Andersson Andreas, Hawranek Carolina, Öfverholm Anna, Ehrencrona Hans, Grill Kalle, Hajdarevic Senada, Melin Beatrice, Tham Emma, Hellquist Barbro Numan, Rosén Anna
Department of Radiation Sciences, Umeå University, Umeå, Sweden.
Department of Clinical Sciences, University of Gothenburg, Gothenburg, Sweden.
Hered Cancer Clin Pract. 2020 Sep 15;18:18. doi: 10.1186/s13053-020-00151-0. eCollection 2020.
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.
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 (χ) test.
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 (χ2, = .755). The desire to be informed was higher among women (91.5%) than men (87.0%, χ2, = .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%).
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.
如果能够识别、告知有遗传癌症风险增加的家庭中的高危个体并让其加入筛查项目，那么对这些个体进行针对性监测是一种有效的预防策略。尽管有潜在益处，但许多符合条件的高危亲属仍未被告知其癌症风险。本研究描述了公众对遗传性结直肠癌（CRC）风险信息披露的看法，以及对信息来源和信息传播方式的偏好。
通过瑞典公民网络小组对公众进行随机抽样评估。向受访者呈现这样的情景：他们是一个家庭中的高危亲属，该家庭估计遗传性结直肠癌风险增加；终身风险为10%（中度）或70%（高度）。将结肠镜检查作为一种预防措施。使用Pearson卡方（χ²）检验分析结果，以确定组间的显著差异。
在1800名受邀参与者中，977人完成了调查（54%）。在中度和高度风险情景中，分别有89.2%和90.6%的人希望获得关于遗传性结直肠癌潜在风险的信息（χ² = 0.755）。女性（91.5%）比男性（87.0%，χ² = 0.044）更希望被告知。在比较不同年龄组、教育水平、居住地点以及是否有子女时，未发现显著差异。在中度和高度风险情景中，风险信息的首选来源都是医疗保健专业人员（分别为80.1%和75.5%）。然而，分别有18.1%和20.1%的人更希望由家庭成员告知。假设由医疗保健专业人员披露信息，最受欢迎的信息传播方式是信件和电话（分别为38.4%和33.2%）。
在本研究中，大多数受访者希望被告知遗传性结直肠癌的潜在风险，并更倾向于由医疗保健专业人员传达此信息。所呈现的两个结直肠癌终身风险水平对被告知的意愿没有显著影响。我们的数据为了解瑞典人群的需求和偏好提供了见解，为开发辅助医疗保健的沟通途径以充分发挥遗传性结直肠癌针对性预防的潜力提供了依据。
