PDF(Pubmed)
Abstract：
UNASSIGNED: Genetic testing and counselling are critical in assessing breast cancer risk and tailoring treatment strategies. However, several barriers hinder patients from opting for genetic testing/counselling, leading to fewer than one-third of patients undergoing testing and even fewer being offered counselling. A granular understanding of these barriers is essential in overcoming them.
UNASSIGNED: A multinational survey developed by patient authors was conducted in 9 countries, to identify the specific local/regional barriers. The survey question pathway was individualized, based on responses to prior questions. Percentage responses to a response option were calculated based on the total number of respondents to that question. Chi-square tests were used to assess the significance of the results, if applicable.
UNASSIGNED: The final analysis set (FAS) included 1,176 respondents, with a subset of this responding to all questions. In the FAS, 63% of respondents had undergone testing. Among those who got tested, 70% were offered testing. Among untested respondents, only 40% were offered the test but eventually did not get tested. In the tested population, 44% received counselling, which was significantly higher than 7% (p<0.00001) in the untested group. Among those reporting on awareness, 71% reported awareness level between \'very low\' and \'moderate\' prior to cancer diagnosis. Most respondents (71%) agreed that all breast cancer patients should undergo testing before treatment initiation. However, Asian patients were less likely to endorse this view compared to respondents from other regions (25% vs ≥50%; p<0.00001). A higher proportion of tested respondents were \'very willing\' to get their family members tested (44%) versus untested respondents (11%), with relatively higher willingness among Australian (77%) and Russian respondents (56%), the regional variation being statistically significant (p<0.00001).
UNASSIGNED: Critical gaps remain in the access, awareness and perceived value of genetic testing and counselling, with regional variance or difference between the tested and untested groups. Most patients are not offered counselling, which may be associated with the low uptake of testing. Strategic action is needed to drive policy-shaping and improve access to testing and counselling, including raising patient awareness and improving patient experience for better treatment outcomes.
UNASSIGNED: A multinational survey developed by patient authors was conducted in 9 countries, to identify the specific local/regional barriers. The survey question pathway was individualized, based on responses to prior questions. Percentage responses to a response option were calculated based on the total number of respondents to that question. Chi-square tests were used to assess the significance of the results, if applicable.
UNASSIGNED: The final analysis set (FAS) included 1,176 respondents, with a subset of this responding to all questions. In the FAS, 63% of respondents had undergone testing. Among those who got tested, 70% were offered testing. Among untested respondents, only 40% were offered the test but eventually did not get tested. In the tested population, 44% received counselling, which was significantly higher than 7% (p<0.00001) in the untested group. Among those reporting on awareness, 71% reported awareness level between \'very low\' and \'moderate\' prior to cancer diagnosis. Most respondents (71%) agreed that all breast cancer patients should undergo testing before treatment initiation. However, Asian patients were less likely to endorse this view compared to respondents from other regions (25% vs ≥50%; p<0.00001). A higher proportion of tested respondents were \'very willing\' to get their family members tested (44%) versus untested respondents (11%), with relatively higher willingness among Australian (77%) and Russian respondents (56%), the regional variation being statistically significant (p<0.00001).
UNASSIGNED: Critical gaps remain in the access, awareness and perceived value of genetic testing and counselling, with regional variance or difference between the tested and untested groups. Most patients are not offered counselling, which may be associated with the low uptake of testing. Strategic action is needed to drive policy-shaping and improve access to testing and counselling, including raising patient awareness and improving patient experience for better treatment outcomes.
摘要：
基因检测和咨询对于评估乳腺癌风险和定制治疗策略至关重要。然而,一些障碍阻碍患者选择基因检测/咨询，导致不到三分之一的患者接受检测，甚至更少的患者接受咨询。对这些障碍的详细了解对于克服它们至关重要。
■由患者作者开发的一项跨国调查在9个国家进行，确定特定的地方/区域障碍。调查问题路径是个性化的，基于对先前问题的回答。对答复选项的答复百分比是根据该问题的答复者总数计算的。卡方检验用于评估结果的显著性，如果适用。
■最终分析集（FAS）包括1,176名受访者，其中一个子集可以回答所有问题。在FAS中,63%的受访者接受过测试。在那些接受测试的人中，70%的人接受了测试。在未经测试的受访者中，只有40%的人接受了测试，但最终没有接受测试。在被测试的人群中，44%的人接受了咨询，显著高于未测试组的7%(p<0.00001)。在那些关于意识的报道中，71%的人报告说，在癌症诊断之前，意识水平介于“非常低”和“中等”之间。大多数受访者（71％）同意所有乳腺癌患者在开始治疗前都应接受检查。然而,与其他地区的受访者相比，亚洲患者接受这一观点的可能性较小(25%vs≥50%;p<0.00001)。接受测试的受访者“非常愿意”接受测试的家庭成员（44％）与未经测试的受访者（11％）相比，比例更高，澳大利亚(77%)和俄罗斯(56%)受访者的意愿相对较高，区域差异具有统计学意义(p<0.00001)。
■访问中仍然存在关键差距，基因检测和咨询的意识和感知价值，在测试组和未测试组之间具有区域差异或差异。大多数病人没有得到咨询，这可能与测试的低摄取有关。需要采取战略行动来推动政策制定，并改善获得检测和咨询的机会，包括提高患者意识和改善患者体验，以获得更好的治疗效果。
■由患者作者开发的一项跨国调查在9个国家进行，确定特定的地方/区域障碍。调查问题路径是个性化的，基于对先前问题的回答。对答复选项的答复百分比是根据该问题的答复者总数计算的。卡方检验用于评估结果的显著性，如果适用。
■最终分析集（FAS）包括1,176名受访者，其中一个子集可以回答所有问题。在FAS中,63%的受访者接受过测试。在那些接受测试的人中，70%的人接受了测试。在未经测试的受访者中，只有40%的人接受了测试，但最终没有接受测试。在被测试的人群中，44%的人接受了咨询，显著高于未测试组的7%(p<0.00001)。在那些关于意识的报道中，71%的人报告说，在癌症诊断之前，意识水平介于“非常低”和“中等”之间。大多数受访者（71％）同意所有乳腺癌患者在开始治疗前都应接受检查。然而,与其他地区的受访者相比，亚洲患者接受这一观点的可能性较小(25%vs≥50%;p<0.00001)。接受测试的受访者“非常愿意”接受测试的家庭成员（44％）与未经测试的受访者（11％）相比，比例更高，澳大利亚(77%)和俄罗斯(56%)受访者的意愿相对较高，区域差异具有统计学意义(p<0.00001)。
■访问中仍然存在关键差距，基因检测和咨询的意识和感知价值，在测试组和未测试组之间具有区域差异或差异。大多数病人没有得到咨询，这可能与测试的低摄取有关。需要采取战略行动来推动政策制定，并改善获得检测和咨询的机会，包括提高患者意识和改善患者体验，以获得更好的治疗效果。
