研究动态
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在线提供 BRCA1 和 BRCA2 健康信息:搜索引擎驱动的基于网络的系统分析。

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

发表日期:2024 Jun 25
作者: 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
来源: TROPICAL MEDICINE & INTERNATIONAL HEALTH

摘要:

英国犹太人可以进行 BRCA 基因检测,但 BRCA 在线信息的提供情况尚不清楚。我们的目的是评估英国组织 (UKO)、英国犹太社区组织 (JCO) 和基因检测提供商 (GTP) 在线提供的 BRCA 信息。使用相关关键字组对提供 BRCA 信息的组织进行 Google 搜索。前100个网站链接分为UKO/JCO/GTP;其他 JCO 通过社区专家得到补充。使用定制的 BRCA 信息调查问卷对网站进行了审查。信息提供的评估分为五个领域:可访问性、范围、深度、准确性和质量。这些领域被组合起来以提供综合分数(最高分数 = 5)。结果经过筛选 (n = 6856),45 个 UKO、16 个 JCO 和 18 个 GTP 提供了 BRCA 信息。可访问性很高(84%,66/79)。 35% (28/79) 的项目涉及超过 50% 的项目,但范围不够。大多数(82%,65/79)描述了 BRCA 相关癌症:78%(62/79)提到了乳腺癌和/或卵巢癌,但只有 34%(27/79)提到了≥1种胰腺癌、前列腺癌、黑色素瘤。很少有网站提供普通人群 (24%,19/79) 和犹太人群体 (20%,16/79) 的载波频率。只有 15% (12/79) 的信息质量良好,但存在一些/极少的缺陷。总体信息提供为低至中等:中位分数 UKO = 2.1 (IQR = 1)、JCO = 1.6 (IQR = 0.9) 和 GTP = 2.3 (IQR = 1)(最高分数 = 5)。网上缺乏高质量的 BRCA 信息。这些发现对英国犹太人 BRCA 项目和考虑 BRCA 检测的项目具有影响。
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.