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Catalysts to withdrawal from familial ovarian cancer screening for surgery and reactions to discontinued screening: a qualitative study

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Abstract

Women at high risk of familial ovarian cancer face a potentially difficult risk management choice between unproven ovarian cancer screening (OCS) and bilateral salpingo-oophorectomy (BSO). It is not fully understood why women who initially opt for OCS may later undergo BSO, nor what the impact of this may be. This study explored the catalysts for surgery and reactions to discontinuing OCS. Semi-structured interviews were completed with 21 women who had undergone surgery having initially chosen OCS to explore their screening experiences, reasons for and feelings about surgery, and reactions to discontinuing OCS. The invasive nature and frequency of OCS were not by themselves a catalyst for surgery. A number of catalysts, including abnormal OCS test results, and secondary considerations, such as age-related factors, were found to prompt surgery. The emotional impact of discontinuing OCS following BSO varied between relief, acceptance, and loss of reassurance. OCS appears to be an acceptable risk management strategy under certain circumstances, but varying factors can prompt the decision to opt instead for BSO. The complexity of this management change decision should not be underestimated and needs to be taken into account by clinicians assisting women making choices. These findings highlight the importance of the timing of decision-making about BSO and that risk management options need routine reconsideration, through clinical discussions, information and support.

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Acknowledgments

A major portion of this work was done at UCLH/UCL within the ‘Women’s Health Theme’ of the NIHR UCLH/UCL Comprehensive Biomedical Research Centre supported by the UK Department of Health. We would like to acknowledge the late Joan Austoker who contributed to the study as a member of the PsyFOCS management group. We would like to thank the following for their administrative assistance: Philip Badman, Lesley Hague, Kathryn Harris, Lisa Hinton, Liza James, Tracy Pearmain, Sue Philpott and Andy Ryan. We would also like to thank the participants as well as the PsyFOCS collaborating centres: Cambridge (Addenbrooke’s Hospital), Cardiff (University Hospital of Wales), Glasgow (Yorkhill Hospital), Leeds (St. James’s University Hospital), London UCLH (Elizabeth Garrett Anderson Hospital) and Swansea (Singleton Hospital). The PsyFOCS study is funded by the BUPA Foundation.

Ethical approval

Ethical approval was granted from the Eastern Multi Centre Research Ethics Committee (reference: 97/5/007).

Conflict of interest

None.

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Authors and Affiliations

  1. Institute of Primary Care and Public Health, School of Medicine, Cardiff University, 2nd Floor, Neuadd Meirionnydd, Heath Park, Cardiff, CF14 4YS, UK

    Kate J. Lifford & Kate Brain

  2. Department of Primary Care Health Sciences, University of Oxford, Radcliffe Observatory Quarter, Woodstock Road, Oxford, OX2 6GG, UK

    Alison Clements

  3. Department of Women’s Cancer, UCL EGA Institute for Women’s Health, 1st Floor, Maple House, 149 Tottenham Court Road, London, W1T 7DN, UK

    Lindsay Fraser

  4. School of Psychology, University of Glamorgan, Room FH311, Treforest Campus, Pontypridd, CF37 1DL, UK

    Deborah Lancastle

Authors
  1. Kate J. Lifford
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  2. Alison Clements
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  3. Lindsay Fraser
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  4. Deborah Lancastle
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  5. Kate Brain
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Corresponding author

Correspondence to Kate J. Lifford.

Additional information

Kate J. Lifford and Alison Clements: joint first authors.

On behalf of the PsyFOCS management group: Kate Brain (PI), Mark T. Rogers, Rachel Iredale (School of Medicine, Cardiff University, UK), Alison Clements (Department of Primary Care Health Sciences, University of Oxford, UK), Lindsay Fraser, Usha Menon (Department of Women’s Cancer, UCL EGA Institute for Women’s Health, London, UK), Ian Jacobs (Faculty of Medical and Human Sciences, University of Manchester, UK), Deborah Lancastle (School of Psychology, University of Glamorgan, UK), Ceri Phelps (School of Psychology & Counselling, Swansea Metropolitan University, UK), Adam N. Rosenthal (Barts Cancer Institute, CR-UK Centre of Excellence, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, UK), Eila K. Watson (Faculty of Health and Life Sciences, Oxford Brookes University, UK), Louise Bayne (Ovacome).

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Lifford, K.J., Clements, A., Fraser, L. et al. Catalysts to withdrawal from familial ovarian cancer screening for surgery and reactions to discontinued screening: a qualitative study. Familial Cancer 12, 19–26 (2013). https://doi.org/10.1007/s10689-012-9567-x

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  • DOI: https://doi.org/10.1007/s10689-012-9567-x

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