Journal of Genetic Counseling

, Volume 18, Issue 3, pp 229–238 | Cite as

Pancreatic Cancer Surveillance Among High-Risk Populations: Knowledge and Intent

  • Zoe K. LewisEmail author
  • Caren J. Frost
  • Vickie L. Venne
Original Research


Pancreatic cancer is the fourth most common cancer in both men and women in the United States. It has the lowest survival rate of all cancers, largely due to the presence of non-specific symptoms, leading to diagnosis at advanced stages. While the majority of cases of pancreatic cancer are sporadic, up to 10% may be associated with an inherited predisposition. Currently, there is no standard screening protocol for pancreatic cancer, although this will change in the future as technology improves. Additionally, there is little information regarding the perceptions and intent to screen for pancreatic cancer among those with an increased risk due to a hereditary cancer predisposition syndrome, which was the objective of this study. Focus groups and individual telephone interviews were conducted, with questions focused on knowledge about pancreatic cancer and screening, perceived motivators, and perceived barriers related to each of the screening techniques currently available. Participants were recruited from the High Risk Breast Cancer and Pancreatic Cancer Registries at Huntsman Cancer Institute. The findings of this study indicated that individuals from these high-risk groups have low knowledge levels of pancreatic cancer screening, despite their desire for this information. Motivation to undergo a particular screening technique is related to whether the test is recommended by a physician, cost, degree of invasiveness, and comfort level. This information is useful to genetics professionals who counsel at-risk individuals, physicians who formulate patient care plans, and translational researchers who are developing pancreatic screening methods.


Pancreatic cancer Pancreatic cancer screening Screening uptake Motivators Barriers The Health Belief Model 



This manuscript is based on a research project conducted by Zoe Lewis to fulfill the requirements of the University of Utah Master’s Degree in Genetic Counseling. Financial support was provided by a grant from the Huntsman Cancer Institute Pancreatic Cancer Research Program; the Huntsman Cancer Foundation, which funds the genetic counseling core at Huntsman Cancer Institute; and a grant from the University of Utah Graduate Program in Genetic Counseling. The authors would like to thank the following individuals for their contributions to this study: Tom Conner, Nicole Oman, and Elynn Beck for their assistance in recruiting study participants; Emogene Grundvig for assisting with the focus groups; and Heidi Slack for assisting with transcription.

Conflict of Interest

The authors indicate no potential conflicts of interest.


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Copyright information

© National Society of Genetic Counselors, Inc. 2009

Authors and Affiliations

  • Zoe K. Lewis
    • 1
    • 3
    • 4
    Email author
  • Caren J. Frost
    • 2
  • Vickie L. Venne
    • 1
  1. 1.Huntsman Cancer InstituteUniversity of UtahSalt LakeUSA
  2. 2.CSW Social Research Institute, College of Social WorkUniversity of UtahSalt LakeUSA
  3. 3.College of Human GeneticsUniversity of UtahSalt LakeUSA
  4. 4.Salt LakeUSA

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