Children With Cancer Often Unaware of Study Participation

Many children have limited understanding of their involvement in cancer research

MONDAY, March 29 (HealthDay News) -- Pediatric cancer patients often do not realize their treatment is part of a research study, do not have a good understanding of the research in which they are participating, and feel uninvolved in the decision-making process, according to a study published online March 29 in Pediatrics.

Yoram Unguru, M.D., of the Herman and Walter Samuelson Children's Hospital at Sinai in Baltimore, and colleagues conducted a study of 37 cancer patients, aged 7 to 18 years, using face-to-face interviews to ascertain their understanding of research, including research related to their treatment, and whether or not they preferred to be included in the decision about participation in research studies.

The investigators found that 19 children (51 percent) did not know or recall being told that they were participating in research, while 19 out of 22 patients (86 percent) did not understand what their doctors told them about the trial. Helping future children with cancer was the motivating factor for 27 children (73 percent), while personal benefit was cited by 22 participants (60 percent). Children with Hodgkin's disease, germ-cell tumors, and leukemia had greater research appreciation and awareness compared to children with other cancer types. In addition, 18 of 37 children (49 percent) did not remember playing a role in the decision to become involved in a clinical trial, and 14 of 37 (38 percent) did not feel they could oppose study enrollment.

"Physicians must establish that children and parents understand their own and each other's role and responsibilities," the authors write. "Effective communication is a prerequisite for shared decision-making and provides a strong foundation on which to base assent."

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