Online Provision of BRCA1 and BRCA2 Health Information: A Search Engine Driven Systematic Web-Based Analysis

Tamar A. Gootzen; Ashwin Kalra; Katrina Sarig; Monika Sobočan; Samuel George Oxley; Nina Dworschak; Ariadni Georgiannakis; Sevasti Glynou; Angeliki Taniskidi; Subhasheenee Ganesan; Michelle Ferris; Rosa Legood; Ros Eeles; D. Gareth R Evans; Caitlin T. Fierheller; Ranjit Manchanda

doi:10.3390/cancers16132324

Cancers (Jun 2024)

Online Provision of BRCA1 and BRCA2 Health Information: A Search Engine Driven Systematic Web-Based Analysis

Tamar A. Gootzen,
Ashwin Kalra,
Katrina Sarig,
Monika Sobočan,
Samuel George Oxley,
Nina Dworschak,
Ariadni Georgiannakis,
Sevasti Glynou,
Angeliki Taniskidi,
Subhasheenee Ganesan,
Michelle Ferris,
Rosa Legood,
Ros Eeles,
D. Gareth R Evans,
Caitlin T. Fierheller,
Ranjit Manchanda

Affiliations

Tamar A. Gootzen: Centre for Cancer Screening, Prevention & Early Diagnosis, Wolfson Institute of Population Health, Charterhouse Square, Queen Mary University of London, London EC1M 6BQ, UK
Ashwin Kalra: Centre for Cancer Screening, Prevention & Early Diagnosis, Wolfson Institute of Population Health, Charterhouse Square, Queen Mary University of London, London EC1M 6BQ, UK
Katrina Sarig: Centre for Cancer Screening, Prevention & Early Diagnosis, Wolfson Institute of Population Health, Charterhouse Square, Queen Mary University of London, London EC1M 6BQ, UK
Monika Sobočan: Centre for Cancer Screening, Prevention & Early Diagnosis, Wolfson Institute of Population Health, Charterhouse Square, Queen Mary University of London, London EC1M 6BQ, UK
Samuel George Oxley: Centre for Cancer Screening, Prevention & Early Diagnosis, Wolfson Institute of Population Health, Charterhouse Square, Queen Mary University of London, London EC1M 6BQ, UK
Nina Dworschak: Barts and the London School of Medicine, Queen Mary University of London, London E1 2AD, UK
Ariadni Georgiannakis: Barts and the London School of Medicine, Queen Mary University of London, London E1 2AD, UK
Sevasti Glynou: Barts and the London School of Medicine, Queen Mary University of London, London E1 2AD, UK
Angeliki Taniskidi: Barts and the London School of Medicine, Queen Mary University of London, London E1 2AD, UK
Subhasheenee Ganesan: Centre for Cancer Screening, Prevention & Early Diagnosis, Wolfson Institute of Population Health, Charterhouse Square, Queen Mary University of London, London EC1M 6BQ, UK
Michelle Ferris: Lane End Medical Practice, London HA8 9GJ, UK
Rosa Legood: Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London WC1H 9SH, UK
Ros Eeles: The Institute of Cancer Research, and Royal Marsden NHS Foundation Trust, London SM2 5PT, UK
D. Gareth R Evans: Manchester Centre for Genomic Medicine, Division of Evolution, Infection and Genomic Sciences, University of Manchester, MAHSC, 6th Floor Saint Mary’s Hospital, Manchester M13 9WL, UK
Caitlin T. Fierheller: Centre for Cancer Screening, Prevention & Early Diagnosis, Wolfson Institute of Population Health, Charterhouse Square, Queen Mary University of London, London EC1M 6BQ, UK
Ranjit Manchanda: Centre for Cancer Screening, Prevention & Early Diagnosis, Wolfson Institute of Population Health, Charterhouse Square, Queen Mary University of London, London EC1M 6BQ, UK

DOI: https://doi.org/10.3390/cancers16132324
Journal volume & issue: Vol. 16, no. 13
p. 2324

Abstract

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BRCA genetic testing is available for UK Jewish individuals but the provision of information online for BRCA is unknown. We aimed to evaluate online provision of BRCA information by UK organisations (UKO), UK Jewish community organisations (JCO), and genetic testing providers (GTP). Google searches for organisations offering BRCA information were performed using relevant sets of keywords. The first 100 website links were categorised into UKOs/JCOs/GTPs; additional JCOs were supplemented through community experts. Websites were reviewed using customised questionnaires for BRCA information. Information provision was assessed for five domains: accessibility, scope, depth, accuracy, and quality. These domains were combined to provide a composite score (maximum score = 5). Results were screened (n = 6856) and 45 UKOs, 16 JCOs, and 18 GTPs provided BRCA information. Accessibility was high (84%,66/79). Scope was lacking with 35% (28/79) addressing >50% items. Most (82%, 65/79) described BRCA-associated cancers: breast and/or ovarian cancer was mentioned by 78%(62/79), but only 34% (27/79) mentioned ≥1 pancreatic, prostate, melanoma. Few websites provided carrier frequencies in the general (24%,19/79) and Jewish populations (20%,16/79). Only 15% (12/79) had quality information with some/minimal shortcomings. Overall information provision was low-to-moderate: median scores UKO = 2.1 (IQR = 1), JCO = 1.6 (IQR = 0.9), and GTP = 2.3 (IQR = 1) (maximum-score = 5). There is a scarcity of high-quality BRCA information online. These findings have implications for UK Jewish BRCA programmes and those considering BRCA testing.

Published in Cancers

ISSN: 2072-6694 (Online)
Publisher: MDPI AG
Country of publisher: Switzerland
LCC subjects: Medicine: Internal medicine: Neoplasms. Tumors. Oncology. Including cancer and carcinogens
Website: https://www.mdpi.com/journal/cancers/

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