Abstract
Importance
Adolescents and young adults (AYAs) with hereditary cancer predisposition face high rates of lifetime cancer risk. Models to support their understanding of cancer risk have not been developed.
Objective
To assess the effect of an electronic chatbot-based cancer risk communication tool on AYAs’ understanding of cancer risk.
Design, Setting, and Participants
This randomized clinical trial was conducted at the Dana-Farber Cancer Institute, Emory University/Children’s Healthcare of Atlanta, University of Chicago, and University of Utah Huntsman Cancer Institute between December 20, 2022, and May 30, 2025 and compared cancer predisposition visits alone vs visits with an electronic chatbot-based cancer risk communication tool, AYA Risk Information and Screening Education, using baseline and follow-up surveys to assess changes in knowledge of cancer risk by age 30 years and over their lifetime, knowledge of recommended screening, and level of psychological distress. Eligible participants were English speakers aged 12 to 24 years, who had 1 of 9 hereditary cancer predisposition syndromes. The primary analysis was conducted according to the intention-to-treat principle. Data were analyzed from July 21 to September 3, 2025.
Intervention
Chatbot-based intervention with cancer risk and recommended screening information tailored to each syndrome. Additional links to resource pages with chat summary content (learn), recommended age-based screening (plan), guidance about talking with peers (share), links to support organizations (connect), and coping and bereavement support (grow).
Main Outcomes and Measures
The primary outcome was knowledge of cancer risk. The secondary outcomes were knowledge of recommended screening and level of psychological distress.
Results
Of 798 AYAs assessed, 106 AYAs were randomized and enrolled (54 to the intervention group and 52 to the control group). Participants’ mean (SD) age was 18.3 (SD, 3.9) years, and 64% (68 of 106) were girls or women. At baseline, 38% of AYAs (20 of 52) in the control group and 52% (28 of 54) of AYAs in the intervention group had accurate knowledge of cancer risk by age 30 years. Following the clinic visit, 37% (19 of 52) of AYAs in the control group and 78% (42 of 54) in the chatbot-based intervention group had accurate knowledge, reflecting greater improvement in knowledge of cancer risk by age 30 years (OR, 3.50; 95% CI, 1.45-9.19;
P
= .005). AYAs in the intervention group had non–statistically significant improvements in knowledge of recommended screening (OR, 2.17; 95% CI, 0.85-5.59;
P
= .11) and reductions in distress compared with AYAs in the control group (distress thermometer, β = −0.50; 95% CI, −1.09 to 0.08;
P
= .09).
Conclusions and Relevance
In this randomized clinical trial, use of a chatbot-based intervention combined with a cancer predisposition clinic visit improved knowledge of cancer risk by age 30 years over a clinic visit alone, without increasing distress. Combining human interaction in the clinic with personalized, accurate electronic information can support AYAs with cancer predisposition and other serious conditions.
Trial Registration
ClinicalTrials.gov Identifier:
NCT04323774