A groundbreaking new study from the Alliance for Clinical Trials in Oncology aims to test whether digital tools and chatbot technology can help young adult cancer survivors get the genetic counseling they need to better understand future health risks to themselves and family members.
Led by Alliance Study Chair Angela Bradbury, MD, Professor of Medicine in the Division of Hematology Oncology at the University of Pennsylvania Abramson Cancer Center, the AYA ACCESS (Alliance A232301CD) study will enroll participants to study ways to address longstanding gaps in genetic services for adolescents and young adults (AYA) aged 18 to 39, who often receive care in community settings with limited access to genetic specialists. Research shows that more than 10% of AYAs have familial predispositions to cancer in their DNA, yet many do not receive recommended genetic testing due to barriers such as geographic distance, lack of provider knowledge, and limited time for screening.
"For adolescent and young adult cancer survivors, genetic counseling is critical to understanding future risk they may have of developing chronic health conditions or additional cancers as a result of their initial illness or treatments," said Dr. Bradbury. "This study is designed to meet AYAs where they are. By integrating digital tools like chatbots and remote genetic counseling, we hope to remove logistical and emotional barriers that prevent young patients and their family members from accessing potentially life-saving genetic information."
According to the National Cancer Institute, about 85,000 AYAs are diagnosed with cancer each year in the U.S. In addition to the unique biological and psychological needs of patients in this age group, many AYAs receive their care in settings either focused on young children or older adults, often causing this age group to feel left out of follow-up care.
The trial will enroll 465 AYA cancer patients from community oncology practices across the U.S. Participants will be randomly assigned to one of two arms:
- Standard Arm: Remote genetic counseling via telehealth with a certified genetic counselor.
- Intervention Arm: Enhanced eHealth model featuring digital pre-test education and a chatbot ("Genetics Journey") that guides patients through the process, answers questions, and provides reminders.
Both arms will include genetic testing and post-test counseling, with services provided by the Penn Telegenetics Program. The study will evaluate whether the enhanced model increases uptake of genetic counseling and testing, while maintaining or improving patient outcomes such as knowledge, emotional well-being, and cost-effectiveness.
Key innovations to be studied include tailored chatbot technology designed to engage AYAs with personalized, accessible communication that improves follow-through. Participants will also receive digital education tools that allow AYAs to learn at their own pace, revisit content, and choose online quiz options.
AYA cancer patients deserve equitable access to precision medicine. This trial could redefine how genetic services are delivered in community settings and improve outcomes for the many thousands of young adult cancer survivors who can expect to live decades beyond their initial diagnosis and recovery."
Tara Henderson, MD, PhD, Alliance Study Co-Chair, Chair of Pediatrics at Ann & Robert H. Lurie Children's Hospital of Chicago
The AYA ACCESS study is supported by the National Cancer Institute's Community Oncology Research Program (NCORP) and will be conducted in collaboration with ECOG-ACRIN Cancer Research Group, NRG Oncology, SWOG Cancer Research Network, and the Children's Oncology Group.
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