Factors influencing receptivity to future screening options for pancreatic cancer in those with and without pancreatic cancer family history

Breitkopf, Carmen Radecki; Sinicrope, Pamela S.; Rabe, Kari G.; Brockman, Tabetha A.; Patten, Christi A.; McWilliams, Robert R.; Ehlers, Shawna L.; Petersen, Gloria M.

doi:10.1186/1897-4287-10-8

Cited by 18 publications

(20 citation statements)

References 41 publications

(39 reference statements)

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“…Within this sample, participants described a psychosocial response to living with familial pancreatic cancer risk, such as worry and fear, which has been reported in previous literature [ 24 ]. These psychological responses were not constant, occurred over the course of the individual’s life, and were present during times that caused the person to remember familial experiences with PancCa.…”

Section: Discussionmentioning

confidence: 99%

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Patient experiences living with pancreatic cancer risk

Underhill

Berry

Dalton

et al. 2015

Hered Cancer Clin Pract

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BackgroundPancreatic cancer (PancCa) is recognized as a component of many well-described hereditary cancer syndromes. Minimal research has focused on patient needs and experiences living with this risk.PurposeTo understand the meaning and experience of living with familial PancCa risk and to explore experiences related to screening and prevention of PancCa.MethodsParticipants underwent semi-structured, in-depth interviews. Adults without PancCa and who met familial or hereditary risk criteria were eligible. Thematic analysis was completed on the transcripts in order to identify patterns, consistencies, and differences. Narrative review of existing literature related to women living with hereditary breast and ovarian cancer (HBOC) risk was completed to explore similarities and differences between published findings and our current findings.ResultsNineteen individuals (9 male, 10 female) participated. Major themes addressed participants’ family experiences with PancCa and PancCa death and the associated grief from the experiences. Family experiences impacted how participants interpreted and approached their own cancer risk and participated in the cancer screening program. Participants wanted to control their cancer risk and sought information and resources to prevent PancCa or PancCa related death. Distress related to risk was not described as constant but occurred around salient time points.Conclusion & future implicationsStudy results begin to describe the lived experience of individuals with PancCa risk. Through this research we have uncovered important variables to further understand, measure, and intervene upon in future research. Distress related to risk was not described as ongoing, but occurred around specific and salient time points that brought risk to the forefront. Individuals with familial PancCa risk may have a unique experience compared to other hereditary cancer syndromes due to the high mortality of the disease and uncertainty related to prevention and early detection outcomes.

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Section: Discussionmentioning

confidence: 99%

“…Previous literature supports that at risk individuals are willing to take part in pancreatic cancer risk reduction and screening interventions [ 24 ], [ 26 ]. Our findings present background as to why participants may be receptive to these interventions and demonstrate the salience of family experience on influencing health choices.…”

Section: Discussionmentioning

confidence: 99%

Patient experiences living with pancreatic cancer risk

Underhill

Berry

Dalton

et al. 2015

Hered Cancer Clin Pract

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“…Screening participants who are FPC kindred commonly express grief from the experience of family death due to PC[ 128 - 130 ], and are distressed by the high mortality and uncertainty related to prevention and early detection[ 128 ]. Their motivation for participating in surveillance is " possible early detection of (a precursor stage of) PC " (95%-100%)[ 131 ], and they want to control their cancer risk by seeking information and resources to prevent PC[ 128 ].…”

Section: Surveillance Of High Risk Individualsmentioning

confidence: 99%

“…Their motivation for participating in surveillance is " possible early detection of (a precursor stage of) PC " (95%-100%)[ 131 ], and they want to control their cancer risk by seeking information and resources to prevent PC[ 128 ]. Research conducted by the Mayo Clinic indicated that 67% (238/361) of FPC kindred felt they had a higher lifetime risk of PC when compared to people of the same age, race, and gender, and 95% were likely to undergo blood test surveillance and 75% were likely to undergo EUS surveillance[ 130 ]. A study at the University of Toronto revealed that the perception of PC risk was higher in FPC kindred than in BRCA2 mutation carriers (42% vs 15%)[ 129 ].…”

