The Establishment of a Pancreatic Cancer Familial Risk Assessment Program

Background: Pancreatic cancer is predicted to become the second leading cause of cancer-related death in the United States by 2020.¹ Due to the lack of effective medical treatments for the most common type, pancreatic ductal adenocarcinoma (PDAC), early detection is imperative in treating the disease.

Objective: To establish a process by which patients with a familial risk for PDAC are enrolled in the Pancreatic Cancer Familial Risk Assessment (PCFRA) program for the early detection of PDAC, providing better patient outcomes.

Method: To establish this process, a nurse navigator (NN) worked with a multidisciplinary team (MDT) of surgical/medical oncologists, billing specialists, and genetic counselors to establish the process for referral and screening for PCFRA. To qualify for enrollment, patients must be asymptomatic and have a first-degree relative with PDAC, multiple cancers, or multiple family members with PDAC. Patients are referred via self, genetic counselor, or physician to patient navigation for entry into the PCFRA program.

Result: Patients are referred to an NN, who enters patient information into a database, provides cost estimates and/or codes for potential insurance coverage and ongoing follow-up. After eligibility is determined and the patient agrees, the NN routes the referral to the PCFRA Medical Director, who orders appropriate genetic counseling and genetic testing (GT). When GT results are available, the NN initiates a patient consult with the physician, who confirms risk status and assigns a personalized assessment strategy based on GT results. Individuals determined to be of moderate or high risk will undergo initial evaluation by diagnostic imaging and serum-based testing. Patients enrolled in PCFRA are presented at pancreas MDT conferences that include radiologists, medical and surgical oncologists, gastroenterologists, and pathologists to determine the action plan for each patient based on scans and blood work. The recommendations of the pancreas MDT will be conveyed to the patient by the physician. The NN follows up for additional patient support and coordination of subsequent appointments. To date, approximately 75 patients have been referred to the PCFRA.

Conclusion: While the PCFRA remains in its infancy, the program is beneficial for early detection of PDAC. The program has increased awareness of familial PDAC risks due to genetic mutations and communication among family members concerning these risks. The option of this PCFRA program may offer patients a sense of control in prevention and early detection of PDAC.

Reference

1. National Cancer Institute. SEER Stat Fact Sheets: Pancreas Cancer. http://seer.cancer.gov/statfacts/html/pancreas.html. 2016.