Risk Assessment and Genetic Counseling for Hereditary Breast and Ovarian Cancer: Recommendations of the National Society of Genetic Counselors

e16510 Background: In 2010 NCCN conducted a Risk Assessment and Genetic Counseling (RA/GC) study focused on the operational aspects of RA/GC programs and services at NCCN Member Institutions (MIs). The primary aims were benchmarking of RA/GC operations and practice patterns. Methods: A survey instrument was developed by NCCN staff in consultation with RA/GC leaders at NCCN MIs. The survey collected quantitative and descriptive data on RA/GC program organization, staffing, and patient volume and also included questions on patient referral, test disclosure, and program funding. Results: 19/21 (90%) NCCN MIs participated. The mean number of patients seen annually for 17 MIs reporting data was 872 (range 130 – 2,200). The mean number of patients seen annually per 1.0 genetic counseling full-time equivalent was 272 (range 152 – 422). RA/GC services are made available to patients by scheduled appointment only at 5 MIs (26%) versus by appointment or with on-call genetic counselors at 14 MIs (74%). However, 11/19 (58%) MIs reported the time between initial patient contact and appointment was greater than 2 weeks. Self-sufficient RA/GC program funding was consistently cited by survey respondents as one of the greatest challenges, with 18 MIs indicating that they require institutional support, whereas only 11 indicated that reimbursement from third-party payors contributed to funding. Pertaining to disclosure, respondents estimated that 48% of test results were disclosed to patients via telephone and 39% in-person. The remaining disclosures were made based on patient preference. Conclusions: The availability of on-call RA/GC resources at most NCCN MIs likely indicates an effort to increase the number of patients that receive RA/GC services, but based on times to first appointment, access remains an issue. The 2011 recommendations of the National Society of Genetic Counselors state that the disclosure of test results in-person is often very helpful. However, the percentage given by telephone remains substantial. Dissemination of RA/GC benchmark data and identification of best practices will promote enhanced operations and patient access at NCCN MIs.

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Provider’s Perceptions of Barriers and Facilitators for Latinas to Participate in Genetic Cancer Risk Assessment for Hereditary Breast and Ovarian Cancer

Healthcare ◽

10.3390/healthcare6030116 ◽

2018 ◽

Vol 6 (3) ◽

pp. 116 ◽

Cited By ~ 4

Author(s):

Alejandra Hurtado-de-Mendoza ◽

Kristi Graves ◽

Sara Gómez-Trillos ◽

Lyndsay Anderson ◽

Claudia Campos ◽

...

Keyword(s):

Ovarian Cancer ◽

Risk Assessment ◽

At Risk ◽

Cancer Risk ◽

Genetic Counselors ◽

Barriers And Facilitators ◽

Cancer Risk Assessment ◽

Care Providers ◽

Latina Women ◽

Breast And Ovarian Cancer

The Comprehensive Cancer Network (NCCN) recommends genetic cancer risk assessment (GCRA) referral to women at high risk of hereditary breast and ovarian cancer. Latinas affected by breast cancer have the second highest prevalence of BRCA1/2 mutations after Ashkenazi Jews. Compared to non-Hispanic Whites, Latinas have lower GCRA uptake. While some studies have identified barriers for GCRA use in this population, few studies have focused on health care providers’ perspectives. The purpose of the study was to examine providers’ perceptions of barriers and facilitators for at-risk Latina women to participate in GCRA and their experiences providing services to this population. We conducted semi-structured interviews with 20 healthcare providers (e.g., genetic counselors, patient navigators) recruited nationally through snowballing. Interviews were transcribed. Two coders independently coded each interview and then met to reconcile the codes using Consensual Qualitative Research guidelines. Providers identified several facilitators for GCRA uptake (e.g., family, treatment/prevention decisions) and barriers (e.g., cost, referrals, awareness, stigma). Genetic counselors described important aspects to consider when working with at-risk Latina including language barriers, obtaining accurate family histories, family communication, and testing relatives who live outside the US. Findings from this study can inform future interventions to enhance uptake and quality of GCRA in at-risk Latina women to reduce disparities.

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Evaluation of a Genetic Counseling Aid for Hereditary Breast and Ovarian Cancer

Applied Clinical Research Clinical Trials and Regulatory Affairs ◽

10.2174/2213476x0202151207171635 ◽

2015 ◽

Vol 2 (2) ◽

pp. 103-109

Author(s):

Deborah Cragun ◽

Lucia Camperlengo ◽

Emily Robinson ◽

Pauleena Pal ◽

Jongphil Kim ◽

...

Keyword(s):

Ovarian Cancer ◽

Genetic Counseling ◽

Breast And Ovarian Cancer

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A Collaborative Model to Implement Flexible, Accessible and Efficient Oncogenetic Services for Hereditary Breast and Ovarian Cancer: The C-MOnGene Study

Cancers ◽

10.3390/cancers13112729 ◽

2021 ◽

Vol 13 (11) ◽

pp. 2729

Author(s):

Julie Lapointe ◽

Michel Dorval ◽

Jocelyne Chiquette ◽

Yann Joly ◽

Jason Robert Guertin ◽

...

