研究动态
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澳大利亚卵巢癌患者自我报告对基因检测的认识、家族史的影响以及获得临床试验的机会。

Self-reported awareness of genetic testing, the impact of family history, and access to clinical trials for people diagnosed with ovarian cancer in Australia.

发表日期:2024 Aug
作者: Deborah Roczo, Vanessa Alford, Alison Trainer, Anna DeFazio, Amy Pearn, Caitlin Delaney, Megan Cotter, Sue Hegarty
来源: Best Pract Res Cl Ob

摘要:

评估被诊断患有卵巢癌的人对基因检测的了解;了解卵巢癌诊断患者之间可能影响最佳实践护理的知识差距;并监测从 2015 年到 2022 年理解的总体变化。使用在线调查工具在 2015 年、2018 年和 2022 年这三个时间点进行纵向“选择加入”研究。2010 年期间被诊断患有卵巢癌的澳大利亚人(或其家人/护理人员)和2022)。自我报告的对卵巢癌遗传风险因素、基因检测方法和参与临床试验的认识。研究表明,被诊断为卵巢癌的人对家族风险的理解和认识有所提高(增加从 2015 年的 43.6%(149 人中的 45 人)增至 2022 年的 62.9%(264 人中的 166 人);但人们不太可能意识到体细胞(肿瘤)和种系检测之间的差异(266 人中的 120 人,45.1%)。然而,非大都市地区自我报告的临床试验准入情况有所改善(64 个地区中有 12 个,2022 年为 18.8%,而 145 个地区中有 22 个,2018 年为 15.2%),与大都市地区持平(169 个地区中的 32 个,2022 年为 15.2%)。 2022 年为 18.9%)。尽管卵巢癌患者对基因检测的认识有所提高,但在了解基因检测类型(种系和体细胞)和基因变异靶向治疗方面仍然存在知识差距;需要进一步努力提高临床试验意识和可及性。© 2024 作者。
To assess the understanding of people diagnosed with ovarian cancer regarding genetic testing; to understand knowledge gaps among people diagnosed with ovarian cancer that may impact best practice care; and to monitor overall changes in understanding from 2015 to 2022.Longitudinal 'opt-in' study using an online survey tool at three timepoints: 2015, 2018 and 2022.People in Australia (or their families / caregivers) diagnosed with ovarian cancer between 2010 and 2022).Self-reported awareness of heritable risk factors for ovarian cancer, genetic testing approaches and participation in clinical trials.The study indicated that there have been improvements in the understanding and awareness of people diagnosed with ovarian cancer regarding familial risk (an increase from 43.6% (45 of 149) in 2015 to 62.9% (166 of 264) in 2022); but people were less likely to be aware of the difference between somatic (tumour) and germline testing (120 of 266, 45.1%). However, there were self-reported improvements to clinical trial access in non-metropolitan areas (12 of 64, 18.8% in 2022 compared to 22 of 145, 15.2% in 2018), bringing it on par with metropolitan areas (32 of 169, 18.9% in 2022).Despite improved awareness about genetic testing among people diagnosed with ovarian cancer, there remain knowledge gaps in understanding of genetic testing types (germline and somatic) and gene variant targeted therapies; and further work to improve clinical trial awareness and access is required.© 2024 The Author(s).