gleaned from pediatric clinical trials. Yet those same pediatric cancer trials that are such a treasure trove of data are also causing parents of the sick kids considerable angst.
Unlike adult cancer patients, the majority of pediatric cancer patients — or, more accurately, their parents — are asked to take part in a clinical trial. About 80% of parents accept.
Each year, about 10,000 children are diagnosed with cancer. Although it's the second leading cause of death for children between the ages of 5 and 14, after accidental injuries, “childhood cancer is a rare disease and the only way we are going to make progress is to be very systematic about the way we do research,” says Steven Joffe, an ethicist and pediatric hematologist/oncologist at Dana-Farber/Children's Hospital Cancer Center. “The pioneers in the field realized if we don't make clinical trials an integral part of what we do, we will never make progress.”
What those pioneers probably didn't stop to ponder is the effect of these clinical trials on parents' emotional state. Transforming nearly every child into a lab rat changes the doctor-patient dynamic. “In addition to being our patients, they also become our research subjects, and that's where the ethics gets interesting,” says Joffe, who presented his research on the effect that participation in clinical trials had on parents at the Congress of the International Society of Paediatric Oncology (SIOP) in Boston over the weekend.
While most adults with cancer are treated by private practitioners at tens of thousands of sites across the country, kids with cancer almost exclusively see specialists at some 200 academic institutions that research childhood cancer. Clinical trials help that tight-knit group of doctors figure out how best to care for these sick kids. With acute lymphoblastic leukemia, for example, clinical trials have allowed researchers to learn how to successfully use 10 different drugs in combination.
Although the trials are clearly helpful from a scientific perspective, Joffe found that parents of kids with cancer feel they don't have the same level of understanding about the trials their kids are participating in as adult cancer patients, athough they actually do know as much — if not more — than adult patients.
Where's the disconnect? Joffe attributes it to the stress of a pediatric cancer diagnosis. Whereas adults entering trials often have lived with cancer for months or years, children usually have just recently been diagnosed — sometimes within the past few days.
“They've had very little time to learn about their child's condition,” says Joffe, “thinking their kid has the flu, for example, then learning that their child has leukemia.”
To make an already incredibly stressful situation a bit more comprehensible, Joffe suggests staging the decisions parents are asked to make. Instead of asking for consent up-front for a bone marrow aspiration weeks or months down the road, he says it's better to focus on immediate decisions. Oncologists should better sort and prioritize the information they share with parents. “It's not rocket science,” says Joffe. “Rather than throwing everything at them, we need to organize the information.”