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Do sick children understand complex care issues?

Most children with cancer participate in clinical trials related to their care. And while doctors usually seek to educate their young patients about that research, it is unclear how well children can understand the complex medical issues related to cancer care.

Do sick children understand complex care issues?

Most children with cancer participate in clinical trials related to their care. And while doctors usually seek to educate their young patients about that research, it is unclear how well children can understand the complex medical issues related to cancer care.

So, cancer doctors from Herman and Walter Samuelson Children's Hospital at Sinai and Johns Hopkins University in Baltimore and from the National Institutes of Health in Washington, D.C. asked 37 children with cancer aged 7 to 18 years whether they understood the information they were given about the research trials that they participated in during their care.

More than half of the children — 19 patients — didn't know or remember that their care was considered research. Using face to face interviews, the researchers found that 18 of the children didn't have or remember having a role in deciding to participate in a trial and 14 told the researchers that they "didn't feel free" to say no to being part of a trial.

The study, published in the medical journal Pediatrics, concluded that "most children have limited understanding of research despite physicians' explanations." The authors said doctors needed methods to make sure children understand what they are agreeing to when they participate in research trials.