Factors Associated with Adherence to Risk Management for Women with a BRCA Mutation

November 2018 Vol 9, NO 11
Kathryn A. Pratt, BSN, RN, OCN, CBCN
Harold C. Simmons Comprehensive Cancer Center
University of Texas Southwestern Medical Center
Dallas, TX
Jillian Huang, MS, MPH, CGC
Harold C. Simmons Comprehensive Cancer Center
University of Texas Southwestern Medical Center
Dallas, TX

Background: Individuals with hereditary breast and ovarian cancer syndrome (HBOC), caused by mutations in BRCA1 and BRCA2, have some of the highest cancer incidences of any known group. Cancer risk can be mitigated through surveillance or prophylactic surgeries. The National Comprehensive Cancer Network (NCCN) has established risk management guidelines for mutation-positive patients.1 There is a variable uptake of risk-reducing strategies among patients. We are using a genetic nurse navigator (GNN) to help patients address barriers to compliance. Identifying factors associated with noncompliance is important to direct efforts to improve adherence to management guidelines. Simmons’ multisite cancer genetics program has identified over 1200 BRCA mutations since its inception in 1992. Currently, 32% of our patient population is uninsured/underserved. We previously measured uptake of NCCN-recommended surveillance compliance in our uninsured/underserved and insured mutation-carrier patient populations.2 We are examining these data further with updated patient numbers and to discern if certain factors are associated with compliance.

Objectives: Identify associations between patient characteristics and adherence to management guidelines in a BRCA1/2 underserved/uninsured patient population in the north Texas area to direct efforts to improve adherence to management guidelines genetic nurse navigation.

Methods: We performed a retrospective chart analysis of 182 patients with HBOC identified from 2010 to 2017 to ascertain compliance with 2017 NCCN recommendations. Descriptive statistics were calculated for demographic factors (age, race/ethnicity, place of residence, insurance status), personal and family cancer history, family history of genetic testing, and BRCA1/2 status. Bivariate analyses were used to ascertain associations between patient characteristics and adherence to management guidelines.

Results: For the 182 patients included, 129 (70%) were in compliance with NCCN recommendations. For patients opting for risk-reducing surgeries, 104 (57.2%) had a bilateral mastectomy, and 109 (59.9%) had a bilateral salpingo-oophorectomy. An additional 27 (14.8%) patients opted for breast cancer surveillance, and an additional 18 (9.9%) were undergoing ovarian cancer surveillance. Of the demographic and clinical factors analyzed, only BRCA1-positive status, insurance status, and a personal history of cancer were associated with increased compliance. We plan to use this information to perform a multivariate logistic regression of factors affecting compliance on these patients, as well as additional BRCA1/2 patients reviewed since initial analysis.

Conclusion: The introduction of a GNN has already demonstrated a positive effect on improving compliance in our underserved/uninsured mutation carriers. Additional gains may be made by evaluating specific factors that may influence patient adherence to recommended increased surveillance and risk-reducing interventions.


  1. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines). Genetic/Familial High-Risk Assessment: Breast and Ovarian. Version 1.2018. www.nccn.org/professionals/physician_gls/pdf/genetics_screening.pdf.
  2. Robinson LS, Hendrix A, Xie XJ, et al. Prediction of cancer prevention: from mammogram screening to identification of BRCA1/2 mutation carriers in underserved populations. EBioMedicine. 2015;2:1827-1833.
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