Nicci Bartley

Nicci Bartley is a PhD candidate and Research Officer on the PIGeOn Project: Psychosocial Issues in Genomic Oncology, which is being conducted at The University of Sydney. This mixed methods longitudinal study is investigating the psychosocial, behavioural and ethical implications of cancer genomic testing. Nicci is particularly interested in how patients experience uncertainty when undertaking cancer genomic testing, in both prevention and treatment contexts.

Abstract

Cancer patients' views and understanding of genome sequencing: a qualitative study

Nicole Bartley1, Megan Best1, Chris Jacobs2, Ilona Juraskova1, Ainsley J Newson3, Jacqueline Savard4, Bettina Meiser5, Mandy L Ballinger6, Barbara B Biesecker7, Phyllis Butow1.

1 The University of Sydney, Faculty of Science, School of Psychology, Centre of Medical Psychology and Evidence-Based Decision-Making, Psycho-Oncology Co-operative Research Group, Sydney, Australia
2 University of Technology Sydney, Graduate School of Health, Sydney, Australia
3 The University of Sydney, Faculty of Medicine and Health, Sydney School of Public Health, Sydney Health Ethics, Sydney, Australia
4 Deakin University, School of Medicine, Melbourne, Australia
5 University of NSW, Prince of Wales Clinical School, Psychosocial Research Group, Sydney, Australia
6 Garvan Institute of Medical Research, Cancer Division, Sydney, Australia
7  Research Triangle Institute International, Washington DC, USA

Aims:
Little is known about knowledge of, and attitudes towards, germline genome sequencing (GS) among individuals with a personal history of cancer. This qualitative study aimed to investigate knowledge and attitudes of individuals previously diagnosed with a cancer of likely genetic origin, who are undertaking GS.

Methods:
Participants were adults with a cancer of likely genetic etiology who had recently consented to undergo GS as part of a larger genetic study. Semi-structured interviews were conducted with purposively selected participants (n = 20) from the Psychosocial Issues in Genomic Oncology (PiGeOn) study, just after providing a blood sample for GS. Interviews were audio recorded, transcribed and analysed using thematic analysis.

Results:
Analysis identified three main themes: understanding of genomics; motivation; and decision-making. Whilst 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 and therefore create unrealistic expectations of the accuracy and utility of GS. This in turn can prolong the deliberation process and lead to ongoing decisional conflict about undergoing GS.

Conclusions:
Understanding the degree and nature of patient understanding of GS, as well as attitudes and decision-making processes of individuals interested in pursuing GS, will enable health care professionals to manage patient expectations and adequately engage and support patients to make an informed decision when pursuing GS.