Impact of Genetic Patient Navigation to Facilitate Hereditary Mutation Carriers Comply with NCCN Management Guide

November 2019 Vol 10, No 11
Kathryn A. Pratt, BSN, RN, OCN, CBCN
Harold C. Simmons Comprehensive Cancer Center
University of Texas Southwestern Medical Center
Dallas, TX

Background: Hereditary breast and ovarian cancer syndrome and Lynch syndrome (HBOC/LS) are the 2 most common inherited cancer predisposition syndromes. Individuals carrying mutations in associated genes have some of the highest cancer incidence of any known group. The multisite cancer genetics program at UT Southwestern (UTSW) has identified over 3400 mutation carriers in its history. The National Comprehensive Cancer Network (NCCN) has established cancer risk management guidelines for mutation-positive patients and for cancer survivorship. Patient navigation has been shown to reduce barriers to care that often prevent compliance to recommended guidelines. Often, nongenetic healthcare providers (HCPs) have low genetic health literacy, which may also provide barriers to care.

Objectives: Thirty-two percent of our patient population is uninsured/underserved. Through a grant received from the Cancer Prevention and Research Institute of Texas, our program implemented a genetic patient navigator (GPN) to provide direct patient assistance to increase patient compliance and healthy lifestyle promotion, with a focus on the underserved population. We describe here the utilization of a GPN on surveillance compliance and lifestyle practices among underserved/uninsured and insured HBOC and LS mutation carriers within the UTSW clinics. We also provided professional education services to improve genetic health literacy among nongenetic HCPs.

Methods: The GPN contacted HBOC/LS probands to ascertain follow-up information regarding cancer risk reduction and evaluation of lifestyle factors/social support barriers. The GPN educated patients about their particular risks and facilitated specialist referrals, provided lifestyle factor counseling, and made referrals to a previvorship program. The GPN recorded identified at-risk relatives per proband and provided education to promote testing. The GPN participated in provider outreach on hereditary patient management. Data were tracked using the CancerGene Connect navigation tool and Excel database.

Results: In 24 months, the GPN completed 62 public education services, with 578 people educated; 436 people were navigated to 431 services across 24 counties. Survivorship services were scheduled/received by 51 people; 92 people improved their health behaviors, and 64 received a physician referral. A total of 2357 professionals were educated via 16 professional outreach events in 25 counties. The cascade testing ratio for family members improved from 1.0 to 2.3. Issues encountered: Privacy issues relating to deceased patients; patients frequently not returning calls; frequent out-of-date phone numbers in the underserved population; and an overall lower number of patients contacted than expected due to the greater time commitment needed than initially anticipated. We have developed an online and paper compliance survey to send out to approximately 1200 patients for whom we have compiled an e-mail database. We anticipate increased patient connections using this alternative method of communication.

Conclusion: The introduction of a GPN intervention has been instrumental in identifying and addressing barriers to care in this high-risk patient population. The GPN educated these high-risk patients on the crucial need to follow NCCN management guidelines for cancer prevention and early detection, which in turn improved their likelihood of increasing compliance. Due to the dominant pattern of inheritance, it is vital to identify at-risk family members and direct them to genetic counseling/testing. Heightened genetic health literacy of HCPs can lead to increased patient compliance through targeted education.


  1. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines). Genetic/Familial High-Risk Assessment: Breast and Ovarian. Version 2.2019. July 30, 2018.
  2. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines). Genetic/Familial High-Risk Assessment: Colorectal. Version 1.2018. July 12, 2018.
  3. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines). Survivorship. Version 2.2018. September 24, 2018.
  4. Pal T, Cragun D, Lewis C, et al. A statewide survey of practitioners to assess knowledge and clinical practices regarding hereditary breast and ovarian cancer. Genet Test Mol Biomarkers. 2013;17:367-375.
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