Section: Surveillance Of High Risk Individualsmentioning

confidence: 99%

Familial pancreatic cancer: Concept, management and issues

Matsubayashi

Takaori

Morizane

et al. 2017

WJG

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Familial pancreatic cancer (FPC) is broadly defined as two first-degree-relatives with pancreatic cancer (PC) and accounts for 4%-10% of PC. Several genetic syndromes, including Peutz-Jeghers syndrome, hereditary pancreatitis, hereditary breast-ovarian cancer syndrome (HBOC), Lynch syndrome, and familial adenomatous polyposis (FAP), also have increased risks of PC, but the narrowest definition of FPC excludes these known syndromes. When compared with other familial tumors, proven genetic alterations are limited to a small proportion (< 20%) and the familial aggregation is usually modest. However, an ethnic deviation (Ashkenazi Jewish > Caucasian) and a younger onset are common also in FPC. In European countries, “anticipation” is reported in FPC families, as with other hereditary syndromes; a trend toward younger age and worse prognosis is recognized in the late years. The resected pancreases of FPC kindred often show multiple pancreatic intraepithelial neoplasia (PanIN) foci, with various K-ras mutations, similar to colorectal polyposis seen in the FAP patients. As with HBOC patients, a patient who is a BRCA mutation carrier with unresectable pancreatic cancer (accounting for 0%-19% of FPC patients) demonstrated better outcome following platinum and Poly (ADP-ribose) polymerase inhibitor treatment. Western countries have established FPC registries since the 1990s and several surveillance projects for high-risk individuals are now ongoing to detect early PCs. Improvement in lifestyle habits, including non-smoking, is recommended for individuals at risk. In Japan, the FPC study group was initiated in 2013 and the Japanese FPC registry was established in 2014 by the Japan Pancreas Society.

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“…Additional studies have been performed to evaluate the overall experience reported by individuals living with the knowledge that they are at increased risk of pancreatic cancer, 106,111 their knowledge of pancreatic cancer screening, 112 and their receptivity 113 or intent to engage in pancreatic cancer screening. Two qualitative studies focusing on patient experiences with pancreatic cancer risk 111 and understanding of and intent to engage in pancreatic cancer screening 112 found the family experience was an important factor in how someone viewed their own risk for pancreatic cancer and became motivated to engage in invasive screening.…”

Section: Hereditary/familial Pancreatic Cancermentioning

confidence: 99%

Advances in Hereditary Colorectal and Pancreatic Cancers

Underhill

Germansky

Yurgelun

2016

Clinical Therapeutics

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Purpose Innovations in genetic medicine have lead to improvements in the early detection, prevention, and treatment of cancer for patients with inherited risks of gastrointestinal cancer, particularly hereditary colorectal cancer and hereditary pancreatic cancer. Methods This review provides an update on recent data and key advances that have improved the identification, understanding, and management of patients with hereditary colorectal cancer and hereditary pancreatic cancer. Findings This review details recent and emerging data that highlight the developing landscape of genetics in hereditary colorectal and pancreatic cancer risk. A summary is provided of the current state-of-the-art practices for identifying, evaluating, and managing patients with suspected hereditary colorectal cancer and pancreatic cancer risk. The impact of next-generation sequencing technologies in the clinical diagnosis of hereditary gastrointestinal cancer and also in discovery efforts of novel genes linked to familial cancer risk are discussed. Emerging targeted therapies that may play a particularly important role in the treatment of patients with hereditary forms of colorectal cancer and pancreatic cancer are also reviewed. Current approaches for pancreatic cancer screening and the psychosocial impact of such procedures are also detailed. Implications Given the availability of novel diagnostic, risk-reducing, and therapeutic strategies that exist for patients with hereditary risk for colorectal or pancreatic cancer, it is imperative that clinicians be vigilant about evaluating patients for hereditary cancer syndromes. Continuing to advance genetics research in hereditary gastrointestinal cancers will allow for more progress to be made in personalized medicine and prevention.

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Factors influencing receptivity to future screening options for pancreatic cancer in those with and without pancreatic cancer family history

Cited by 18 publications

References 41 publications

Patient experiences living with pancreatic cancer risk

Patient experiences living with pancreatic cancer risk

Familial pancreatic cancer: Concept, management and issues

Advances in Hereditary Colorectal and Pancreatic Cancers

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