title: Patient experiences living with pancreatic cancer risk.
abstract: BACKGROUND
  Pancreatic 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.
  
  
  OBJECTIVE
  To understand the meaning and experience of living with familial PancCa risk and to explore experiences related to screening and prevention of PancCa.
  
  
  METHODS
  Participants 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.
  
  
  RESULTS
  Nineteen 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.
  Study 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.
authors.affiliation: Dana-Farber Cancer Institute, Boston, MA USA.
authors.forename: Meghan
authors.initials: M
authors.lastname: Underhill
authors.affiliation: Dana-Farber Cancer Institute, Boston, MA USA.
authors.forename: Donna
authors.initials: D
authors.lastname: Berry
authors.affiliation: Ambry Genetics, (previously Dana-Farber Cancer Institute), Boston, MA USA.
authors.forename: Emily
authors.initials: E
authors.lastname: Dalton
authors.affiliation: Dana-Farber Cancer Institute, Boston, MA USA.
authors.forename: Jaclyn
authors.initials: J
authors.lastname: Schienda
authors.affiliation: Dana-Farber Cancer Institute, Boston, MA USA.
authors.forename: Sapna
authors.initials: S
authors.lastname: Syngal
keywords: Pancreatic cancer risk; Patient reported experience; Qualitative research