Development and pilot testing of AYA-RISE, a risk information and screening education intervention for adolescents and young adults with cancer risk syndromes

Genetic testing is increasingly recommended for adolescents and young adults (AYAs) with cancer; however, no AYA-specific models for cancer risk communication have been developed. We developed a chatbot-based patient- and family-centered cancer risk communication tool, the AYA-RISE (AYA-Risk Information and Screening Education) intervention for AYAs aged 12–24 years. The intervention was developed together with AYAs with cancer risk syndromes, their family members, and clinicians, using Invitae’s Gia® chatbot (study Phase 1). 17 AYAs participated in a group discussion and completed surveys for input regarding development. Content was developed for 9 different syndromes. AYA-RISE was then refined after iterative input (Phase 2) and evaluated for feasibility and preliminary outcomes in a pilot study (Phase 3). 100% of AYAs used the intervention through a point at which risk information was presented via the chatbot and portal demonstrating enrollment and chatbot use feasibility. Our threshold for acceptability was exceeded, with a post-test Acceptability of Intervention Measure (AIM) score of > 4 by 80% of AYAs. In the pre-visit survey, 40% of AYAs correctly reported risk of cancer by age 30, and 20% correctly reported lifetime cancer risk. Following the visit and use of the chat, 60% correctly reported risk of cancer by age 30 and 90% correctly reported lifetime risk. No significant differences in participant pre (3.4) and post (3.6, p=.34) distress thermometer mean scores were observed. The AYA-RISE intervention was feasible and acceptable for use by AYAs. Preliminary outcomes included improved knowledge when used in conjunction with a cancer risk clinic visit, without increasing distress. A randomized trial is currently ongoing.