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An investigation of the factors effecting high-risk individuals’ decision-making about prophylactic total gastrectomy and surveillance for hereditary diffuse gastric cancer (HDGC)

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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.

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Acknowledgments

This work was funded by a grant from the Sir Halley Stewart Trust to N. H., J. L., C. C. and R. F.; we gratefully acknowledge this support. The Familial Gastric Cancer Study is funded by infrastructure grants to the Cambridge NIHR Biomedical Research Centre and the Cancer Research UK funded ECMC at the University of Cambridge. The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the National Institute for Health Research, the NHS or the Department of Health. N. H. would also like to acknowledge the support of the Fondation Brocher, Geneva, Switzerland, who hosted her while she wrote this paper. She would also like to thank the Brocher staff and other Brocher residents who made her time there so pleasant and productive. The authors would like to thank all of the individuals who so kindly participated in this research.

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Authors and Affiliations

  1. Ethox Centre, Nuffield Department of Population Health, University of Oxford, Oxford, UK

    Nina Hallowell

  2. PHG Foundation and Institute of Public Health, University of Cambridge, Cambridge, UK

    Shirlene Badger

  3. University of Cambridge, Cambridge, UK

    Sue Richardson

  4. Cambridge University Hospitals Trust, Addenbrookes Hospital, Cambridge, UK

    Carlos Caldas, Richard H. Hardwick & Rebecca C. Fitzgerald

  5. Cancer Research UK Cambridge Institute, University of Cambridge, Cambridge, UK

    Carlos Caldas

  6. MRC Cancer Unit, University of Cambridge, Cambridge, UK

    Rebecca C. Fitzgerald

  7. Centre for Population Health Sciences, University of Edinburgh, Cambridge, UK

    Julia Lawton

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  1. Nina Hallowell
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  2. Shirlene Badger
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  3. Sue Richardson
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  4. Carlos Caldas
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  5. Richard H. Hardwick
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  6. Rebecca C. Fitzgerald
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  7. Julia Lawton
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Correspondence to Nina Hallowell.

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All authors declare that they have no conflict of interest.

Ethics

Ethical approval for this study was given by Cambridge East Research Ethics Committee 14/03/2012 (Ref: 12/EE/0066). Informed consent was obtained from all individual participants included in the study. The participants have been anonymised and allocated pseudonyms in this report.

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Hallowell, N., Badger, S., Richardson, S. et al. An investigation of the factors effecting high-risk individuals’ decision-making about prophylactic total gastrectomy and surveillance for hereditary diffuse gastric cancer (HDGC). Familial Cancer 15, 665–676 (2016). https://doi.org/10.1007/s10689-016-9910-8

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  • DOI: https://doi.org/10.1007/s10689-016-9910-8

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