Integrating Genetics and Genomics in GYN Patient Navigation

Any woman, upon receiving news of an inherited form of gynecologic cancer, may be justified in feeling that she faces a form of double-jeopardy—not only a cancer diagnosis but one that may place her family at a higher-than-average risk of a potentially deadly disease.

Enter the oncology nurse navigator, a professional designation new enough that its core competencies are still under development, but who can draw on genetic and genomic competencies for which all nurses are responsible. Essential competencies in genetics/genomics were only recently defined for the baccalaureate-level nurse by the American Nurses Association (ANA) in 2005 and for nurses with graduate degrees in 2012.

Still, cancer centers are responding to a need made manifest by advances in the sciences of genetics/ genomics, the availability of precise genetic testing and the ongoing development of new targeted therapies.

Fox Chase Cancer Center (FCCC) in Philadelphia and Northside Hospital Cancer Institute in Atlanta have established model oncology nurse navigator programs with integrated processes for assessment, identification, referral, education, care, and support for patients whose gynecologic cancers may be genetically-based.

The Fox Chase GYN navigation program was piloted at the end of 2010 with one nurse navigator in a part-time role. That role was expanded to a full-time position about 1 year later, and a second navigator was added in 2013 to manage/navigate a volume of 70 to 90 new patients each month, according to Carol Cherry, MSN, RN, AOCNS, APNG, and herself a GYN oncology nurse navigator there.

A map of the interface among healthcare professionals at FCCC reveals the complexity of navigating care for a GYN cancer patient. At FCCC, the GYN oncology nurse navigator functions within a service line model that includes dedicated gynecologic oncology surgeons, medical oncologists, radiation oncologists, nurse practitioners, RNs, nursing aides, surgical, medical, and radiation oncology fellows, social workers, GYN-focused clinical trials staff, an RN administrator from the Women’s Cancer Center, a risk assessment RN, and a GYN pathologist.

The FCCC program has measured its success by recognized metrics, and it has been shown to be worth the investment of time and resources (Box).

Cherry explained the opportunities to incorporate genetics/genomics in the navigator role. These include:

• Recognizing family history red flags and alerting clinical staff.
• Educating patients and families.
• Facilitating referral to Clinical Genetics at the hospital prior to or in conjunction with the GYN appointment.
• Tracking results of microsatellite instability analysis and immunohistochemistry (IHC) of endometrial tumors.
• Meeting patients in the clinic as needed following endometrial tumor testing.

New at FCCC, as of 2011, is a universal Lynch Syndrome screening strategy. All new patients with surgically resected or biopsied endometrial and colorectal cancers receive IHC as the primary mismatch repair (MMR) screen. If IHC shows a loss of PMS2, MSH2, and/or MSH6, patients are referred for genetic counseling. The navigator, whose background includes working in Clinical Genetics, helps facilitate referrals.

Penny Daugherty, RN, MS, OCN, oncology nurse navigator at Northside Hospital Cancer Institute, emphasized the role of patient support and partnership. This support begins early. Upon a patient’s first learning of a genetically-based cancer, she said, “what’s important is to quell panic,” and to “partner with the patient in reestablishing a sense of control.”

Another early step in the caregiving provided by the nurse navigator is to assess the readiness of the patient to accept and process information about genetic counseling—all the while maintaining an acute awareness of signs of distress. During a conversation with the patient and perhaps loved ones, Daugherty said (and demonstrated in a sample dialogue), “…maintain an awareness of the patient’s body language, especially indicators of fear, resistance, or avoidance” and provide reassurance.

Before concluding this first meeting, Northside nurse navigator/genetics counselors offer patients a FAQ sheet with a pen and notes page, along with instructions to read and jot down questions or comments, which, as the counselor explains, “…we will explore at the next meeting,” giving the patient the comfort of knowing they have another opportunity to speak, and to form questions, once the edge of panic subsides.

Success of the Oncology Nurse Navigation at Fox Chase Cancer Center

↓ time to first appointment

↑ patient satisfaction

↑ retention rate

↓ fear and anxiety at first appointment

Throughout the care continuum, Daugherty advised her colleagues, “maintain availability”—be reachable for questions such as the meaning and consequences of genetic testing. For BRCA mutation— positive patients, she added, nurses should provide information about poly (ADP-ribose) polymerase (PARP) and the promise of PARP inhibitors, which are undergoing clinical trials in individuals with BRCA1/BRCA2 mutations.