Patient experiences living with pancreatic cancer risk

Abstract

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.

Relationship between individual and family characteristics and psychosocial factors in persons with familial pancreatic cancer

“…The items were summated into a total score. One additional item generated from preliminary qualitative research was included that asked, “When do you tend to worry about pancreatic cancer?” and participants could check all that apply (specified in Table ).…”

“…Self‐reported demographic items included personal cancer history, gender, marital status, highest level of education, household income, experience caring for a person with pancreatic cancer, experience caring for a person dying of pancreatic cancer, and experience taking care of others with cancer. Self‐reported patient psychosocial experiences were measured using validated measures and with items derived from previous qualitative research conducted by the study team …”

Advances in Hereditary Colorectal and Pancreatic Cancers

“…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.…”

“…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. Pancreatic cancer was considered a fatal disease 112 and therefore screening was viewed as a potential way to catch cancer early.…”

“…Pancreatic cancer was considered a fatal disease 112 and therefore screening was viewed as a potential way to catch cancer early. 111 Participants had limited knowledge about the pancreas, pancreatic cancer, and screening, 112 and overall felt there was a lack of patient centered resources. 111 More work is needed to understand why a small subset of individuals do have clinically meaningful distress, the impact of having abnormal surveillance results, and how to best intervene to support patients engaging in this process of risk assessment and screening.…”