BRCA awareness and testing experience in the UK Jewish population: a qualitative study.

Autor:	Sarig K; Queen Mary University of London, London, UK., Oxley S; Queen Mary University of London, London, UK.; Department of Gynaecological Oncology, Barts Health NHS Trust, London, UK., Kalra A; Queen Mary University of London, London, UK.; Department of Gynaecological Oncology, Barts Health NHS Trust, London, UK., Sobocan M; Queen Mary University of London, London, UK.; University of Maribor, Maribor, Slovenia., Fierheller CT; Queen Mary University of London, London, UK., Sideris M; Queen Mary University of London, London, UK.; Department of Gynaecological Oncology, Barts Health NHS Trust, London, UK., Gootzen T; Queen Mary University of London, London, UK., Ferris M; Lane End Medical Practice, London, UK., Eeles RA; Oncogenetics, Institute of Cancer Research, Sutton, UK.; Royal Marsden NHS Foundation Trust, London, UK., Evans DG; Manchester Centre for Genomic Medicine, Manchester, UK., Quaife SL; Queen Mary University of London, London, UK., Manchanda R; Queen Mary University of London, London, UK r.manchanda@qmul.ac.uk.; Department of Gynaecological Oncology, Barts Health NHS Trust, London, UK.
Jazyk:	angličtina
Zdroj:	Journal of medical genetics [J Med Genet] 2024 Jun 20; Vol. 61 (7), pp. 716-725. Date of Electronic Publication: 2024 Jun 20.
DOI:	10.1136/jmg-2023-109576
Abstrakt:	Background: 1 in 40 UK Jewish individuals carry a pathogenic variant in BRCA1/BRCA2 . Traditional testing criteria miss half of carriers, and so population genetic testing is being piloted for Jewish people in England. There has been no qualitative research into the factors influencing BRCA awareness and testing experience in this group. This study aimed to explore these and inform improvements for the implementation of population genetic testing. Methods: Qualitative study of UK Jewish adults who have undergone BRCA testing. We conducted one-to-one semistructured interviews via telephone or video call using a predefined topic guide, until sufficient information power was reached. Interviews were audio-recorded, transcribed verbatim and interpreted using applied thematic analysis. Results: 32 individuals were interviewed (28 carriers, 4 non-carriers). We interpreted five themes intersecting across six time points of the testing pathway: (1) individual differences regarding personal/family history of cancer, demographics and personal attitudes/approach; (2) healthcare professionals' support; (3) pathway access and integration; (4) nature of family/partner relationships; and (5) Jewish community factors. Testing was largely triggered by connecting information to a personal/family history of cancer. No participants reported decision regret, although there was huge variation in satisfaction. Suggestions were given around increasing UK Jewish community awareness, making information and support services personally relevant and proactive case management of carriers. Conclusions: There is a need to improve UK Jewish community BRCA awareness and to highlight personal relevance of testing for individuals without a personal/family history of cancer. Traditional testing criteria caused multiple issues regarding test access and experience. Carriers want information and support services tailored to their individual circumstances. Competing Interests: Competing interests: SO and RM declare funding from the Rosetrees Trust outside this work. RM declares research funding from the British Gynaecological Cancer Society, Barts & the London Charity, Eve Appeal, GSK and Yorkshire Cancer Research outside this work; an honorarium for grant review from Israel National Institute for Health Policy Research and honorarium for advisory board membership from AstraZeneca/MSD/EGL/GSK. RM was supported by an NHS Innovation Accelerator (NIA) Fellowship for population testing. RM has received grant funding for the evaluation of the NHS Jewish BRCA Programme and the Small Business Research Initiative BRCA-DIRECT breast cancer testing programme. RM has been the chair for the Trial Steering Committee for the BRCA-DIRECT trial. RM has received grant funding and is chief investigator for the PROTECT-C trial into population testing in the UK general population. RAE declares honoraria from GU-ASCO, Janssen, University of Chicago and Dana Farber Cancer Institute USA as a speaker; and educational honorarium from Bayer and Ipsen. RAE is a member of an external expert committee to AstraZeneca UK, a member of Active Surveillance Movember Committee, a member of the SAB of Our Future Health, and undertakes private practice in cancer genetic testing as a sole trader at the Royal Marsden NHS Foundation Trust and 90 Sloane Street SW1X 9PQ and 280 Kings Road SW3 4NX, London, UK. The other authors declare no conflict of interest. (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)
Databáze:	MEDLINE
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