Researchers urged to improve involvement of children in clinical trials

Cancer is the top disease-related cause of death in U.S. children age 1 to 19, and nearly 25 percent of the 12,400 children newly diagnosed with cancer will die of the disease.
By Amy Wallace  |  June 15, 2017 at 4:06 PM
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June 15 (UPI) -- A recent study found that children as young as 8 with incurable cancer can reliably assess the impact of clinical trials on their symptoms and quality of life.

In children age 1 to 19, cancer is the leading disease-related cause of death in the United States and nearly 25 percent of the 12,400 children newly diagnosed with cancer will die from the disease.

Researchers at the Children's National Health System analyzed outcomes from children and adolescents age 8 to 18 with incurable or refractory cancers who were enrolled in Phase 1 safety trials and Phase 2 efficacy trials at Children's National, Seattle Children's Hospital, Children's Hospital of Philadelphia and Boston Children's Hospital.

They used a validated instrument to measure symptoms, function and other aspects of quality of life as reported by 20 patients, 60 percent of whom were male, 65 percent adolescent and 70 percent white.

Approximately 65 percent of patients had solid tumors and described good days as having fewer side effects and less interruptions in daily life from experimental therapy.

They described bad days as being marked by more interruptions in everyday activities and missing out on time with family and friends due to hospitalization.

"Only by measuring and understanding self-reported symptoms and function in children and adolescents with incurable cancer can we adequately address threats to their quality of life and improve symptom control and supportive care," Dr. Pamela Hinds, director of Nursing Research and Quality Outcomes at Children's National, said in a press release. "By giving children a voice in the process, clinicians will be able to better anticipate and manage symptoms and thereby improve life for patients and their families."

Study participants suggested adding questions to surveys about being away from home, friends and family and the ripple effect of treatment on other family members.

"When experimental cancer drugs are studied, researchers collect details about how these promising therapies affect children's organs, but rarely do they ask the children themselves about symptoms they feel or the side effects they experience," Hinds, said. "Without this crucial information, the full impact of the experimental treatment on the pediatric patient is likely underreported and clinicians are hobbled in their ability to effectively manage side effects."

The study was published in the June edition of Cancer.

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