Keyword(s):

Breast Cancer ◽

Ovarian Cancer ◽

Genetic Counseling ◽

Evidence Base ◽

Annual Number ◽

Breast And Ovarian Cancer ◽

Patient Centered ◽

Collaborative Model ◽

Counseling And Testing ◽

Number Of Patients

Medical genetic services are facing an unprecedented demand for counseling and testing for hereditary breast and ovarian cancer (HBOC) in a context of limited resources. To help resolve this issue, a collaborative oncogenetic model was recently developed and implemented at the CHU de Québec-Université Laval; Quebec; Canada. Here, we present the protocol of the C-MOnGene (Collaborative Model in OncoGenetics) study, funded to examine the context in which the model was implemented and document the lessons that can be learned to optimize the delivery of oncogenetic services. Within three years of implementation, the model allowed researchers to double the annual number of patients seen in genetic counseling. The average number of days between genetic counseling and disclosure of test results significantly decreased. Group counseling sessions improved participants’ understanding of breast cancer risk and increased knowledge of breast cancer and genetics and a large majority of them reported to be overwhelmingly satisfied with the process. These quality and performance indicators suggest this oncogenetic model offers a flexible, patient-centered and efficient genetic counseling and testing for HBOC. By identifying the critical facilitating factors and barriers, our study will provide an evidence base for organizations interested in transitioning to an oncogenetic model integrated into oncology care; including teams that are not specialized but are trained in genetics.

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Predictors of risk-reducing surgery intentions following genetic counseling for hereditary breast and ovarian cancer

Translational Behavioral Medicine ◽

10.1093/tbm/iby101 ◽

2018 ◽

Vol 10 (2) ◽

pp. 337-346 ◽

Cited By ~ 3

Author(s):

Mary Kathleen Ladd ◽

Beth N Peshkin ◽

Leigha Senter ◽

Shari Baldinger ◽

Claudine Isaacs ◽

...

Keyword(s):

Breast Cancer ◽

Ovarian Cancer ◽

Genetic Counseling ◽

Cancer Risk ◽

Prophylactic Surgery ◽

Ovarian Cancer Risk ◽

Breast And Ovarian Cancer ◽

Affective Factors ◽

Risk Reducing

Abstract Risk-reducing mastectomy (RRM) and salpingo-oophorectomy (RRSO) are increasingly used to reduce breast and ovarian cancer risk following BRCA1/BRCA2 testing. However, little is known about how genetic counseling influences decisions about these surgeries. Although previous studies have examined intentions prior to counseling, few have examined RRM and RRSO intentions in the critical window between genetic counseling and test result disclosure. Previous research has indicated that intentions at this time point predict subsequent uptake of surgery, suggesting that much decision-making has taken place prior to result disclosure. This period may be a critical time to better understand the drivers of prophylactic surgery intentions. The aim of this study was to examine predictors of RRM and RRSO intentions. We hypothesized that variables from the Health Belief Model would predict intentions, and we also examined the role of affective factors. Participants were 187 women, age 21–75, who received genetic counseling for hereditary breast and ovarian cancer. We utilized multiple logistic regression to identify independent predictors of intentions. 49.2% and 61.3% of participants reported intentions for RRM and RRSO, respectively. Variables associated with RRM intentions include: newly diagnosed with breast cancer (OR = 3.63, 95% CI = 1.20–11.04), perceived breast cancer risk (OR = 1.46, 95% CI = 1.17–1.81), perceived pros (OR = 1.79, 95% CI = 1.38–2.32) and cons of RRM (OR = 0.81, 95% CI = 0.65–0.996), and decision conflict (OR = 0.80, 95% CI = 0.66–0.98). Variables associated with RRSO intentions include: proband status (OR = 0.28, 95% CI = 0.09–0.89), perceived pros (OR = 1.35, 95% CI = 1.11–1.63) and cons of RRSO (OR = 0.72, 95% CI = 0.59–0.89), and ambiguity aversion (OR = 0.79, 95% CI = 0.65–0.95). These data provide support for the role of genetic counseling in fostering informed decisions about risk management, and suggest that the role of uncertainty should be explored further.

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Comparing Outcomes of Genetic Counseling Options in Breast and Ovarian Cancer: An Integrative Review

Oncology Nursing Forum ◽

10.1188/18.onf.96-105 ◽

2018 ◽

Vol 45 (1) ◽

pp. 96-105 ◽

Cited By ~ 12

Author(s):

Danielle Fournier ◽

Angela Bazzell ◽

Joyce Dains

Keyword(s):

Ovarian Cancer ◽

Genetic Counseling ◽

Integrative Review ◽

Breast And Ovarian Cancer

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