Pancreatic Cancer Surveillance Among High-Risk Populations: Knowledge and Intent
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ORIGINAL RESEARCH
Pancreatic Cancer Surveillance Among High-Risk Populations: Knowledge and Intent Zoe K. Lewis & Caren J. Frost & Vickie L. Venne
Received: 19 June 2008 / Accepted: 18 November 2008 / Published online: 5 March 2009 # National Society of Genetic Counselors, Inc. 2009
Abstract 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 Z. K. Lewis : V. L. Venne Huntsman Cancer Institute, University of Utah, Salt Lake, UT, USA C. J. Frost CSW Social Research Institute, College of Social Work, University of Utah, Salt Lake, UT, USA Z. K. Lewis College of Human Genetics, University of Utah, Salt Lake, UT, USA Z. K. Lewis (*) 320 Wakara Way, B3-154, Salt Lake, UT 84108, USA e-mail: [email protected]
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. Keywords Pancreatic cancer . Pancreatic cancer screening . Screening uptake . Motivators . Barriers . The Health Belief Model
Introduction Pancreatic cancer is the fourth most common cancer in both men and women in the United States. In 2007, an estimated 37,000 new cases will be diagnosed in this country alone, and 33,000 deaths will result from pancreatic cancer (Jemal et al. 2007). A lack of symptoms, or non-specific symptoms in its early stages, contributes to the dismal prognosis among those diagnosed with pancreatic cancer. In fact, it has the lowest 5-year survival rate of all cancers (Jemal et al. 2007; Ries et al. 2006). Other factors that contribute to the high mortality rate associated with pancreatic cancer are a l
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