Study: Parents find pediatric cancer trials tough to navigate

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Parents of children with cancer enrolled in clinical trials expressed greater dissatisfaction and perceived lack of understanding of the trials than adult cancer trial participants, according to a study presented at the Congress of the International Society of Paediatric Oncology (SIOP) in Boston on Oct. 23.

The study, conducted at Dana-Farber Cancer Institute and Children's Hospital Boston, surveyed 47 parents of children and 204 adult cancer patients enrolled in clinical trials two weeks after the start of the studies.

Tony Truong, MD, of the Hospital for Sick Children in Toronto, and colleagues found that parents felt they were more hurried in the informed consent process than adults that were self-enrolled. According to the authors, 64 percent of parents, compared with 87 percent of adults, felt that they had enough time to learn about the study. Moreover, 79 percent of parents, compared with 93 percent of adults, felt they had sufficient time to ask questions about the trials.

The study also found that 80 percent of parents and 88 percent of self-enrolled adults rated themselves as unknowledgeable about the study. Despite these self-perceptions, both groups scored equally well on objective questions about the study.

"These findings were consistent with what we suspected, given the different contexts in which adult and pediatric clinical trials are offered," said Steven Joffe, MD, MPH, senior author of the study and an ethicist and pediatric hematologist/oncologist at Dana-Farber/Children's Hospital Cancer Center. "But I didn't expect such large differences."

Joffe noted that one contributing factor to the different perceptions was that 75 percent of parents were asked to enroll their children in the studies within one or two days of diagnosis, whereas the adults had lived with cancer for longer periods before consenting.

The authors reported that several changes had already been made at the clinics to accommodate parents' dissatisfaction, including medical personnel following-up to ensure parents feel informed and at times holding off on asking parents to enroll in trials immediately upon diagnosis.