Web-Based Resource for Children and Adolescents About Clinical Research

Research

Purpose: To develop and evaluate the efficacy of an interactive and developmentally appropriate web-based resource for children and teens to learn about clinical research. The intention is for this resource to increase awareness and knowledge of pediatric clinical research as well as enhancing self-efficacy for and positive attitudes about participating in clinical trials.

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Nurse Discussing Test Results With Patient In Office Looking At Documents

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OVERVIEW

Pediatric clinical trials enable the testing of appropriate and effective treatments for children, whose bodies may react differently to treatments than adults.

There are a number of potential benefits to participating in pediatric clinical trials and more opportunities for youth to participate now compared to previous years; however, pediatric clinical trial accrual remains challenging. Perceived barriers to participation may outweigh the perceived benefits, especially if families are uninformed about the importance or benefits of pediatric clinical research to their youth and the society as a whole. One way to overcome this is by providing information about the importance of pediatric clinical research to children (and parents).

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This project set out to create an interactive and developmentally appropriate web-based resource for children and teens to learn about clinical research. An iterative process of development was used to create the resource, including feedback from Youth Advisory Panels and pediatric clinical trial experts; usability studies; and optimization for Section 508 compliance. These efforts created, DigiKnowIt News, a website for children and teens, which includes interactive learning modules, electronic comic books, and videos of children, teens, and medical experts. Topics include: 1) definition and importance of pediatric clinical trials; 2) roles in a clinical trial; 3) questions to ask before, during, and after a clinical trial; 4) participant rights; 5) benefits and risks of participation; and 6) different types of procedures (e.g., scans).

A randomized controlled trial was conducted to evaluate the efficacy of DigiKnowIt News for improving youth outcomes related to participation in clinical trials. Youth who used the website, compared to those that didn’t, demonstrated more knowledge about clinical trials and reported more confidence for participating in clinical trials at posttest. They also described high levels of satisfaction with their experience reviewing the website. The findings from this research suggests that an educational website, such as DigiKnowIt News, can improve factors related to higher rates of pediatric clinical trial accrual.