Public support for healthcare-mediated disclosure of hereditary cancer risk information: Results from a population-based survey in Sweden
Public support for healthcare-mediated disclosure of hereditary cancer risk information: Results from a population-based survey in Sweden
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DOI：
10.1186/s13053-020-00151-0
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发表时间：
2020-09-15
影响因子：
1.7
通讯作者：
Rosen, Anna
中科院分区：
文献类型：
--
作者：
Andersson, Andreas;Hawranek, Carolina;Rosen, Anna
背景：对遗传性癌症风险增加的家庭中的高危个体进行有针对性的监测是一种有效的预防策略，如果亲属被识别、告知并参加筛查计划。尽管有潜在的好处，许多符合条件的高危亲属仍然不知道他们的癌症风险。本研究描述了一般公众对遗传性结直肠癌（CRC）风险信息披露的意见，以及对信息来源和信息方式的偏好。方法通过瑞典公民网络面板随机抽样的一般公众进行评估。受访者被告知，他们是一个家庭中有风险的亲戚，估计CRC的遗传风险增加;终身风险为10%（中度）或70%（高）。结肠镜检查作为预防措施。使用Pearson卡方（卡方（2））检验分析结果，以确定组间的显著差异。结果在1800名受邀参与者中，977人完成了调查（54%）。在中度和高度风险的情况下，分别有89.2%和90.6%的人希望获得有关CRC潜在遗传风险的信息（卡方2，p = 0.755）。女性（91.5%）的知情意愿高于男性（87.0%，卡方2，p = 0.044）。不同年龄组、文化程度、居住地、有无子女之间的差异无统计学意义。风险信息的首选来源是医疗保健专业人员在中度和高风险情况下（80.1%和75.5%）。然而，分别有18.1%和20.1%的人希望由家庭成员告知。假设医疗保健专业人员披露信息，最喜欢的信息方式是信件和电话（38.4%和33.2%）。结论在这项研究中，大多数受访者希望了解潜在的遗传性风险的CRC和首选的医疗保健专业人员传达这一信息。两个级别的CRC终身风险并没有显着影响被告知的兴趣。我们的数据提供了对瑞典人口需求和偏好的深入了解，为开发补充性医疗保健辅助沟通途径提供了理论基础，以充分发挥遗传性CRC的靶向预防潜力。
Background Targeted surveillance of at-risk individuals in families with increased risk of hereditary cancer is an effective prevention strategy if relatives are identified, informed and enrolled in screening programs. Despite the potential benefits, many eligible at-risk relatives remain uninformed of their cancer risk. This study describes the general public's opinion on disclosure of hereditary colorectal cancer (CRC) risk information, as well as preferences on the source and the mode of information. Methods A random sample of the general public was assessed through a Swedish citizen web-panel. Respondents were presented with scenarios of being an at-risk relative in a family that had an estimated increased hereditary risk of CRC; either 10% (moderate) or 70% (high) lifetime risk. A colonoscopy was presented as a preventive measure. Results were analysed to identify significant differences between groups using the Pearson's chi-square (chi(2)) test. Results Of 1800 invited participants, 977 completed the survey (54%). In the moderate and high-risk scenarios, 89.2 and 90.6% respectively, would like to receive information about a potential hereditary risk of CRC (chi 2,p = .755). The desire to be informed was higher among women (91.5%) than men (87.0%, chi 2,p = .044). No significant differences were found when comparing different age groups, educational levels, place of residence and having children or not. The preferred source of risk information was a healthcare professional in both moderate and high-risk scenarios (80.1 and 75.5%). However, 18.1 and 20.1% respectively would prefer to be informed by a family member. Assuming that healthcare professionals disclosed the information, the favoured mode of information was letter and phone (38.4 and 33.2%). Conclusions In this study a majority of respondents wanted to be informed about a potential hereditary risk of CRC and preferred healthcare professionals to communicate this information. The two presented levels of CRC lifetime risk did not significantly affect the interest in being informed. Our data offer insights into the needs and preferences of the Swedish population, providing a rationale for developing complementary healthcare-assisted communication pathways to realise the full potential of targeted prevention of hereditary CRC.