Background: Pancreatic cancer (PancCa) is recognized as a component of many well-described hereditary cancer\nsyndromes. Minimal research has focused on patient needs and experiences living with this risk.\nPurpose: To understand the meaning and experience of living with familial PancCa risk and to explore experiences\nrelated to screening and prevention of PancCa.\nMethods: Participants underwent semi-structured, in-depth interviews. Adults without PancCa and who met familial\nor hereditary risk criteria were eligible. Thematic analysis was completed on the transcripts in order to identify patterns,\nconsistencies, and differences. Narrative review of existing literature related to women living with hereditary breast and\novarian cancer (HBOC) risk was completed to explore similarities and differences between published findings and\nour current findings.\nResults: Nineteen individuals (9 male, 10 female) participated. Major themes addressed participants� family\nexperiences with PancCa and PancCa death and the associated grief from the experiences. Family experiences\nimpacted how participants interpreted and approached their own cancer risk and participated in the cancer\nscreening program. Participants wanted to control their cancer risk and sought information and resources to\nprevent PancCa or PancCa related death. Distress related to risk was not described as constant but occurred\naround salient time points.\nConclusion & future implications: Study results begin to describe the lived experience of individuals with\nPancCa risk. Through this research we have uncovered important variables to further understand, measure, and\nintervene upon in future research. Distress related to risk was not described as ongoing, but occurred around\nspecific and salient time points that brought risk to the forefront. Individuals with familial PancCa risk may have a\nunique experience compared to other hereditary cancer syndromes due to the high mortality of the disease and\nuncertainty related to prevention and early detection outcomes.
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