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

Huntsman Cancer Institute, University of Utah, Salt Lake, UT, USA.
Journal of Genetic Counseling (Impact Factor: 1.75). 04/2009; 18(3):229-38. DOI: 10.1007/s10897-008-9205-9
Source: PubMed

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 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.

  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: : The success of any surveillance program depends not solely on its technological aspects but also on the commitment of participants to adhere to follow-up investigations, which is influenced by the psychological impact of surveillance. This study investigates the psychological impact of participating in a pancreatic cancer surveillance program. : High-risk individuals participating in an endoscopic ultrasonography-magnetic resonance imaging-based pancreatic cancer surveillance program received a questionnaire assessing experiences with endoscopic ultrasonography and magnetic resonance imaging, reasons to participate, psychological distress, and benefits and barriers of surveillance. High-risk individuals were individuals with a strong family history of pancreatic cancer or carriers of pancreatic cancer-prone gene mutations. : Sixty-nine participants (85%) completed the questionnaire. Surveillance was reported as "very to extremely uncomfortable" by 15% for magnetic resonance imaging and 14% for endoscopic ultrasonography. Most reported reason to participate was that pancreatic cancer might be detected in a curable stage. Abnormalities were detected in 27 respondents, resulting in surgical resection in one individual and a shorter follow-up interval in five individuals. Surveillance outcomes did not influence cancer worries. Overall, 29% was "often" or "almost always" concerned about developing cancer. Six respondents (9%) had clinical levels of depression and/or anxiety. According to 88% of respondents, advantages of surveillance outweighed disadvantages. : Although endoscopic ultrasonography is more invasive than magnetic resonance imaging, endoscopic ultrasonography was not perceived as more burdensome. Despite one third of respondents worrying frequently about cancer, this was not related to the surveillance outcomes. Anxiety and depression levels were comparable with the general population norms. Advantages of participation outweighed disadvantages according to the majority of respondents. From a psychological point of view, pancreatic cancer surveillance in high-risk individuals is feasible and justified.
    Genetics in medicine: official journal of the American College of Medical Genetics 08/2011; 13(12):1015-24. DOI:10.1097/GIM.0b013e31822934f5 · 6.44 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: Pancreatic cancer (PC) is a highly lethal disease. Despite advances regarding the safety and long-term results of pancreatectomies, early diagnosis remains the only hope for cure. This necessitates the implementation of an intensive screening program (based mainly on modern imaging), which - given the incidence of PC - is not cost effective for the general population. However, this screening program is recommended for individuals at high-risk for PC development. Indications for screening include the following three clinical settings: hereditary cancer predisposition syndromes associated with PC, hereditary pancreatitis and familial pancreatic cancer syndrome. The aim of this strategy is to identify pre-invasive (precursor) lesions, which are curable. Surgery is recommended in the presence of recognizable lesion on imaging lesions. Partial (anatomic) pancreatectomy - depending on the location of the suspicious lesion - is the most widely accepted type of surgical intervention in this setting; occasionally, however, total pancreatectomy may be required, in carefully selected patients. Despite that experience still remains limited, there is evidence that this aggressive strategy allows early detection of neoplastic lesions, thereby improving the effectiveness of surgery and prognosis.
    Surgical Oncology 01/2012; 21(2):e49-58. DOI:10.1016/j.suronc.2011.12.006 · 2.37 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Pancreatic cancer (PC) is considered the most lethal cancer and approximately 10% of PC is hereditary. The purpose of the study was to assess attitudes of at-risk family members with two or more relatives affected with pancreas cancer (PC) toward PC risk and future screening options. At-risk family members and primary care controls were surveyed regarding perceived PC risk, PC worry/concern, attitude toward cancer screening, screening test accuracy, and intentions regarding PC screening via blood testing or more invasive endoscopic ultrasound (EUS). PC family members reported greater perceived risk of PC than controls (54% vs. 6%, respectively, p < 0.0001). PC family members also reported higher levels of PC worry/concern than controls (p < 0.0001), although 19% of PC family members indicated they were "not at all concerned" about getting PC. PC family members indicated greater acceptance of a false-negative result on a PC screening test relative to controls (12% vs. 8%, p = 0.02). Both groups reported high (>89%) receptivity to the potential PC screening options presented, though receptivity was greater among PC family members as compared to controls (p < 0.0001) for EUS. In multivariable analyses, degree of PC concern (p < 0.0001) was associated with intention to screen for PC by blood test and EUS, while perceived PC risk was associated with likelihood of undergoing EUS only (p < 0.0001). Receptivity to screening options for PC appears high. Clinicians should address behavioral and genetic risk factors for PC and foster appropriate concern regarding PC risk among at-risk individuals.
    Hereditary Cancer in Clinical Practice 06/2012; 10(1):8. DOI:10.1186/1897-4287-10-8 · 1.71 Impact Factor
Show more