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Anticipated health behaviour changes and perceived control in response to disclosure of genetic risk of breast and ovarian cancer: a quantitative survey study among women in the UK
  1. Susanne F Meisel1,2,
  2. Lindsay Sarah Macduff Fraser3,
  3. Lucy Side4,
  4. Sue Gessler3,5,
  5. Katie E J Hann3,
  6. Jane Wardle2,
  7. Anne Lanceley3,5
  8. PROMISE study team
  1. 1 Dept of Psychology, Institute of Psychology, Psychiatry and Neuroscience, King’s College London, London, UK
  2. 2 Department of Behavioural Science and Health, Institute of Epidemiology and Health Care, University College London, London, UK
  3. 3 Dept of Women’s Cancer, UCL EGA Institute for Women’s Health, University College London, London, UK
  4. 4 Clinical Genetics, University Hospital Southampton NHS Trust, Southampton, UK
  5. 5 Gynaecological Cancer Centre, University College London Hospitals (UCLH), London, UK
  1. Correspondence to Dr Anne Lanceley; a.lanceley{at}ucl.ac.uk

Abstract

Background Genetic risk assessment for breast cancer and ovarian cancer (BCOC) is expected to make major inroads into mainstream clinical practice. It is important to evaluate the potential impact on women ahead of its implementation in order to maximise health benefits, as predictive genetic testing without adequate support could lead to adverse psychological and behavioural responses to risk disclosure.

Objective To examine anticipated health behaviour changes and perceived control to disclosure of genetic risk for BCOC and establish demographic and person-specific correlates of adverse anticipated responses in a population-based sample of women.

Design Cross-sectional quantitative survey study carried out by the UK Office for National Statistics in January and March 2014.

Setting Face-to-face computer-assisted interviews conducted by trained researchers in participants’ homes.

Participants 837 women randomly chosen from households across the UK identified from the Royal Mail’s Postcode Address File.

Outcome measures Anticipated health behaviour change and perceived control to disclosure of BCOC risk.

Results In response to a genetic test result, most women (72%) indicated ‘I would try harder to have a healthy lifestyle’, and over half (55%) felt ‘it would give me more control over my life’. These associations were independent of demographic factors or perceived risk of BCOC in Bonferroni-corrected multivariate analyses. However, a minority of women (14%) felt ‘it isn’t worth making lifestyle changes’ and that ‘I would feel less free to make choices in my life’ (16%) in response to BCOC risk disclosure. The former belief was more likely to be held by women who were educated below university degree level (P<0.001) after adjusting for other demographic and person-specific correlates.

Conclusion These findings indicate that women in the UK largely anticipate that they would engage in positive health behaviour changes in response to BCOC risk disclosure.

  • breast cancer
  • ovarian cancer
  • predictive genetic testing
  • risk

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

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Footnotes

  • JW was deceased on 20 Oct 2015.

  • Contributors SFM participated in the study design, analysed the data and drafted the manuscript. KEJH helped with data interpretation and critically revised the manuscript. LS, LSMF, SG, AL and JW conceived the study, participated in the study design and coordination and critically revised the manuscript. All authors except JW who sadly died before final submission have seen and approved the final manuscript.

  • Funding This research was funded by grants from the Eve Appeal (London, UK; grant no 509050) and Cancer Research UK (London, UK; grant no 508007). JW was supported by the Cancer Research UK as part of the CR UK-UCL Cancer Centre.

  • Competing interests SFM and KEJH had financial support from the Cancer Research UK and the Eve Appeal for the submitted work.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Data are available on request from the corresponding author: a.lanceley@ucl.ac.uk.