ANCHOR LEAD: MOST KIDS WITH CANCER WHO ARE ENROLLED IN CLINICAL TRIALS DON’T REALLY UNDERSTAND WHAT’S INVOLVED, ELIZABETH TRACEY REPORTS
Kids with cancer have plenty to think about, so when it comes to really getting involved in the decision making regarding study participation, they don’t really seem to get it, as reflected in a study by Yoram Unguru, a pediatric oncologist who’s also a bioethicist at Johns Hopkins. Yet there are good reasons for trying to make sure kids are up to speed, Unguru says.
UNGURU: There’s very good evidence to suggest that all people, children included, who are invested in their care have better outcomes. When it’s appropriate, this study is telling my colleagues and I that we need to do a better job at how we go about soliciting a child’s assent and finding out what they understand. Some people could argue that the decision making aspect is not as important as the understanding and I’m happy to have those discussions but I think at the very minimum we need to make an effort to improve upon what we do now. :29
Kids also need to be encouraged to speak up and question both physicians and parents, Unguru says. At Johns Hopkins, I’m Elizabeth Tracey.