Genetic Risk Assessment for Cancer Education and Empowerment (GRACE)

Cancer genetic risk assessment (CGRA) is recommended for all women diagnosed with high-risk breast cancer or ovarian cancer. In 2024, there will be 19,680 new cases of ovarian cancer, and an estimated 12,740 people will die of this disease. According to 2024 estimates, there will also be 310,620 new cases of breast cancer and 42,250 related deaths. 

For women with these cancers, knowing whether their cancer is related to an inherited harmful genetic change may help determine the optimal treatment and provide information about their risk of other cancers. This information may also be important to their blood relatives who can learn more about and manage their own cancer risk. 

Despite the current recommendations for CGRA, many patients are underutilizing genetic testing, with the lowest utilization rates among minority, rural, and other underserved populations. This represents a lost opportunity to identify families with pathogenic variants in cancer risk genes and prevent new cancers. Interventions are needed to increase the reach of CGRA among women diagnosed with ovarian cancer or high-risk breast cancer.

The Genetic Risk Assessment for Cancer Education and Empowerment (GRACE) is a multi-component program that aims to increase uptake of CGRA among high-risk breast cancer or ovarian cancer survivors. Based on behavior change theories, the intervention uses risk communication and motivational strategies to increase commitment to obtain CGRA. The intervention, delivered remotely over approximately 8 weeks by coaches trained in motivational interviewing, includes the following components:

-- Educational brochure: An educational brochure provides information on hereditary breast and ovarian cancers (HBOCs) and addresses common questions about CGRA. The brochure also provides state-specific information about where to access clinical cancer genetic services. 
-- Visual aid: The visual aid includes information about HBOC risk, a decision guide to help the participant make an informed decision about accessing CGRA, and an action plan template. 
-- Phone-based counseling: A health coach trained in motivational interviewing techniques conducts a call with the participant, guiding her through the mailed visual aid and helping her create an action plan for obtaining genetic counseling. The health coach follows an intervention manual when leading the session and uses a brief motivational interviewing form to code the session. The form also includes tips for motivational interviewing intended to improve clinical skill in the practice.
-- Summary letter: As a follow-up to the phone-based counseling, the participant receives a tailored letter that summarizes key intervention targets, the action plan, and navigation strategies discussed during the call.
-- Health care provider letter: With the participant’s permission, a letter is sent to her physician stating that the participant met the referral criteria for CGRA. The letter is sent with a copy of the patient’s summary letter.
-- Action plan reminder card: Six weeks after the initial call, a brief card is sent to the participant reminding her of her action plan.
-- Follow-up phone call: Seven weeks after the initial call, the participant receives a follow-up call assessing the need for additional assistance or genetic counseling navigation.

-- 30 to 45 minutes to complete the phone-based counseling
-- 10 to 20 minutes to complete the follow-up phone call
-- 5 to 10 minutes total to send out an educational brochure, visual aid, summary letter, health care provider letter, and action plan reminder card

The intervention is intended for women who have been previously diagnosed with ovarian cancer or high-risk breast cancer and completed primary treatment.

The program is suitable for implementation in the home.

Required resources to implement the program include the following:
-- Tailored counseling and navigation intervention manual
-- Patient educational brochure
-- Brief motivational interviewing form
-- Visual aid
-- Patient-tailored letter template
-- Action plan reminder card
-- Physician letter template

For costs associated with this program, click on Contact the Program Developer on the Program Materials page.

A randomized controlled trial was conducted with high-risk breast cancer or ovarian cancer survivors from three statewide cancer registries in Colorado, New Jersey, and New Mexico. Participants were randomly assigned to one of three groups: the GRACE group (n=220); the educational brochure group (n=225), which received the same educational brochure given to the GRACE group; or the usual care group (n=223). 

Participants were eligible if they were women diagnosed with breast cancer by 50 years of age, triple-negative breast cancer by 60 years of age, and/or two or more primary breast cancers. Women with epithelial ovarian, peritoneal, and/or fallopian tube cancer were also eligible. Other eligibility requirements included being at least 21 years old; residing in Colorado, New Jersey, or New Mexico at the time of enrollment; and being able to read and speak English and/or Spanish fluently. Women were excluded if they reported prior genetic counseling or testing, were unable to give informed consent, or did not have access to a telephone.

The average age of participants was 61.1 years old; 60% were White, 25% were Hispanic, 6% were Black, and 8% were "other." 

The primary outcome was receipt of CGRA at 6 months based on self-report and verification by medical record. Participants completed surveys online or by telephone at baseline and 1 month and 6 months after the intervention (or, in the case of the usual care group, after random assignment).

• At 6 months, a higher percentage of women in the GRACE group received CGRA (18.7%) than in the educational brochure group (3.0%; p<.0001) or usual care group (2.5%; p<.0001). There was no significant difference in CGRA uptake between the educational brochure and usual care groups.