Facilitators and Barriers to Pediatric Clinical Trial Recruitment and Retention in Rural and Community Settings: A Scoping Review of the Literature

Author(s): Sara E. Watson, Paul Smith, Jessica Snowden, Vida Vaughn, Lesley Cottrell, Christi A. Madden, Alberta S. Kong, Russell McCulloh, Crystal Stack Lim, Megan Bledsoe, Karen Kowal, Mary McNally, Lisa Knight, Kelly Cowan, Elizabeth Yakes Jimenez

Who sponsored this study?

This research was supported by the Environmental influences on Child Health Outcomes (ECHO) program, Office of The Director, National Institutes of Health.

What was done?

The authors conducted a review of published research papers to determine what factors make it easier or harder for children to participate in clinical research studies in rural and community-based settings. The authors considered studies to have been conducted in a “community-based setting” if all activities occurred outside of a clinic or hospital. The team reviewed other published articles to determine what strategies other researchers had used to enroll children in studies and help them stay enrolled until the studies were completed. They then looked to see which strategies were most helpful.

What was found?

In this systematic review, there were few published studies that specifically describe useful strategies for enrolling children in rural settings into clinical trials or strategies to help them stay enrolled. Strategies that have been helpful include sending families visit reminders, building relationships with community members, making it easier for families to get to study visits, and paying families for the time they spend participating in the study. Not having enough staff and resources were listed as barriers to enrolling children and helping them stay enrolled in studies.

What do the results mean?

More studies are needed to understand the best ways to engage children and their families in rural areas in clinical trials. While many of the factors identified in this review that are barriers to or supporting of research are common across all research—such as participant reminders, building relationships with families, and adequate resources—it is critical that study teams look specifically at issues important to rural communities—such as paying for travel costs and facilitating delivery of study materials to remote sites.

Why was this study conducted?

Good clinical trials can help improve patient health outcomes by informing evidence-based medicine and public health interventions. However, children and adults who live in rural settings are underrepresented in clinical trials. This can affect the quality of health care for rural populations and contribute to rural health disparities.

You may learn more about this publication here: https://ascpt.onlinelibrary.wiley.com/doi/10.1111/cts.13220

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.