title: An investigation of the factors effecting high-risk individuals' decision-making about prophylactic total gastrectomy and surveillance for hereditary diffuse gastric cancer (HDGC).
abstract: Hereditary diffuse gastric cancer has an early onset and poor prognosis, therefore, individuals who carry a pathogenic (CDH1) mutation in the E-cadherin gene (CDH1) are offered endoscopic surveillance and advised to undergo prophylactic total gastrectomy (PTG) in their early to mid-twenties. Patients not ready or fit to undergo gastrectomy, or in whom the genetic testing result is unknown or ambiguous, are offered surveillance. Little is known about the factors that influence decisions to undergo or decline PTG, making it difficult to provide optimal support for those facing these decisions. Qualitative interviews were carried out with 35 high-risk individuals from the Familial Gastric Cancer Study in the UK. Twenty-seven had previously undergone PTG and eight had been identified as carrying a pathogenic CDH1 mutation but had declined surgery at the time of interview. The interviews explored the experience of decision-making and factors influencing risk-management decisions. The data suggest that decisions to proceed with PTG are influenced by a number of potentially competing factors: objective risk confirmation by genetic testing and/or receiving a positive biopsy; perceived familial cancer burden and associated risk perceptions; perceptions of post-surgical life; an increasing inability to tolerate endoscopic procedures; a concern that surveillance could miss a cancer developing and individual's life stage. These findings have implications for advising this patient group.
authors.affiliation: Ethox Centre, Nuffield Department of Population Health, University of Oxford, Oxford, UK. Nina.Hallowell@ethox.ox.ac.uk.
authors.forename: Nina
authors.identifier: 0000-0002-7647-8524
authors.initials: N
authors.lastname: Hallowell
authors.affiliation: PHG Foundation and Institute of Public Health, University of Cambridge, Cambridge, UK.
authors.forename: Shirlene
authors.initials: S
authors.lastname: Badger
authors.affiliation: University of Cambridge, Cambridge, UK.
authors.forename: Sue
authors.initials: S
authors.lastname: Richardson
authors.affiliation: Cambridge University Hospitals Trust, Addenbrookes Hospital, Cambridge, UK.|Cancer Research UK Cambridge Institute, University of Cambridge, Cambridge, UK.
authors.forename: Carlos
authors.initials: C
authors.lastname: Caldas
authors.affiliation: Cambridge University Hospitals Trust, Addenbrookes Hospital, Cambridge, UK.
authors.forename: Richard H
authors.initials: RH
authors.lastname: Hardwick
authors.affiliation: Cambridge University Hospitals Trust, Addenbrookes Hospital, Cambridge, UK.|MRC Cancer Unit, University of Cambridge, Cambridge, UK.
authors.forename: Rebecca C
authors.initials: RC
authors.lastname: Fitzgerald
authors.affiliation: Centre for Population Health Sciences, University of Edinburgh, Cambridge, UK.
authors.forename: Julia
authors.initials: J
authors.lastname: Lawton
mesh_terms: D000328:Adult; D015703:Antigens, CD; D001706:Biopsy; D015820:Cadherins / Q000235:genetics*; D003657:Decision Making; D005260:Female; D005743:Gastrectomy / Q000523:psychology*; D005820:Genetic Testing; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009154:Mutation; D012307:Risk Factors; D013274:Stomach Neoplasms / Q000235:genetics / Q000517:prevention & control* / Q000601:surgery*; D055815:Young Adult
chemical_list: D015703:Antigens, CD; C513384:CDH1 protein, human; D015820:Cadherins
keywords: Decision-making; E-cadherin (CDH1); Endoscopic surveillance; Hereditary diffuse gastric cancer (HDGC); Prophylactic gastrectomy; Psychosocial