During the month of April 2020, the Center for Information and Study on Clinical Research Participation (CISCRP) conducted an online United States-based survey among 500 parents and their children. The goal of this survey was to gain insight into general perceptions of pediatric trials, preferred channels of communication, key information parents and their children would want about pediatric clinical trials, as well as past or current experiences participating in pediatric clinical trials.
Parents generally self-report high levels of understanding about clinical research, and generally high willingness to have their child participate in a clinical research study. Awareness, understanding, and willingness to have their child participate was greatest among parents whose children have previously participated in clinical research.
Among children, levels of awareness of clinical research vary by a child’s age, as older children were more likely to have heard of clinical research compared to younger children. Overall, few reported that they understood clinical research “very well.” Though many were not sure whether they would want to participate, 50 percent reported that they would be willing. The top motivation to participate was altruistic, as children wanted to advance science through their participation.
During participation, parents reported highly burdensome experiences and high levels of disruption to their daily routine. Top burdens included traveling to the study clinic and having their child complete lab work like blood draws and urine tests. However, the majority of parents said that they received updates or study results once their child finished participation.
Results also indicate that children generally received adequate information about their participation. Ninety-two percent remembered getting information about the clinical trial before they joined, and 85 percent found this information “kind of” or “very easy” to understand. Despite these expectation-setting measures, children reported some study requirements as difficult to complete, most notably taking the study medication and undergoing blood draws. However, though children report burdensome study experiences, most indicate that the study exceeded their expectations, and that they would be willing to participate again.
A consistent theme throughout the survey findings was the critically important role that healthcare professionals play along the journey toward participation. For example, parents discuss clinical research with their child’s doctors often and cite their child’s doctors as the top way they learn about participation opportunities. Children would also most prefer to learn about clinical research through their doctor. Doctor’s recommendations were ultimately the top reason that parents decide to have their child participate.