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Original research
Cancer patients’ views and understanding of genome sequencing: a qualitative study
  1. Nicci Bartley1,
  2. Megan Best1,
  3. Chris Jacobs2,
  4. Ilona Juraskova1,
  5. Ainsley J Newson3,
  6. Jacqueline Savard4,
  7. Bettina Meiser5,
  8. Mandy L Ballinger6,
  9. David M Thomas6,
  10. Barbara Biesecker7,
  11. Phyllis Butow1
  1. 1 School of Psychology, Faculty of Science, The University of Sydney, Camperdown, New South Wales, Australia
  2. 2 Graduate School of Health, University of Technology Sydney, Sydney, New South Wales, Australia
  3. 3 School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, Australia
  4. 4 School of Medicine, Faculty of Health, Deakin University, Burwood, Victoria, Australia
  5. 5 Prince of Wales Clinical School, University of New South Wales Sydney, Sydney, New South Wales, Australia
  6. 6 The Kinghorn Cancer Center and Garvan Institute of Medical Research, Darlinghurst, New South Wales, Australia
  7. 7 Research Triangle Institute, Research Triangle Park, North Carolina, USA
  1. Correspondence to Nicci Bartley, School of Psychology, Faculty of Science, The University of Sydney, Camperdown, NSW 2006, Australia; nicole.bartley{at}sydney.edu.au

Abstract

Background Little is known about knowledge of, and attitudes towards, genome sequencing (GS) among individuals with a personal history of cancer who decide to undergo GS. This qualitative study aimed to investigate baseline knowledge and attitudes among individuals previously diagnosed with a cancer of likely genetic origin who have consented to GS.

Methods Semistructured interviews were conducted with purposively selected participants (n=20) from the longitudinal Psychosocial Issues in Genomic Oncology study, within a month of consenting to GS and prior to receiving any results. Participants were adults with a cancer of likely genetic aetiology who are undertaking GS as part of a larger genetic study.

Results Analysis identified three main themes: limited understanding of genomics; multifactorial motivation; and complex decision making. While motivations such as obtaining health information about self and family appear to be the main drivers for undertaking GS, these motivations are sometimes based on limited knowledge of the accuracy and utility of GS, creating unrealistic expectations. This in turn can prolong the deliberation process and lead to ongoing decisional conflict.

Conclusion Understanding the degree and nature of patient understanding of GS, as well as their attitudes and decision-making processes, will enable healthcare professionals to better manage patient expectations and appropriately engage and support patients to make an informed decision when pursuing GS.

  • cancer
  • genome sequencing
  • patient attitudes
  • psychosocial
  • qualitative
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Footnotes

  • Contributors Study concept and design: PB, MB, CJ, IJ, AJN, JS, BM, MLB, DMT and BB; acquisition, analysis and interpretation of data: NB, PB, MB, CJ, IJ, AJN, JS, BM and BB; drafting the manuscript: NB; critical revision of the manuscript: PB, MB, CJ, IJ, AJN, JS, BM, MLB, DMT and BB; accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved: all authors; final approval of the submitted manuscript: all authors; obtained funding: PB; study supervision: PB and MB.

  • Funding The PiGeOn Project is funded by a National Health and Medical Research Council (NHMRC) of Australia Project Grant (ID1124749). Investigators received the following support: PB: NHMRC Senior Principal Research Fellowship (APP1121630); MB: Post-Doctoral Research Fellowship from the Cancer Institute of NSW (MB00352); BM: NHMRC Senior Research Fellowship Level B (ID1078523); MLB: Cancer Institute NSW Career Development Fellowship (CDF171109); DMT: NHMRC Principal Research Fellowship (APP1104364).

  • Disclaimer No funding body had any input in the design of the study, or collection, analysis and interpretation of data or in writing the manuscript.

  • Competing interests BM has a remunerated consultant role with the company Astrazeneca with respect to an unrelated project. The other authors declare no conflicts of interest.

  • Patient consent for publication Not required.

  • Ethics approval The St Vincent’s Hospital Human Research Ethics Committee reviewed and approved this study (HREC/16/SVH/24).

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

  • Data availability statement Data are available on reasonable request. Deidentified data are available from the corresponding author NB, The Psycho-Oncology Cooperative Research Group, School of Psychology, Faculty of Science, The University of Sydney.

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