Improving Uptake of Cancer Genetic Risk Assessment in a Remote Tailored Risk Communication and Navigation Intervention: Large Effect Size but Room to Grow

Abstract

Purpose: Cancer genetic risk assessment (CGRA) is recommended for women with ovarian cancer or high-risk breast cancer, yet fewer than 30% receive recommended genetic services, with the lowest rates among underserved populations. We hypothesized that compared with usual care (UC) and mailed targeted print (TP) education, CGRA uptake would be highest among women receiving a phone-based tailored risk counseling and navigation intervention (TCN).

Methods: In this three-arm randomized trial, women with ovarian or high-risk breast cancer were recruited from statewide cancer registries in Colorado, New Jersey, and New Mexico. Participants assigned to TP received a mailed educational brochure. Participants assigned to TCN received the mailed educational brochure, an initial phone-based psychoeducational session with a health coach, a follow-up letter, and a follow-up navigation phone call.

Results: Participants' average age was 61 years, 25.4% identified as Hispanic, 5.9% identified as non-Hispanic Black, and 17.5% lived in rural areas. At 6 months, more women in TCN received CGRA (18.7%) than those in TP (3%; odds ratio, 7.4; 95% CI, 3.0 to 18.3; P < .0001) or UC (2.5%; odds ratio, 8.9; 95% CI, 3.4 to 23.5; P < .0001). There were no significant differences in CGRA uptake between TP and UC. Commonly cited barriers to genetic counseling were lack of provider referral (33.7%) and cost (26.5%), whereas anticipated difficulty coping with test results (14.0%) and cost (41.2%) were barriers for genetic testing.

Conclusion: TCN increased CGRA uptake in a group of geographically and ethnically diverse high-risk breast and ovarian cancer survivors. Remote personalized interventions that incorporate evidence-based health communication and behavior change strategies may increase CGRA among women recruited from statewide cancer registries.

Trial registration: ClinicalTrials.gov NCT03326713.

FIG 1.

Graphical depiction of TP and TCN interventions. (a) Baseline survey, which captured sociodemographic information (age, rural status, etc), self-reported health status, cancer diagnosis, health literacy, number of living first degree relatives, cancer worry, perceptions of threat and efficacy, presence of a primary care provider and/or cancer care provider, history of provider CGRA recommendation, genetic counseling, genetic testing, barriers, and facilitators; (b) notification letter indicating random assignment and next steps; (c) mailed educational brochure; (d) sealed envelope of visual aids sent by mail; (e) TCN telephone session with a cancer education specialist addressing perceived hereditary breast and ovarian cancer risk, threat, response efficacy, and self-efficacy; creation of action plan to obtain CGRA; and navigation assistance to overcome specific barriers to CGRA; (f) mailed tailored summary letter of TCN telephone session and outlined the participant’s stated initial steps to getting CGRA. With the participants permission, a copy was mailed to the patient’s provider; (g) mailed tailored reminder card detailing genetic counseling and genetic testing action plan; and (h) follow-up call from cancer education specialist (for those who verbally consented to a call at the end of the initial TCN session). CGRA, cancer genetic risk assessment; HBOC, hereditary breast and ovarian cancer; TCN, tailored counseling and navigation; TP, targeted print.

FIG 2.

GRACE study CONSORT diagram. GC/GT, genetic counseling and/or testing; GRACE, Genetic Risk Assessment for Cancer Education and Empowerment; MVR, medical record verified; TCN, tailored counseling and navigation; TP, targeted print. ^aIn the intent-to-treat analysis, only participants found ineligible after random assignment were excluded.