ArticleHereditary cancer in clinical practice2015
Patient experiences living with pancreatic cancer risk.
Article in Hereditary cancer in clinical practice, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
11 citing papers in PubMed, 17 citations in OpenAlex.
- Psychological Distress and Quality of Life in Families With a Germline CDKN2A Pathogenic Variant.Molecular genetics & genomic medicine · 2025Article
- Familial pancreatic cancer: a case study and review of the psychosocial effects of diagnoses on families.Hereditary cancer in clinical practice · 2023Article
- Pancreatic Cancer and the Family Connection: The Role of Advanced Practitioners in Screening and Educating Genetically At-Risk Individuals.Journal of the advanced practitioner in oncology · 2023Review
- Clinical risk management of breast, ovarian, pancreatic, and prostatic cancers for BRCA1/2 variant carriers in Japan.Journal of human genetics · 2023Review
- Health Care Provider Perceptions of Caring for Individuals with Inherited Pancreatic Cancer Risk.Journal of cancer education : the official journal of the American Association for Cancer Education · 2020Article
- Health behaviours and beliefs in individuals with familial pancreatic cancer.Familial cancer · 2019Article
- Genetic counselling and personalised risk assessment in the Australian pancreatic cancer screening program.Hereditary cancer in clinical practice · 2019Article
- Relationship between individual and family characteristics and psychosocial factors in persons with familial pancreatic cancer.Psycho-oncology · 2018Article
- Familial pancreatic cancer: Concept, management and issues.World journal of gastroenterology · 2017Review
- Advances in Hereditary Colorectal and Pancreatic Cancers.Clinical therapeutics · 2016Review
- Psychological impact of pancreatic cancer screening by EUS or magnetic resonance imaging in high-risk individuals: A systematic review.Endoscopic ultrasoundReview
Corrections and comments
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Authors and funding
5 authors at 1 institution in 1 country.
Funding
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. PURPOSE: To 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 IMPLICATIONS: 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.