Unselected Population Genetic Testing for Personalised Ovarian Cancer Risk Prediction: A Qualitative Study Using Semi-Structured Interviews.
Authors
Gaba, Faiza
Oxley, Samuel
Yang, Xin
Chandrasekaran, Dhivya
Kalsi, Jatinderpal
Side, Lucy
Waller, Jo
Ahmed, Munaza
Wallace, Andrew
Wallis, Yvonne
Jacobs, Ian
Legood, Rosa
Publication Date
2022-04-19Journal Title
Diagnostics (Basel)
ISSN
2075-4418
Publisher
MDPI AG
Volume
12
Issue
5
Language
en
Type
Article
This Version
VoR
Metadata
Show full item recordCitation
Gaba, F., Oxley, S., Liu, X., Yang, X., Chandrasekaran, D., Kalsi, J., Antoniou, A., et al. (2022). Unselected Population Genetic Testing for Personalised Ovarian Cancer Risk Prediction: A Qualitative Study Using Semi-Structured Interviews.. Diagnostics (Basel), 12 (5) https://doi.org/10.3390/diagnostics12051028
Abstract
Unselected population-based personalised ovarian cancer (OC) risk assessments combining genetic, epidemiological and hormonal data have not previously been undertaken. We aimed to understand the attitudes, experiences and impact on the emotional well-being of women from the general population who underwent unselected population genetic testing (PGT) for personalised OC risk prediction and who received low-risk (<5% lifetime risk) results. This qualitative study was set within recruitment to a pilot PGT study using an OC risk tool and telephone helpline. OC-unaffected women ≥ 18 years and with no prior OC gene testing were ascertained through primary care in London. In-depth, semi-structured and 1:1 interviews were conducted until informational saturation was reached following nine interviews. Six interconnected themes emerged: health beliefs; decision making; factors influencing acceptability; effect on well-being; results communication; satisfaction. Satisfaction with testing was high and none expressed regret. All felt the telephone helpline was helpful and should remain optional. Delivery of low-risk results reduced anxiety. However, care must be taken to emphasise that low risk does not equal no risk. The main facilitators were ease of testing, learning about children's risk and a desire to prevent disease. Barriers included change in family dynamics, insurance, stigmatisation and personality traits associated with stress/worry. PGT for personalised OC risk prediction in women in the general population had high acceptability/satisfaction and reduced anxiety in low-risk individuals. Facilitators/barriers observed were similar to those reported with genetic testing from high-risk cancer clinics and unselected PGT in the Jewish population.
Keywords
ovarian cancer, population testing, risk stratification, health and well-being
Sponsorship
Cancer Research UK (C16420/A18066)
The Eve Appeal (ECMG1C4R)
Identifiers
External DOI: https://doi.org/10.3390/diagnostics12051028
This record's URL: https://www.repository.cam.ac.uk/handle/1810/336359
Rights
Licence:
https://creativecommons.org/licenses/by/4.0/
Statistics
Total file downloads (since January 2020). For more information on metrics see the
IRUS guide.