JMIR Publications

ABSTRACT

Background:

If a patient with cancer is identified as having a pathogenic variant, at-risk relatives are eligible for genetic testing, known as cascade testing. However, in the US, the patient is responsible for informing their family members, and only about 30% of these family members are ultimately informed and complete testing. There is a need to train patients with cancer to communicate risk information and motivate their family members to obtain genetic testing.

Objective:

This study evaluates “GRACE,” an online relational agent that trains patients with cancer to talk to their family about cancer risk, including role-play simulations that enable patients to practice communication skills.

Methods:

A quasi-experimental study was conducted with 30 crowd workers with cancer. Primary measures included 5-point pre-post self-reported intent, importance, comfort, and confidence to share genetic test information with family members, as well as knowledge of cancer genetics (KnowGene), satisfaction with (10-item satisfaction measure), and usability of (SUS) the relational agent system.

Results:

Likelihood of sharing genetic test information increased significantly pre-post from 4.43 (SD 1.04) to 4.67 (SD .66), Wilcoxon (Z=2.07, P=.038). Importance of sharing genetic test information increased significantly pre-post from 4.47 (SD .82) to 4.77 (SD .50), Wilcoxon (Z=2.46, P=.014). Comfort sharing genetic test information increased pre-post from 4.33 (SD 0.99) to 4.57 (SD 0.90), Wilcoxon (Z=1.811, P=.07). Confidence to share genetic test information increased significantly pre-post from 4.33 (SD .994) to 4.63 (SD .765), Wilcoxon (Z=2.23, P=.026). Knowledge of cancer genetics did not increase significantly (13.27 SD 1.911 to 13.7, SD 1.932, paired t(29)=1.245, P=.223). Participants gave high scores for usability (SUS score=71%) and satisfaction (6.09 SD 0.96 out of 7.0), significantly greater than neutral, t(29)=13.445, P<.001) with the relational agent system.

Conclusions:

GRACE provides communication skills training and information better enabling cancer patients to reach out to their families, and our preliminary study indicates a potential for future impact. This training allows patients to better overcome common barriers to cascade testing, including emotional burden and perceived stigma, health literacy, and communication difficulties. While results were generally positive, these findings should be interpreted with caution due to limitations in the population included in the pilot, the quasi-experimental design and small sample size. Future development should focus on larger-scale evaluation and in-depth follow-up of family communication dynamics following the use of GRACE.